No one could possibly understand this disease unless you have ms like myself. It’s indescribable. Everyday is different and really tough. God bless us all. I understand what this gentleman is talking about and understand how he feels
I've had MS since I was 20 and now I'm 63. Life has it's ups and downs. I have more good days than bad days. I don't use any medication. I'm an upbeat, positive person and I think that's helps a lot with everything in life. I hope everyone with MS has a good support of family and friends. I have a great wife and that makes the biggest difference in my life. Best wishes to everyone.
I went to 3 doctors and they all blew off my symptoms as anxiety. At this point I'm completely disillusioned with the medical system. If I drop dead, I drop dead. If I go blind, I go blind. I've just accepted the fact that I'm alone. I wish I didn't live next to this multi-million dollar hospital while suffering. If I was in the wilderness, I could accept the fact that this is just nature taking its course...but knowing that I just don't have the resources to incentivise the people right next to me to take me seriously is depressing. The truth is: most doctors just don't care. Most of them got into the profession because they were interested in medical science and the money. I would be less resentful if the law didn't create this medical class through regulation. They should deregulate the medical system and allow some true healers that want to help people practice medicine....instead of all these med school scientists who don't care about people.
George I hope you’re feeling better now and have found a really good Neurologist. It’s hard coming to that point of acceptance regarding your diagnosis. I got diagnosed 6 weeks ago and am currently looking at different treatment options, but I’m happy I have a really kind Neurologist who has my best interests at heart.
Hey George! I've been deep in that frame of mind so I know exactly what you were feeling when you wrote this Are things still bad for you? Do you need anything at all?
Try and find an neurologist specializing in Ms or see how many ms patients he/she treats. Your insurance has a provider directory and list specialties you want to find a neurologist who specializes in Ms or call to find out. Call the Ms society for resources and the Ms foundation, don’t give up
You can literally hear the slight tremble in his voice as he is telling his story. I can relate to that so much, I still find it extremely difficult to talk about.
Hi Spencer's MS Story, How's thing's? I myself know what its like living with a illness that the doctors couldn't really help me with, Then Jesus gave me a miracle and healed me, Please turn to Jesus He loves you, The bible tells us in Romans 10:13 For whosoever shall call upon the name of the Lord shall be saved, Its as easy as asking Jesus into your heart to be your personal Lord and Saviour, Jesus will answer you, I know this because He answered me when I called out to Him, God bless
@@jesussaves1827 hello brother how r you now , I've also got this, is there any cure of it, or we r class to cure ms? I just realised that human discoverd matching that can look 13billon yr in past, but there is no cure of some disease, a varse percentage of people are suffering from those disease, and it's worsen then he'll, why don't we just try to do something..
I was hospitalized in 2014 for having anaemia, but I w as experiencing other symptoms while I was there. A neurologist did some testing like an MRI and explained to me that the endings of cords looked like a rat had chewed on them and I lashes on my spine cord that displayed everytime I had a flare-up. He asked for a spinal tap to confirm his diagnosis. It came back that he was correct. This hasn't been an easy journey for me (or none of us). This chronic disease is taking a lot of people's dignity and self respect! But I refuse to give up!
Thank you for sharing. I went through much the same thing. It happened to me for about 5 years. Until a Neurologist sent me to have MRI. When I went to see him. He told me there is light at the end of the tunnel. It went through my Wow! This great. Then he told me that I had MS. You could have knocked me over with a feather. That was almost 29 years ago. I am now coming up to 79. It has not been easy. There is a good life still there when have MS. I wish everyone all the best and happiness.
I’ve never been so moved by a story before. Just looking at all the emotion in his face and the tears he’s trying to hold back. He looks terrified. I hope he’s doing ok now
I am on day 6 of testing and today was the first time I heard MS. To be honest, I feel the same way. Since 2015 I have waves of feeling awful and now everything makes sense. If it's MS, okay. Great. I have a diagnosis... FINALLY! Now... lets get the best treatment possible!
Hi Artistries, If you get the diagnose you start searching for the best treatment.... and after some years you find out the is no such best treatment. You can make a bet like roulet. There are 10 DMTs and 40 diets. Maybe one works for you, maybe none of them. Maybe you do not need to do anything to stay well.
I’ve been thinking about you a lot lately and praying for you sending comforting hugs n prayers n thanking you for sharing your journey it has to be very hard. I was on a vent for 3 weeks after I broke my neck it wasn’t fun so I somewhat understand how uncomfortable that is when you have to be suctioned while on a vent. You are amazing sweetheart 💕💕💕💕🙏💕🙏🙏🙏
What a roller coaster. Your story will help so many. You are very courageous. So glad you were persistent & wow, what a story teller! Good on you buddy!
My GP was great in ordering the MRI fairly quickly after I started experiencing symptoms (went in for debilitating vertigo in March, went back for a dead left leg in June, got referred to a neurologist in July). Your reflections on how they broke the news made me giggle. My GP handed me a box of Kleenex when she told me her suspicions ... the specialist was much more pragmatic and open, and made me feel much better about it! I agree; MS is a little scary, but getting a diagnosis was such a relief! Now I know what I’m up against!
Emily similar situation, like urself i am very lucky to have a fantastic GP for the past 14yrs she made the call for MRI last year and i just had my diagnosis last month. Wishing you all the best in the future
Drs unfortunately learn from textbooks. They do not listen enough to their patients. They may hear what they say but do not fully understand what is being said.
Or the fact his father had ms and he didn’t push for that himself every time also didn’t help. That should have been a red flag from the beginning for him.
Same here. Just got diagnosed Ms 2 mo. Ago 45yr.old. since 28 yr. Old lost vision, vertigo, vision problems, migraines since high school. Alway symptoms disappeared magically, never diagnosed. I was actually happy to have a diagnosis, now I can move forward w/ life. Thought I was crazy.
What a terrible health system you have to have gone through the years virtually dismissed and always without diagnosis and then the delivery of the diagnosis was just awful. Thank goodness you sought out the MS Specialist advice..... my mother diagnosed MS age 44 and lived to 86 yrs with relapsing remitting MS ... you can live a full life with MS.
That was so informative. Thank you for sharing your story I hope that you are well and managing your symptoms I have been experiencing escalating symptoms since last summer/fall I finally had a brain MRI and am awaiting the results It took 6 months to get a MRI Now I need to be referred to a neurologist Two weeks ago I woke up with complete numbness down the left side of my body I went to emergency and they did CAT scan All seemed ok with that Am having left handed weakness, twitches and all over body spasms I have type 2 diabetes but I think this is more than that My blood sugar is ok and I am on medication for it. It’s all driving me crazy!!!!!
I was diagnosed with MS 2.5 years ago and 95%of my body has gone numb but not at the same time. Now the numbness is just in my arms, luckily I am a massage therapist or was, but I was able to do things on the numb parts and I would love to teach people with MS and how to release the “ epic cramp “ feeling. At the beginning I got a umm lazy eye and had to cross my eyes and look up to fix it, 59 Times a day it has not happened again. If you go to a massage therapist make sure you know that the therapist know what to do. As a massage therapist there are contraindications for MS there are many points that I was told NEVER TOUCH THEM! Well I said BS on that work them points extra verrrrrrry gently! And after a few weeks of working them they no longer are painful, well way less painful! If anyone out there wants to learn these techniques let me know! Thanks and “Be Well “
We do need an unbiased expert to look at us from an outside perspective, but a lot of these doctors are either too broadly educated, or are just jaded, and no longer trust what their patients are telling them. I have dealt with misdiagnosis when it came to my West Nile Virus, and Asperger's Syndrome, but now, at 32 years of age, I've been having new issues with slurred speech, double vision, weakness, numbness, and pins and needles in my limbs, extreme fatigue, digestive issues, difficulty concentrating, and more, and I've come across MS as a possible diagnosis, but I'm not sure. My family doctor doesn't seem worried about it at all, but I've gone blind in the past, and I've had multiple fainting spells, some of which led to mild head injuries. I just don't know where to go from here.
I am sorry to hear it was such a long journey, I pray your MS symptoms alleviate 🙏 I am having many strange symptoms too, all "fobbed-off" as anxiety. I've done all I can to alleviate anxiety, but there are so many strange symptoms that anxiety can't explain (and any anxiety I do get is triggered by said strange symptoms). I've already had an MRI that came back clear, and so many blood tests (thyroid function, b12, HIV, syphilis, the whole lot) all came back clear. I've been referred back to the Neurologist but it will most likely take months. I'm sorry to "splurge" all over the comment section, but I am currently suffering and there are so many things I want to do with my life at the moment (positive things like getting my Counselling diploma, finding a cool new job, building a relationship with a wonderful man)
Yes, I do understand how getting the diagnosis can be a relief. After years of not knowing what to call the symptoms or able to explain why I do weird things. It was a relief to simply have a word for it.
@@skiptowne61 I needed a referral from regular physician, to see a neurologist. The neurologist arranged for an MRI. Once the neurologist saw the lesions, he diagnosed me. Good luck with your journey.
@@brianschmitz2163 Where were these lesions? The brain? There were some spots on an MRI of her brain a few years ago and her Neurologist never said anything else about it. Her Doctor seems to have a listening/understanding problem of what she's going through.
@@skiptowne61 I have them on my brain and spine. Best of luck with your doctor. Don’t be afraid to make a change. The first time I went to a clinic, they called the police because they thought some drunk guy was walking through their door. (My walking can be bad) Your girlfriend can’t expect other people to be understanding, if she doesn’t understand herself. For me, the mental frustrations is one of the toughest parts.
Wow classic response, So Frustrating! I read that in the past Women were Never told about suspected M.S.-Yet. Husbands were told!We’ve come a long way -yet It’s a Relief to Know. Twenty years I lived with Symptoms... Finally got a diagnosis, Such a relief for this Former Nurse !
I can completely relate. I had that spinal injection when I was 17 too and it helped the numbness in my left leg but still had dizziness and weird involuntary jerking movements but was always dismissed by my doctors. Then I went in with my current GP because my memory has gotten so terrible as compared to a year ago and it was the first time MS was brought up to me. I’m scheduled for a brain MRI next week, and I can’t say that I’m looking forward to that diagnosis, but it is closure after all these years.
My first symptoms was my eyes too. I had perfect vision all my life. Never needed glasses. Overnight my vision became blurry and I could no longer discern details from afar. I've started having pins and needles in my feet and hands. I lost all feeling in one of my toes. Numbness in my flanks and baby finger on my right hand. Extreme dizziness for hours at a time. Now I have vertigo all the time.I have many spasms in my legs. I feel constant vibrations in them. I am currently seeing a neuro and my MRI is schedule in december. I am pretty sure it's MS at this point and when I do receive my diagnosis, I plan to go to the MS center in Toronto to get treatment.
@@Donan95 MRI's showed severe disc degeneration and stenosis in my neck between C4 and C7 and something similar in the lombar region between L4 and L3 with something touching the root nerve. I have not yet seen the neuro in reguards to the results. He's been away due to a family emergency so it's delayed my consultations. My appt is in March so I will know more. As far as I can see from the results, there are no lesions in my spinal cord. I continue to have the symptoms I've described above. I'm probably in store for more testing. I will ask my neuro for an MRI of my brain specifically to rule out MS this time. I 'm tired of feeling like this at this point. It's been ongoing since 2017.
10 years before diagnosis I’ve has 2 tias numbs limbs eye issues told it was stress lol until I lost vision in my right eye they did tests most came back pointing to ms still no help until I seen a amazing ms specialist looked at my mris bloods and evp and bam ms
Anyone else constantly cover up their confusion and loss of memory and slurred speech with “sorry I had a stroke last night”.... I’m always embarrassed I can’t remember names of close friends or something I just read. Doctors still haven’t diagnosed me but every flag points to MS. I’m exhausted from testing and no diagnoses.
Yip that's me. Had two MRI's in 2013/2014 after suffering from paralysis in L leg in the Netherlands in 2012 and the local GP looked all my back pain meds I had taken along and replied-"if you have no improvemernt using all of this I think you must go to Amsterdam University Hospital since I think you suffer from MS". Once back in SA I made appointment and Dean of Neurology said:"we we found some unspecified white matter on your brain-the good news is its not MS but we don't know what iit is". WTH? Constantly feel as though I'm standing in a pot of either ice cold or boiling water, my hands go into spasms for no rhyme or reason and I start stuttering when getting exited to my embarrasment. Sometimes my L hand's ring finger goes ice cold whilst the other fingers remain warm. A slipped L4/5 disk as well as bone against bone with hardly any carthalage between T3/4 was found during these MRI's (but since I'm allergic to iodine they didn't inject contrast dye) yet the orthopedist Dr.said he sees no pinched nerves and differs in Dean of Neurolgy's diagnosis.......One night after a new years gig in 2008 when I had packed my gear into my VW Golf and was about to drive home my legs were completey(!) paralyzed and I had to use my hands to control the brake and gas pedals-took my 3&1/2 hours to drive 50km home.......Does any of this sound normal?
I am a neuropshychologist in Brazil. Scientists have not yet found the cure, but if we look back 20yrs, lots been discovered, new ways to treat.. lifestyle, nutrition… and the vit D link that scientists are investigating.. the stem cell transplant.. so, there are lots of things going on! The diagnosis is to be taken seriously -meaning to see a neurologist and to start treatment as soon as possible. But hey! Lots can be done! Dont give up hope! Lots of love!
It is very important to see an MS specialist not a general neurologist. I feel sorry for Neil as it seemed nobody was hearing him. How can it take so long to diagnose , when with the identical symptoms, my daughter was diagnosed within 24 hours in a large training hospital in Melbourne Australia.
Have had M.S for over 30 years now and seeing a new Neurologist and berating my previous neurologist is only scronizing subjectively over MS. MS. leasons no focus on the whole process no assessments ever made unlike previous Neurologists from past years now at present time therefore is lacking MRI due, assessing low WBC levels extremely low,no treatment @ present time please help me find out how I need extra avenues to communicate exacerbations waxing and waining ^ over time untreated please respond
The challenges r/t years of systems from h/a in particular areas numbness left foot drop,tibial areas,pain in joints,drawing frequently in digital areas including hands s/p left Calcaneous frequent falls,vertigo. Ears ringing cognitive problems ex:
Thanks for sharing...wow, yours sounds so much like mine..I hope you are doing better, it ruined my life and still is..no support..they all think you're making it up.. because you look well..7 years it took..at least I understand it .it wasn't in my mind .
I am going through some very scary symptoms of I don't know what. About 3 times now my legs just stop working and flip and flop all over the place while I am sitting down waiting for it to pass. The first time it happened my speech was also slurred and I couldn't talk right. I have a bunch of tests that I have to have done at the hospital tomorrow and hope they will be able to let me know what's going on with me. Then there's the long wait for the results to get back to my doctors office. About a week before I know anything. Please keep me in yalls prayers and I wish everyone here the best. 🙏☺️
@@shirleymorales3161 no Ma'am but God has been so good to me. I'm still fighting symptoms but I know that Jesus is my Healer 🙏 thank you SO much for checking on me
Dr’s told me it was carpal tunnel when i had the pain and hand numbing i cant believe how they gave me so many steriod injections that blew my weight out and now im finding out i had been suffering from MS since that time! Its so sad its been getting worse every year i have so many symptoms numbin and always blamed it on my herniating disks and my cholesterol
So around the time I turned 19 I started getting these weird episodes. During the worst episodes my speech slurs so bad that no one can understand me. My legs are weak and jelly. Can’t really use my arms and hands because coordination is all off. Havnt been able to work a regular job in two years because it’s been so bad. Sometimes the episodes are mostly my legs but they can last days off and on. Sometimes I will get a normal day. I’m 26 now and my drs said it was my weight, or heart, or some other problem. Had so many tests done. Went to a neurologist several months ago and he did an mri but blew off my symptoms and just said it was vestibular migraines. Gave me headache medicine and each time I saw him I waited 40 minutes just to see him for 90 seconds. Recently got a referral to see a neurologist at u of m hospital in Michigan next month. Might just ask about ms and if it’s a possibility. It sucks not knowing what is going wrong with you and I just want answers
In 2010, I lost most feeling in my left leg just before I was scheduled to have back surgery to remove a herniated disc. After the surgery, I never regained feeling in my leg. Nerve conduction study says it’s related to the nerve root where the herniated discs was. In the last couple years, I’ve regained feeling in the leg except from the ankle down. But then a year ago, I started getting numbness and spasms in my left arm from my elbow to my pinky and ring finger. A month later, started getting a little numbness in my right pinky. Doctor says probably neck issue. Last year, my vision seemed to be getting worse (though a very healthy optic nerve) and recently have developed eustachian tube disorder and hearing loss in my right ear that wont go away. Now, I can’t be outside in heat without becoming very weak and sometimes nauseated. Starting to be worried that it could be MS.
Yeah the road of symptoms and dealing with Drs is very frustrating. It doesn’t help matters. Stress is around every corner and God forbid going through any serious live stressors like divorce and losing loved ones.
Oh my goodness I cannot believe that that doctor was so dramatic with you about it. I mean I get it it's not easy to tell people bad news but holy crap I've been mad! With him acting that way I would have thought I was actually actively dying. I was diagnosed with MS about a month ago. I'm very fortunate that my MS was caught during my first attack, but it was an absolute surprise. I could not believe it, I had never even considered multiple sclerosis being a possibility for me. No one in my family had it. And I don't really know anybody with it. The neurologist that I saw also needs work with his delivery. He was kind but my results were early, and they weren't confirmed. He didn't want to tell me and I was having none of it. I'm a registered nurse so he couldn't tell me some BS excuse to get me to get second MRI without me asking questions. I am looking forward to treatment because I know my disease is still very active. I still have not fully recovered and experience vertigo every day but it has significantly lessened.
I'm sorry you dealt with there. There are floor exercises you can do to help you with the vertigo. It's not easy but change your diet. I thought I was eating healthy(actually sort of was) Cut out sugar, eat more green leafy veg, consider nixing red meats, dairy, cut down on gluten. Take vitamin D & get sun. The whole side of my body was numb head to toe. what I mentioned helped for me. I even re-wrote recipes I liked for myself -then published it(on Amazon)
@@shirtenvy8870 thank you for the suggestions. I have fully recovered and I am doing well with my infusions. I am working slowly on changing my diet and exercise habits. I have recently discovered that intermittent fasting seems to be very helpful.
@@gracevallery5296 You are more than welcome! I have been doing the intermittent fasting for most of the time now. Every so often I will actually fast for a day or two..not everyone's cup of tea I know.. but to me is like rebooting the computer.
@@shirtenvy8870 I was actually surprised it seemed to help me. I only started doing it to see if I could lose a little bit of weight and but happened noticed it started helping me to feel better. I'm a Christian and after discovering this I thought "why of course it is! The Bible talks about it all the time" Lol!
@@gracevallery5296 Lol, yes there is a lot of fasting in the bible!Doing the fasting and cutting out most sugar made a huge difference for me, I lost a lot of weight without even trying to, I'm sure the walking & exercise helped too, I know it now(was never diagnosed with) I had insulin resistance, before I got diagnosed I couldn't lose weight no matter how much exercise I was doing!
In my first year, I was diagnosed in July 2021😥 Basically, I am lost in the numbness, headaches and tremors and everyone has advise for me, confusing because in Kenya this is not well known..... though my nurologist is ace, put me on retuximab infusion, so she kind of knows what she's doing 😊.... May God's perfect peace and grace abound! 🙏🏾 God bless you all🙏🏾
All these symptoms for a month..vertigo, high heart rate , numbness and tingling in my head and legs heart rate would go up BP would drop and I would almost pass out no appetite trouble thinking they ran no tests for ms said it was anxiety🤦🏽♀️ autoimmune runs on both sides of my family. Hoping the best but I don’t even know that the drs will do much since they diagnosed me with hear tachycardia. Still experiencing some symptoms here and there…
I totally get this Ive been to so many doctors about my symptoms. Every doctor tells me “its problem your hormones because your a woman” but then they dont check my hormone levels. Or “you are just stressed here take this pill” and im like its not working. Anti-depressants have never worked for me. I don’t understand if I’m continuing to have symptoms why doctors dont just check me for everything its not like they lose money.
Trying to find out what to do. Been diagnosed with MS 2 years ago and I'm holding on with my job doing A LOT OF OVERTIME. Had to tell work what I have some of my coworkers think I'm trying to play it of so I don't have to go up and down the stairs but that isn't the case. It's hard to even walk at times and if I do any lifting I get too tired. If anyone finds something out that could help my situation please let me know. Everything this guy is saying is practically what I had to go through
@@saraj871 Hi Sara. I'm really struggling at the moment with tight sore muscles in my upper body. I'm currently on diazepam for a week and have then been offered either amitriptyline or gabapentin. I am on the waiting list to see the neuro for the third time x How are things with you? Thank you for commenting. I had been trying to find this video again for reference x
@@saraj871 I have seen a different neuro as my symptoms have got worse. He is going to do nerve studies and is going to update my mris. If they are clear he will diagnose Functional neurological disorder and he said to ignore my symptoms and they will go away. So that's what I'm doing.
The beginning of my MS journey was confusion and blindness and 6 months later was the diagnosis and mistreatments, my nurse quitting after that 😞 left with many questions and absolutely no answers
I don't believe that no one left a comment! I have MS for 16 years, and no one believes me because I don't look like MS pasient! Of course I have severe pain and I can't run, I'm an athlete, (archery) and no one knows about it!
I don't believe you... just kidding- sucks when you have an 'invisible illness'- hard to make people understand- people look at you and think you are fine-
I was checked for 5 deferent autoimmune disorders, and of course for me/cfs , my MRI, lumbar puncture, and clinical symptoms,came positive for MS.(plus some other types of blood works). Thank you for your concern!
I'm still in journey of finding out my condition right now. Everytime I went to visit doctor, they give me different diagnosis and medication, but nothing works. My situation right now getting worse. I lose balance, numbness every time, fatigue, and tired easily
Yes ... I was told "slow ALS", R.A., Anxiety, Muscle Myopothy I can't recall all of the "answers"... I was told so much tested every which way. 5 yrs. later, .. 3, 6, 9,12 brain lesions in 4 MRI's & spinal tap "YOU HAVE MS". As horrid as my journey was,, I was devastated, yet somehow relieved. I'm so lucky, yet I would not wish this on anyone. Imagine sitting in a room & someone switching the lights on & off all day... it's often the same as MS.. SOMEONE TURNING DIFFT PARTS OF YR BODY OFF & ON. YOU CAN GO INSANE. . Educate yr. family , friends & mk sure you hv loving people around you. DON'T BE ALONE. I lost myself alone during the pandemic. I wish this young man everything good & that he beats the he×* out of his MS, as I wish thee same for everyone else with it. Live on 💙 !
I don't have MS (that I know of), but I had an extreme bout of vertigo (without ever having it before). Lasted 7 days straight without every stopping. Even when I slept my dreams were vertigo. This was followed by 3 days of vertigo that came and went. Lasted a few hours, felt a little better, repeat. Since this incident 4 years ago, I now get vertigo regularly. It can last from seconds up to an hour. The doctors I went to when this was first happening had no idea why it was happening. They just told me to rest. I never got a catscan or MRI for it. I really wish I had. I've been struggling with balance, coordination, and falling issues that are only getting worse. I live somewhere else now, but when I tell this story to primary care doctors, they never comment on it like it's real. As if I'm making it up and just ignore me. What gives?
How are you now? Can you ask for a referral to an ENT (Ear, Nose, Throat) specialist? The balance organ is inside the inner ear, if you can get to a specialist in that area they should be able to find the problem.
When I went to my Dr because of falls she said "what d u want me to do about it", she sent me to a falls clinic for the over 60s, as I was walking out from him he said anyone in family with problems I said I have a sister with ms....... then the tests started. Lesions in my head and one on the top of my spine. Positive bands in lumbar puncture
Slightly worried that I may be going through the early part of Niels story myself. Over the past few months, have noticed weird symptoms like randomly my leg going numb and pins and needles in my arm. Random sporadic muscle twitches. Also muscle pain when doing the most simple basic tasks, like whisking up mayonnaise. Now today, have just seen an ophthalmologist as I'm having flashing lights and a shadow over my left eye. She says I have optic neuritis and this can be a symptom of MS. Have a referral to a neurologist next week.
Same. Years ago I had a MRI with white spots on it. They said this spots looked like they were probably just small broken blood vessels. However the past 2 months my right leg is numb on the outside of it. I can feel but it’s definitely not a strong sensation I have an appointment and I really hope for us both we don’t have this
This is what I'm going through rn. I have gotten speech problems. They tried telling me it's because of stress or depression. I insisted on MRI. After a few neurological examinations from a Dr who is not a neurologist they finally agreed i prob have something wrong neurologically. We'll see what the results says.
@@ithinksamknows7549 not yet. I got trouble walking, spasms, muscle pulls and sometimes i get instant headache that just goes away after a minute or less. I also have like a vibration or something similar that comes and goes in my neck. So everything is pointing to MS. For a couple of years now I've had trouble holding things and sometimes my arms get weak. I get pins and needles in my feet or hands without even leaning on them. Sometimes i just hold my phone and it starts. So to me it really sounds like MS. They only did MRI on my brain without contrast and that one didn't show anything. I've insisted on a new MRI including my back and neck and with contrast on the brain. So far they won't let me have it. The problems walking, spasms, studders, weakness, muscle pulls etc all came pretty sudden and stayed for about 2 weeks. Now i feel fine except for that I'm tired even if i get 9h sleep. Sometimes i have issues sleeping so getting a good sleeping pattern is hard lol. I even fell in front of the Dr and needed help walking. Still they sent me home saying "we don't know what's wrong with you so it's for the best if you go home". So at home i used a crutch for almost a week because my balance was off on the left side. I live in Sweden and this is how the hospital treats people with possible neurological issues...
I have almost every symptoms of MS been unwell almost my whole life I'm 42 and I just want to know what's wrong with me I never felt normal it's so hard for Doctors to do any test to help diagnose.
the only test they had was lumbar puncture-unless something new has come up since 6yrs ago. I do not take any medications and healed myself with the foods I put in my mouth and exercise... take vitamin D also
An MRI of the brain and cervical spine is usually the first test to rule out or rule in MS. lesions will show up on the brain and or optic nerve and spinal cord. A Lumbar puncture is usually done also to look for oligoclonal bands in the cerebrospinal fluid.
I’ve been having issues for 2 years,-fatigue, clumsiness/dropping things, peripheral numbness, scratchy eyes, changing vision, now mild vertigo. Have fallen 3 times and sprained/broken both ankles. Am starting to worry it’s MS. I’m 67.
Go to the doctor and ask for an mri. It will save you time and money just getting it done and not fucking around with other docs or specialists or whatever. If it is not ms than you will have peace of mind and have a different starting point for a different diagnosis
@@xander2bass I'm currently taking kesimpta injections and to be honest I still feel pain but my body seems to be able to endure more. My podcast is based on my life story of letting fear steal my voice and the woman who took it back. But it talks about my trials of how I found out I was diagnosed and my journey to finding me. God bless you. I hope you watch them and stay strong-minded against the disease.
Benzodiazopines of any kind are probably the most insidious types of drug a medical professional could prescribe. They should never be prescribed long term. I can tell you from experience. I wish I had never been prescribed them to begin with.
Yep you are not kidding I'll never forget when I was 17 years old and a "mood doctor" down here in Florida prescribed me good old Xanax! Now let's fast forward to being 48 years and it's literally ruined my life.
I get lots of hot and cold spill sensations on my legs. Eye issues/contacts issues, lots of carpal tunnel hand clumsiness. Fucking annoying. MRI revealed tiny white Spots but no diagnosis or help from doctors. Took a walk in the park felt like I was walking sideways and fell. Then it all resolved w some intermittent symptoms waxing and waning. Still hovering here fairly unwell. My experience w EACH doctor was an epic waste of time.
Going for mri next week, my left side of face and head is getting number and more painful, eyelid so sore to even touch and weakness down left arm index finger. Memory loss dizzy spells , I already have an auto immune disease . It’s been going on for a year now and I kept putting it down to other things like sinus infection etc but my gut is telling me otherwise. I’m so scared that I might have ms but if I do it’s probably best I know sooner than later
God, I've been to doctor after doctor. I have so many diagnoses now, I can barely keep track of them all. I had paint in my joints, but I also had extreme pain in my legs and arms. I was diagnosed with RA and fibromyalgia. The RA was recinded. The pain in my arms and legs is over. Now I have chronic headaches and migraines, and a pseudo tumor in my left eye. Granted, that's from high CSF, but this issue has been going on for 5 years and my neurologist and none of the eye doctors ever noticed this pseudo tumor until the last year? My eye lids also forcefully shut, and I have ataxia in my legs and neurologist just said that's odd. Ok, so my eyes won't stay open, my face twitches and my legs drop out from underneath me, and all we got is that's odd? My mom has MS. I'm practically going bankrupt going to all of these doctors and no one is doing anything. I just want to cry most days.
Don’t give up Melissa, hopefully a specialist will find the cause soon. How upsetting though to be going through so much money to reach a proper diagnosis.
I've been diagnosed with MS and LEMS (Lambert-Eaton syndrome), they both have almost the same symptoms. I was supposed to start Ocrevus treatment for MS. But I just called (just before I posted this) and told them, "Let's hold off on that", until I can get a 2nd opinion. Half a dozen reasons: Having 2 diseases with the exact same symptoms? Possible, but not as likely: If I do have both, MS treatment alone is probably not going to do anything (Ocrevus does not treat LEMS); If I do take MS treatment and treatment for LEMS, could there be a reaction of the 2 drugs? I have heard a lot about MS being misdiagnosed (My neurologist is not a specialist in MS). Everyone I have watched on TH-cam says they were given a choice of treatment. Not me! We are putting you on Ocrevus. End of story. Throwing the dice for all the side effects I've heard about Ocrevus when I'M thinking it may not work anyway because of LEMS (if I even have that?). Yeah....NO!
Hi glutenfreee gaming, I hope your doing well, Please turn to Jesus He loves you and He can heal you, He gave me a miracle and healed me when no doctors could really help me, If you call out to Him and ask Him into your heart to be your personal Lord and Saviour I know your life will change for the better, Romans 10:13 For whosoever shall call upon the name of the Lord shall be saved, life is so difficult when your living with an illness that can overtake your life I know, but there is Hope and His name is Jesus, God bless
You still didn’t say out of all your test, which one it was that helped them diagnose you. I know you had Neurological problems, but was it the MRI on the brain??
All along the way these incompetent doctors are taking the patients money. They should have to pay the money back, and there should be a bank where people can look up their misdiagnosis! It's all about the money these days.
@@supplegrey3613 get a copy of your blood work and look up what nongmo/organic foods you need to consume to bring you counts to midline numbers. Read ALL the side effects of each prescription and understand they can react to other prescriptions differently. If your are on statins be sure to do an indepth search of pros and cons and why's of this drug. And understand a CHRONIC condition is money in the bank for the medical profession, CURES will not bring in that pot of gold. I am 73 years old, I have lost over 50 lbs., graduated college at 71, and became my own health champion, because I wanted to base my decisions on untainted information, and I have my own best interest at heart. I am on one medication. Premarin Creme, I managed to eliminate all other medications through meditation, keto diet (Sten Eckberg), Wim Hof breathing techniques. I found it to be easy. I eliminated white sugar. I was depressed and suicidal my whole life and that ALL WENT AWAY with the white sugar!!!!! My mother suffered her whole life with depression and was a sugar addict (as am I), when I realized what was causing her sorrow my heart aches even more for her. Her whole life!!! The sugar has done this to thousands upon thousands of people suffering from morbid obesity, who are probably trying to eat away their depression with the same drug that is holding them down!!! Meanwhile this is a "LEGAL DRUG" making billions and billions of $$$$ while the uneducated suffer their mighty blows in their wallets for food making them sicker, and the medical bills, and prescriptions!!! The wheels on this bus go round and round, (the tires may be named doctor, pharmaceutical companies, fertilizer companies, unhealthy foods) they keep the public distracted while they suck their wallets dry. Never stop seeking answers. Ask and it shall be given is true. The caveat is you have to want and deserve what your asking for, and know you already have it. YOU HAVE THE POWER! IT'S INSIDE!!! 💜
Been having ms symptoms for 20 plus years. Been to more Doctors appointments then I can recall . Have been told by a geneticist he thinks it’s MS but my neurologist has not diagnosed me with anything after seeing him for ten months .
Find a new Neurologist who specializes in MS. Your current neurologist is not diagnosing , he too is just treating symptoms. If he continues to see you he must see a neurological deficit, but he has not done the diagnostic tests. I am not being critical..I get it. I have walked your walk. Good Luck,to you ,wishing you answers, and a healthy future.
Since I posted 2 months. Ago my symptoms have almost all gone away.I have dealt with These flareups five or six times in my life and they usually come back every 3 to 5 years I’ll just keep pushing forward until the next flare up
Keldor Miro yes. Along with urinating problems dizziness eye pain shooting pain through out body muscle weakness muscle spasms trouble walking drop foot cognitive problems Numbness and tingling throughout hands and feet other symptoms .Like I said in my earlier post I’m feeling almost 100% back to normal just fear the day that the symptoms come back.Been told by two different specialist they believe it’s a ms and neurologist just isn’t onboard yet
No one could possibly understand this disease unless you have ms like myself. It’s indescribable. Everyday is different and really tough. God bless us all. I understand what this gentleman is talking about and understand how he feels
I've had MS since I was 20 and now I'm 63. Life has it's ups and downs. I have more good days than bad days. I don't use any medication. I'm an upbeat, positive person and I think that's helps a lot with everything in life. I hope everyone with MS has a good support of family and friends. I have a great wife and that makes the biggest difference in my life. Best wishes to everyone.
The answer for everything is always "iTs AnXiEtY"
Right I know these stupid doctors always blaming everything on anxiety when that's not even true
I went to 3 doctors and they all blew off my symptoms as anxiety. At this point I'm completely disillusioned with the medical system. If I drop dead, I drop dead. If I go blind, I go blind. I've just accepted the fact that I'm alone. I wish I didn't live next to this multi-million dollar hospital while suffering. If I was in the wilderness, I could accept the fact that this is just nature taking its course...but knowing that I just don't have the resources to incentivise the people right next to me to take me seriously is depressing. The truth is: most doctors just don't care. Most of them got into the profession because they were interested in medical science and the money. I would be less resentful if the law didn't create this medical class through regulation. They should deregulate the medical system and allow some true healers that want to help people practice medicine....instead of all these med school scientists who don't care about people.
@Alex Levi ?
@Bryce Emanuel ?
George I hope you’re feeling better now and have found a really good Neurologist. It’s hard coming to that point of acceptance regarding your diagnosis. I got diagnosed 6 weeks ago and am currently looking at different treatment options, but I’m happy I have a really kind Neurologist who has my best interests at heart.
Hey George! I've been deep in that frame of mind so I know exactly what you were feeling when you wrote this
Are things still bad for you? Do you need anything at all?
Try and find an neurologist specializing in Ms or see how many ms patients he/she treats. Your insurance has a provider directory and list specialties you want to find a neurologist who specializes in Ms or call to find out. Call the Ms society for resources and the Ms foundation, don’t give up
You can literally hear the slight tremble in his voice as he is telling his story. I can relate to that so much, I still find it extremely difficult to talk about.
A story that resonates with many of us: eye trouble, misdiagnosis, and more. Hang in there man!
Hi Spencer's MS Story, How's thing's? I myself know what its like living with a illness that the doctors couldn't really help me with, Then Jesus gave me a miracle and healed me, Please turn to Jesus He loves you, The bible tells us in Romans 10:13 For whosoever shall call upon the name of the Lord shall be saved, Its as easy as asking Jesus into your heart to be your personal Lord and Saviour, Jesus will answer you, I know this because He answered me when I called out to Him, God bless
@@jesussaves1827 hello brother how r you now , I've also got this, is there any cure of it, or we r class to cure ms? I just realised that human discoverd matching that can look 13billon yr in past, but there is no cure of some disease, a varse percentage of people are suffering from those disease, and it's worsen then he'll, why don't we just try to do something..
I was hospitalized in 2014 for having anaemia, but I w as experiencing other symptoms while I was there. A neurologist did some testing like an MRI and explained to me that the endings of cords looked like a rat had chewed on them and I lashes on my spine cord that displayed everytime I had a flare-up. He asked for a spinal tap to confirm his diagnosis. It came back that he was correct. This hasn't been an easy journey for me (or none of us). This chronic disease is taking a lot of people's dignity and self respect! But I refuse to give up!
Hang in there girl, fight the big fight, you got this!!
Thank you for sharing.
I went through much the same thing.
It happened to me for about 5 years.
Until a Neurologist sent me to have MRI.
When I went to see him.
He told me there is light at the end of the tunnel.
It went through my Wow!
This great.
Then he told me that I had MS.
You could have knocked me over with a feather.
That was almost 29 years ago.
I am now coming up to 79.
It has not been easy.
There is a good life still there when have MS.
I wish everyone all the best and happiness.
I’ve never been so moved by a story before. Just looking at all the emotion in his face and the tears he’s trying to hold back. He looks terrified. I hope he’s doing ok now
I understand… but am still waiting for a diagnosis.
@@lorraineophoff4984 any updates
Was diagnosed in1996. Now it’s more severe but I’m positive and keep exercising. My life has changed so dramatically. Many positives
Can u able to walk?
@@Googleuser-lq5ii yes
How normal is your life
Are you able to work
and many many more positives coming to you Lynn, God Bless 💓💓💓
Thats the spirit! Keep on keeping on ...
I am on day 6 of testing and today was the first time I heard MS.
To be honest, I feel the same way. Since 2015 I have waves of feeling awful and now everything makes sense. If it's MS, okay. Great. I have a diagnosis... FINALLY! Now... lets get the best treatment possible!
Good luck!
Hi Artistries, If you get the diagnose you start searching for the best treatment.... and after some years you find out the is no such best treatment. You can make a bet like roulet. There are 10 DMTs and 40 diets. Maybe one works for you, maybe none of them. Maybe you do not need to do anything to stay well.
How are you now?
I'm so sorry! Wow I cant believe how the doctors missed ms, hugs
I’m so sorry to hear you have ms, I wish you the best. Blessings to you and your family.
Thank you for sharing your story!
Well said ! Well said brother good luck to you I wish you and your family nothing but the best.
thank you for your very heartful explanation of your journey.
How we can relate!!! Thanks Neil for story of the journey to finally be diagnosed
Amazing guy to share all this and it was so interesting to hear his journey with MS. All the best to him.
You are so brave! Thank you for sharing you experience. God bless you😇
Thank you so much for sharing your journey. 😘
Im in MS in Iraq
Thank you for telling your story.
Thanks to Neil for sharing his story and to MS TeamWorks for posting it.
Great video! This will help so many people
I’ve been thinking about you a lot lately and praying for you sending comforting hugs n prayers n thanking you for sharing your journey it has to be very hard. I was on a vent for 3 weeks after I broke my neck it wasn’t fun so I somewhat understand how uncomfortable that is when you have to be suctioned while on a vent. You are amazing sweetheart 💕💕💕💕🙏💕🙏🙏🙏
My heart goes out to you, Neil.
What a roller coaster. Your story will help so many. You are very courageous. So glad you were persistent & wow, what a story teller! Good on you buddy!
Thank you so much!
My GP was great in ordering the MRI fairly quickly after I started experiencing symptoms (went in for debilitating vertigo in March, went back for a dead left leg in June, got referred to a neurologist in July). Your reflections on how they broke the news made me giggle. My GP handed me a box of Kleenex when she told me her suspicions ... the specialist was much more pragmatic and open, and made me feel much better about it! I agree; MS is a little scary, but getting a diagnosis was such a relief! Now I know what I’m up against!
Emily similar situation, like urself i am very lucky to have a fantastic GP for the past 14yrs she made the call for MRI last year and i just had my diagnosis last month. Wishing you all the best in the future
A great video for us MSers. Thank you for sharing! 🙌🧡
thank you for this video , your courage and bravery. its gave so much value and hope
Very well explained.
Drs unfortunately learn from textbooks. They do not listen enough to their patients. They may hear what they say but do not fully understand what is being said.
Thanks for sharing gives help to others ❤️
Hope you get better God Bless 🙏❤️🙏
the fact that his father had ms and the doctor completely ignored it...
Most general neurologist really don't have a clue about MS. It's only once you see one specialized in that area that you will get answers.
@Joe not always but it can be
Yet a crew of Neurologists
came to Ajo to visit siblings that all have M.S.
A lot of doctors are useless!!!!
Or the fact his father had ms and he didn’t push for that himself every time also didn’t help. That should have been a red flag from the beginning for him.
Amazing man god bless you 🙏
Thank you Neil.
Thank you for sharing your journey. My story is similar to yours. Very emotional diagnosis I received June 2019 MS. Blessings to all. 🧡
Thanks for sharing
Same here. Just got diagnosed Ms 2 mo. Ago 45yr.old. since 28 yr. Old lost vision, vertigo, vision problems, migraines since high school. Alway symptoms disappeared magically, never diagnosed. I was actually happy to have a diagnosis, now I can move forward w/ life. Thought I was crazy.
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What a terrible health system you have to have gone through the years virtually dismissed and always without diagnosis and then the delivery of the diagnosis was just awful. Thank goodness you sought out the MS Specialist advice..... my mother diagnosed MS age 44 and lived to 86 yrs with relapsing remitting MS ... you can live a full life with MS.
Great Video.
That was so informative.
Thank you for sharing your story
I hope that you are well and managing your symptoms
I have been experiencing escalating symptoms since last summer/fall
I finally had a brain MRI and am awaiting the results
It took 6 months to get a MRI
Now I need to be referred to a neurologist
Two weeks ago I woke up with complete numbness down the left side of my body
I went to emergency and they did CAT scan
All seemed ok with that
Am having left handed weakness, twitches and all over body spasms
I have type 2 diabetes but I think this is more than that
My blood sugar is ok and I am on medication for it.
It’s all driving me crazy!!!!!
How are you doing now?
M
I was diagnosed with MS 2.5 years ago and 95%of my body has gone numb but not at the same time. Now the numbness is just in my arms, luckily I am a massage therapist or was, but I was able to do things on the numb parts and I would love to teach people with MS and how to release the “ epic cramp “ feeling. At the beginning I got a umm lazy eye and had to cross my eyes and look up to fix it, 59 Times a day it has not happened again. If you go to a massage therapist make sure you know that the therapist know what to do. As a massage therapist there are contraindications for MS there are many points that I was told NEVER TOUCH THEM! Well I said BS on that work them points extra verrrrrrry gently! And after a few weeks of working them they no longer are painful, well way less painful! If anyone out there wants to learn these techniques let me know! Thanks and “Be Well “
Hospitals feel like the middle of the ocean... water, water, everywhere, and not a drop to drink
I feel sorry for him. Patients sometimes know themselves better than doctors
Sometimes? We know our bodies better than doctors do. Our bodies have housed us all of the days of our lives.
We do need an unbiased expert to look at us from an outside perspective, but a lot of these doctors are either too broadly educated, or are just jaded, and no longer trust what their patients are telling them. I have dealt with misdiagnosis when it came to my West Nile Virus, and Asperger's Syndrome, but now, at 32 years of age, I've been having new issues with slurred speech, double vision, weakness, numbness, and pins and needles in my limbs, extreme fatigue, digestive issues, difficulty concentrating, and more, and I've come across MS as a possible diagnosis, but I'm not sure. My family doctor doesn't seem worried about it at all, but I've gone blind in the past, and I've had multiple fainting spells, some of which led to mild head injuries. I just don't know where to go from here.
So true
Yes. And doctors hate that.
I am sorry to hear it was such a long journey, I pray your MS symptoms alleviate 🙏 I am having many strange symptoms too, all "fobbed-off" as anxiety. I've done all I can to alleviate anxiety, but there are so many strange symptoms that anxiety can't explain (and any anxiety I do get is triggered by said strange symptoms). I've already had an MRI that came back clear, and so many blood tests (thyroid function, b12, HIV, syphilis, the whole lot) all came back clear. I've been referred back to the Neurologist but it will most likely take months. I'm sorry to "splurge" all over the comment section, but I am currently suffering and there are so many things I want to do with my life at the moment (positive things like getting my Counselling diploma, finding a cool new job, building a relationship with a wonderful man)
God bless you
How are you now?
Yes, I do understand how getting the diagnosis can be a relief.
After years of not knowing what to call the symptoms or able to explain why I do weird things. It was a relief to simply have a word for it.
My g/f has most of the symptoms of MS and wants a clear diagnosis.
How did you get yours?
@@skiptowne61 I needed a referral from regular physician, to see a neurologist.
The neurologist arranged for an MRI.
Once the neurologist saw the lesions, he diagnosed me.
Good luck with your journey.
@@brianschmitz2163
Where were these lesions?
The brain?
There were some spots on an MRI of her brain a few years ago and her Neurologist never said anything else about it.
Her Doctor seems to have a listening/understanding problem of what she's going through.
@@skiptowne61 I have them on my brain and spine.
Best of luck with your doctor. Don’t be afraid to make a change.
The first time I went to a clinic, they called the police because they thought some drunk guy was walking through their door. (My walking can be bad) Your girlfriend can’t expect other people to be understanding, if she doesn’t understand herself.
For me, the mental frustrations is one of the toughest parts.
@@brianschmitz2163 Thank you for the words of encouragement Brian.
It's like she's putting a puzzle together.
Wow classic response, So Frustrating! I read that in the past Women were Never told about suspected M.S.-Yet. Husbands were told!We’ve come a long way -yet It’s a Relief to Know. Twenty years I lived with Symptoms... Finally got a diagnosis, Such a relief for this Former Nurse !
I can completely relate. I had that spinal injection when I was 17 too and it helped the numbness in my left leg but still had dizziness and weird involuntary jerking movements but was always dismissed by my doctors. Then I went in with my current GP because my memory has gotten so terrible as compared to a year ago and it was the first time MS was brought up to me. I’m scheduled for a brain MRI next week, and I can’t say that I’m looking forward to that diagnosis, but it is closure after all these years.
Out of interest was it ms?
Any updates?
Just curious: was it MS?
My first symptoms was my eyes too. I had perfect vision all my life. Never needed glasses. Overnight my vision became blurry and I could no longer discern details from afar. I've started having pins and needles in my feet and hands. I lost all feeling in one of my toes. Numbness in my flanks and baby finger on my right hand. Extreme dizziness for hours at a time. Now I have vertigo all the time.I have many spasms in my legs. I feel constant vibrations in them. I am currently seeing a neuro and my MRI is schedule in december. I am pretty sure it's MS at this point and when I do receive my diagnosis, I plan to go to the MS center in Toronto to get treatment.
How did it go?
@@Donan95 MRI's showed severe disc degeneration and stenosis in my neck between C4 and C7 and something similar in the lombar region between L4 and L3 with something touching the root nerve. I have not yet seen the neuro in reguards to the results. He's been away due to a family emergency so it's delayed my consultations. My appt is in March so I will know more. As far as I can see from the results, there are no lesions in my spinal cord. I continue to have the symptoms I've described above. I'm probably in store for more testing. I will ask my neuro for an MRI of my brain specifically to rule out MS this time. I 'm tired of feeling like this at this point. It's been ongoing since 2017.
@@Kitkat2870 dude, that is some serious back degeneration, did you have a career in power lifting or construction?
@@Kitkat2870 how did it go darling, did you have your follow up appointment to discuss the results of the MRI?
Bro how old where you when this happened?
I’m 23 and was diagnosed 2 years ago I have a story to tell it’s started off as a located disk and went all the way to sympathy pains
10 years before diagnosis I’ve has 2 tias numbs limbs eye issues told it was stress lol until I lost vision in my right eye they did tests most came back pointing to ms still no help until I seen a amazing ms specialist looked at my mris bloods and evp and bam ms
Your story is very common. I'm so glad you found an MS specialist. Best of luck to you in your journey!
Please share the name of your ms specailist
@@sugarlips5954 Dr Dan oneil Ms specialist Sydney Australia Liverpool hospital
I know how you feel . Right now I'm diagnosed with MS and I'm just 22 years old.
With Dr Okolo herbal medicine formula you can get cure from MS
Email
(drokolosolutioncenter@gmail.com)
Damn I’m sorry man, how are you doing at the moment?
I can relate 100% 🙁🙏🏻
Anyone else constantly cover up their confusion and loss of memory and slurred speech with “sorry I had a stroke last night”.... I’m always embarrassed I can’t remember names of close friends or something I just read. Doctors still haven’t diagnosed me but every flag points to MS. I’m exhausted from testing and no diagnoses.
I FEEL YOU!!!! i feel like ive had every test in the book done except for ms, no clue why they havn't tested me yet..
I can relate to you...
How did it go? Did you have MS?
How old are you my friend?
Yip that's me. Had two MRI's in 2013/2014 after suffering from paralysis in L leg in the Netherlands in 2012 and the local GP looked all my back pain meds I had taken along and replied-"if you have no improvemernt using all of this I think you must go to Amsterdam University Hospital since I think you suffer from MS". Once back in SA I made appointment and Dean of Neurology said:"we we found some unspecified white matter on your brain-the good news is its not MS but we don't know what iit is". WTH? Constantly feel as though I'm standing in a pot of either ice cold or boiling water, my hands go into spasms for no rhyme or reason and I start stuttering when getting exited to my embarrasment. Sometimes my L hand's ring finger goes ice cold whilst the other fingers remain warm. A slipped L4/5 disk as well as bone against bone with hardly any carthalage between T3/4 was found during these MRI's (but since I'm allergic to iodine they didn't inject contrast dye) yet the orthopedist Dr.said he sees no pinched nerves and differs in Dean of Neurolgy's diagnosis.......One night after a new years gig in 2008 when I had packed my gear into my VW Golf and was about to drive home my legs were completey(!) paralyzed and I had to use my hands to control the brake and gas pedals-took my 3&1/2 hours to drive 50km home.......Does any of this sound normal?
I am a neuropshychologist in Brazil. Scientists have not yet found the cure, but if we look back 20yrs, lots been discovered, new ways to treat.. lifestyle, nutrition… and the vit D link that scientists are investigating.. the stem cell transplant.. so, there are lots of things going on! The diagnosis is to be taken seriously -meaning to see a neurologist and to start treatment as soon as possible. But hey! Lots can be done! Dont give up hope! Lots of love!
It is very important to see an MS specialist not a general neurologist. I feel sorry for Neil as it seemed nobody was hearing him.
How can it take so long to diagnose , when with the identical symptoms, my daughter was diagnosed within 24 hours in a large training hospital in Melbourne Australia.
Have had M.S for over 30 years now and seeing a new Neurologist and berating my previous neurologist is only scronizing subjectively over MS. MS. leasons no focus on the whole process no assessments ever made unlike previous Neurologists from past years now at present time therefore is lacking MRI due, assessing low WBC levels extremely low,no treatment @ present time please help me find out how I need extra avenues to communicate exacerbations waxing and waining ^ over time untreated please respond
The challenges r/t years of systems from h/a in particular areas numbness left foot drop,tibial areas,pain in joints,drawing frequently in digital areas including hands s/p left Calcaneous frequent falls,vertigo. Ears ringing cognitive problems ex:
Thanks for sharing...wow, yours sounds so much like mine..I hope you are doing better, it ruined my life and still is..no support..they all think you're making it up.. because you look well..7 years it took..at least I understand it .it wasn't in my mind .
I am going through some very scary symptoms of I don't know what. About 3 times now my legs just stop working and flip and flop all over the place while I am sitting down waiting for it to pass. The first time it happened my speech was also slurred and I couldn't talk right. I have a bunch of tests that I have to have done at the hospital tomorrow and hope they will be able to let me know what's going on with me. Then there's the long wait for the results to get back to my doctors office. About a week before I know anything. Please keep me in yalls prayers and I wish everyone here the best. 🙏☺️
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His Beloved Hope your all good now ?
@@shirleymorales3161 no Ma'am but God has been so good to me. I'm still fighting symptoms but I know that Jesus is my Healer 🙏 thank you SO much for checking on me
Dr’s told me it was carpal tunnel when i had the pain and hand numbing i cant believe how they gave me so many steriod injections that blew my weight out and now im finding out i had been suffering from MS since that time! Its so sad its been getting worse every year i have so many symptoms numbin and always blamed it on my herniating disks and my cholesterol
Thank you Neil. How are you?
So around the time I turned 19 I started getting these weird episodes. During the worst episodes my speech slurs so bad that no one can understand me. My legs are weak and jelly. Can’t really use my arms and hands because coordination is all off. Havnt been able to work a regular job in two years because it’s been so bad. Sometimes the episodes are mostly my legs but they can last days off and on. Sometimes I will get a normal day. I’m 26 now and my drs said it was my weight, or heart, or some other problem. Had so many tests done. Went to a neurologist several months ago and he did an mri but blew off my symptoms and just said it was vestibular migraines. Gave me headache medicine and each time I saw him I waited 40 minutes just to see him for 90 seconds. Recently got a referral to see a neurologist at u of m hospital in Michigan next month. Might just ask about ms and if it’s a possibility. It sucks not knowing what is going wrong with you and I just want answers
How are you?
How did it go?
You Tube Alan MacDonald: MS is a parasitosis
In 2010, I lost most feeling in my left leg just before I was scheduled to have back surgery to remove a herniated disc. After the surgery, I never regained feeling in my leg. Nerve conduction study says it’s related to the nerve root where the herniated discs was. In the last couple years, I’ve regained feeling in the leg except from the ankle down. But then a year ago, I started getting numbness and spasms in my left arm from my elbow to my pinky and ring finger. A month later, started getting a little numbness in my right pinky. Doctor says probably neck issue. Last year, my vision seemed to be getting worse (though a very healthy optic nerve) and recently have developed eustachian tube disorder and hearing loss in my right ear that wont go away. Now, I can’t be outside in heat without becoming very weak and sometimes nauseated. Starting to be worried that it could be MS.
How did it go? Did you get tested?
Really interested in this as well. Any new information?
Set up an appointment
Did you get a diagnose?
Yeah the road of symptoms and dealing with Drs is very frustrating. It doesn’t help matters. Stress is around every corner and God forbid going through any serious live stressors like divorce and losing loved ones.
Oh my goodness I cannot believe that that doctor was so dramatic with you about it. I mean I get it it's not easy to tell people bad news but holy crap I've been mad! With him acting that way I would have thought I was actually actively dying. I was diagnosed with MS about a month ago. I'm very fortunate that my MS was caught during my first attack, but it was an absolute surprise. I could not believe it, I had never even considered multiple sclerosis being a possibility for me. No one in my family had it. And I don't really know anybody with it. The neurologist that I saw also needs work with his delivery. He was kind but my results were early, and they weren't confirmed. He didn't want to tell me and I was having none of it. I'm a registered nurse so he couldn't tell me some BS excuse to get me to get second MRI without me asking questions. I am looking forward to treatment because I know my disease is still very active. I still have not fully recovered and experience vertigo every day but it has significantly lessened.
I'm sorry you dealt with there. There are floor exercises you can do to help you with the vertigo. It's not easy but change your diet. I thought I was eating healthy(actually sort of was) Cut out sugar, eat more green leafy veg, consider nixing red meats, dairy, cut down on gluten. Take vitamin D & get sun. The whole side of my body was numb head to toe. what I mentioned helped for me. I even re-wrote recipes I liked for myself -then published it(on Amazon)
@@shirtenvy8870 thank you for the suggestions. I have fully recovered and I am doing well with my infusions. I am working slowly on changing my diet and exercise habits. I have recently discovered that intermittent fasting seems to be very helpful.
@@gracevallery5296 You are more than welcome! I have been doing the intermittent fasting for most of the time now. Every so often I will actually fast for a day or two..not everyone's cup of tea I know.. but to me is like rebooting the computer.
@@shirtenvy8870 I was actually surprised it seemed to help me. I only started doing it to see if I could lose a little bit of weight and but happened noticed it started helping me to feel better. I'm a Christian and after discovering this I thought "why of course it is! The Bible talks about it all the time" Lol!
@@gracevallery5296 Lol, yes there is a lot of fasting in the bible!Doing the fasting and cutting out most sugar made a huge difference for me, I lost a lot of weight without even trying to, I'm sure the walking & exercise helped too, I know it now(was never diagnosed with) I had insulin resistance, before I got diagnosed I couldn't lose weight no matter how much exercise I was doing!
In my first year, I was diagnosed in July 2021😥 Basically, I am lost in the numbness, headaches and tremors and everyone has advise for me, confusing because in Kenya this is not well known..... though my nurologist is ace, put me on retuximab infusion, so she kind of knows what she's doing 😊.... May God's perfect peace and grace abound! 🙏🏾 God bless you all🙏🏾
Contact doctor Akhigbe for your MS cure with his herbal
Message him on Whats App now
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You Tube Alan MacDonald: MS is a parasitosis
Om! I never thought there was a name for my symptoms 😢
All these symptoms for a month..vertigo, high heart rate , numbness and tingling in my head and legs heart rate would go up BP would drop and I would almost pass out no appetite trouble thinking they ran no tests for ms said it was anxiety🤦🏽♀️ autoimmune runs on both sides of my family. Hoping the best but I don’t even know that the drs will do much since they diagnosed me with hear tachycardia. Still experiencing some symptoms here and there…
I totally get this Ive been to so many doctors about my symptoms. Every doctor tells me “its problem your hormones because your a woman” but then they dont check my hormone levels. Or “you are just stressed here take this pill” and im like its not working. Anti-depressants have never worked for me. I don’t understand if I’m continuing to have symptoms why doctors dont just check me for everything its not like they lose money.
I lived with undiagnosed MS for 46 years.
Trying to find out what to do. Been diagnosed with MS 2 years ago and I'm holding on with my job doing A LOT OF OVERTIME. Had to tell work what I have some of my coworkers think I'm trying to play it of so I don't have to go up and down the stairs but that isn't the case. It's hard to even walk at times and if I do any lifting I get too tired. If anyone finds something out that could help my situation please let me know. Everything this guy is saying is practically what I had to go through
Hi Leo
Did they give you any medication?
I hope you are doing better.
I'm just waiting for my tests for ms.
This sounds exactly like me. I had to stop wearing contacts, then had numbness and spasms and vertigo. But all of my tests have been clear.
Hi Rachel, how r u now? Did u do another test. Wish u the best.
@@saraj871 Hi Sara. I'm really struggling at the moment with tight sore muscles in my upper body. I'm currently on diazepam for a week and have then been offered either amitriptyline or gabapentin. I am on the waiting list to see the neuro for the third time x How are things with you? Thank you for commenting. I had been trying to find this video again for reference x
@@saraj871 I have seen a different neuro as my symptoms have got worse. He is going to do nerve studies and is going to update my mris. If they are clear he will diagnose Functional neurological disorder and he said to ignore my symptoms and they will go away. So that's what I'm doing.
The beginning of my MS journey was confusion and blindness and 6 months later was the diagnosis and mistreatments, my nurse quitting after that 😞 left with many questions and absolutely no answers
how are you now? Hope youre feeling better
I don't believe that no one left a comment!
I have MS for 16 years, and no one believes me because I don't look like MS pasient! Of course I have severe pain and I can't run, I'm an athlete, (archery) and no one knows about it!
Do you take treatment ?
maybe you might have ME/CFS? It can show some similar symptoms!
Good Luck
I don't believe you... just kidding- sucks when you have an 'invisible illness'- hard to make people understand- people look at you and think you are fine-
I'm having an intravenous immunsupresion drag (edoxan)!
I was checked for 5 deferent autoimmune disorders, and of course for me/cfs , my MRI, lumbar puncture, and clinical symptoms,came positive for MS.(plus some other types of blood works).
Thank you for your concern!
I'm still in journey of finding out my condition right now. Everytime I went to visit doctor, they give me different diagnosis and medication, but nothing works. My situation right now getting worse. I lose balance, numbness every time, fatigue, and tired easily
Me too
I'm worried
Yes ... I was told "slow ALS", R.A., Anxiety, Muscle Myopothy I can't recall all of the "answers"... I was told so much tested every which way. 5 yrs. later, .. 3, 6, 9,12 brain lesions in 4 MRI's & spinal tap "YOU HAVE MS". As horrid as my journey was,, I was devastated, yet somehow relieved. I'm so lucky, yet I would not wish this on anyone. Imagine sitting in a room & someone switching the lights on & off all day... it's often the same as MS.. SOMEONE TURNING DIFFT PARTS OF YR BODY OFF & ON. YOU CAN GO INSANE. . Educate yr. family , friends & mk sure you hv loving people around you. DON'T BE ALONE. I lost myself alone during the pandemic. I wish this young man everything good & that he beats the he×* out of his MS, as I wish thee same for everyone else with it. Live on 💙 !
I don't have MS (that I know of), but I had an extreme bout of vertigo (without ever having it before). Lasted 7 days straight without every stopping. Even when I slept my dreams were vertigo. This was followed by 3 days of vertigo that came and went. Lasted a few hours, felt a little better, repeat. Since this incident 4 years ago, I now get vertigo regularly. It can last from seconds up to an hour. The doctors I went to when this was first happening had no idea why it was happening. They just told me to rest. I never got a catscan or MRI for it. I really wish I had. I've been struggling with balance, coordination, and falling issues that are only getting worse. I live somewhere else now, but when I tell this story to primary care doctors, they never comment on it like it's real. As if I'm making it up and just ignore me. What gives?
Cus they are human and we humans can be massive dicks educated or not
Menierrre’s disease? Doesn’t sound like MS!
@@mariekatherine5238 I don't have Menierre's Diseasem already been assessed. :/
هل تعرفين اللغة العربية؟؟
How are you now? Can you ask for a referral to an ENT (Ear, Nose, Throat) specialist? The balance organ is inside the inner ear, if you can get to a specialist in that area they should be able to find the problem.
i have ppms 3 years now and still no treatment neuro keeps saying i am tired
When I went to my Dr because of falls she said "what d u want me to do about it", she sent me to a falls clinic for the over 60s, as I was walking out from him he said anyone in family with problems I said I have a sister with ms....... then the tests started. Lesions in my head and one on the top of my spine. Positive bands in lumbar puncture
In the mri and cat scans, did you show lesions
The same thing happen to with doctors I wonder why it's always the right leg .
Slightly worried that I may be going through the early part of Niels story myself.
Over the past few months, have noticed weird symptoms like randomly my leg going numb and pins and needles in my arm. Random sporadic muscle twitches. Also muscle pain when doing the most simple basic tasks, like whisking up mayonnaise. Now today, have just seen an ophthalmologist as I'm having flashing lights and a shadow over my left eye. She says I have optic neuritis and this can be a symptom of MS. Have a referral to a neurologist next week.
Same. Years ago I had a MRI with white spots on it. They said this spots looked like they were probably just small broken blood vessels. However the past 2 months my right leg is numb on the outside of it. I can feel but it’s definitely not a strong sensation
I have an appointment and I really hope for us both we don’t have this
@@fishels3895 how’d it go for you guys? Any diagnosis of MS?
@@henrytorres9855 no just a pinched nerve. Lasted FOREVER. So great full tho
This is what I'm going through rn. I have gotten speech problems. They tried telling me it's because of stress or depression. I insisted on MRI. After a few neurological examinations from a Dr who is not a neurologist they finally agreed i prob have something wrong neurologically. We'll see what the results says.
did you get diagnosed with ms?
@@ithinksamknows7549 not yet. I got trouble walking, spasms, muscle pulls and sometimes i get instant headache that just goes away after a minute or less. I also have like a vibration or something similar that comes and goes in my neck. So everything is pointing to MS. For a couple of years now I've had trouble holding things and sometimes my arms get weak. I get pins and needles in my feet or hands without even leaning on them. Sometimes i just hold my phone and it starts. So to me it really sounds like MS. They only did MRI on my brain without contrast and that one didn't show anything. I've insisted on a new MRI including my back and neck and with contrast on the brain. So far they won't let me have it. The problems walking, spasms, studders, weakness, muscle pulls etc all came pretty sudden and stayed for about 2 weeks. Now i feel fine except for that I'm tired even if i get 9h sleep. Sometimes i have issues sleeping so getting a good sleeping pattern is hard lol. I even fell in front of the Dr and needed help walking. Still they sent me home saying "we don't know what's wrong with you so it's for the best if you go home". So at home i used a crutch for almost a week because my balance was off on the left side. I live in Sweden and this is how the hospital treats people with possible neurological issues...
Im 43 and had ms flared up when I was 22
Sad story 🙏🙏
I have almost every symptoms of MS been unwell almost my whole life I'm 42 and I just want to know what's wrong with me I never felt normal it's so hard for Doctors to do any test to help diagnose.
the only test they had was lumbar puncture-unless something new has come up since 6yrs ago. I do not take any medications and healed myself with the foods I put in my mouth and exercise... take vitamin D also
An MRI of the brain and cervical spine is usually the first test to rule out or rule in MS. lesions will show up on the brain and or optic nerve and spinal cord. A Lumbar puncture is usually done also to look for oligoclonal bands in the cerebrospinal fluid.
I’ve been having issues for 2 years,-fatigue, clumsiness/dropping things, peripheral numbness, scratchy eyes, changing vision, now mild vertigo. Have fallen 3 times and sprained/broken both ankles. Am starting to worry it’s MS. I’m 67.
Go to the doctor and ask for an mri. It will save you time and money just getting it done and not fucking around with other docs or specialists or whatever. If it is not ms than you will have peace of mind and have a different starting point for a different diagnosis
@@thestraycat907 Nice language, maybe should be called, “ally cat.”
You Tube Alan MacDonald: MS is a parasitosis
Diagnosed around 2014. I have multiple sclerosis but it doesn't have me❤ keep fighting
what kind of meds are you on? is your podcast about ms?
@@xander2bass I'm currently taking kesimpta injections and to be honest I still feel pain but my body seems to be able to endure more. My podcast is based on my life story of letting fear steal my voice and the woman who took it back. But it talks about my trials of how I found out I was diagnosed and my journey to finding me. God bless you. I hope you watch them and stay strong-minded against the disease.
In less words it helps avoid relapses but I do take muscle relaxers also to alleviate the cramps.
The doctor that gave him muscle relaxers and xanax, that person definitely should not be a doctor. That is super sketchy.
I agree, that could have ended up causing a world of crap for the poor guy 🤦♀️
this is exactly what happened to me, im in the military btw!
Benzodiazopines of any kind are probably the most insidious types of drug a medical professional could prescribe. They should never be prescribed long term. I can tell you from experience. I wish I had never been prescribed them to begin with.
Yep you are not kidding I'll never forget when I was 17 years old and a "mood doctor" down here in Florida prescribed me good old Xanax! Now let's fast forward to being 48 years and it's literally ruined my life.
Uhh that’s doctors in general
Good vid ..i envy men though as doctors tell middle aged women its our menopause and not MS..its wrong..Best wishes in your journey ..
I get lots of hot and cold spill sensations on my legs. Eye issues/contacts issues, lots of carpal tunnel hand clumsiness. Fucking annoying. MRI revealed tiny white Spots but no diagnosis or help from doctors. Took a walk in the park felt like I was walking sideways and fell. Then it all resolved w some intermittent symptoms waxing and waning. Still hovering here fairly unwell. My experience w EACH doctor was an epic waste of time.
How r u doing now? Are the symptoms gone?
Going for mri next week, my left side of face and head is getting number and more painful, eyelid so sore to even touch and weakness down left arm index finger. Memory loss dizzy spells , I already have an auto immune disease . It’s been going on for a year now and I kept putting it down to other things like sinus infection etc but my gut is telling me otherwise. I’m so scared that I might have ms but if I do it’s probably best I know sooner than later
How did you get on? I hope you're ok
bye bye Thankyou , I didn’t have MS , have a protrusion in my spinal cord pressing on nerves causing my symptoms I feel very lucky , thanks for asking
@@catherine9808 😀...I am so happy for you...
@@tealeh2 thankyou so much , I already have Crohn's disease so wasn't looking for another one to add to the list 😅 feel very lucky and blessed
Man are you lucky! Waiting on the results of my MRI. I thinks it MS :(
God, I've been to doctor after doctor. I have so many diagnoses now, I can barely keep track of them all. I had paint in my joints, but I also had extreme pain in my legs and arms. I was diagnosed with RA and fibromyalgia. The RA was recinded. The pain in my arms and legs is over. Now I have chronic headaches and migraines, and a pseudo tumor in my left eye. Granted, that's from high CSF, but this issue has been going on for 5 years and my neurologist and none of the eye doctors ever noticed this pseudo tumor until the last year? My eye lids also forcefully shut, and I have ataxia in my legs and neurologist just said that's odd. Ok, so my eyes won't stay open, my face twitches and my legs drop out from underneath me, and all we got is that's odd? My mom has MS. I'm practically going bankrupt going to all of these doctors and no one is doing anything. I just want to cry most days.
Don’t give up Melissa, hopefully a specialist will find the cause soon. How upsetting though to be going through so much money to reach a proper diagnosis.
I feel you Melissa. I know it's so hard 😭 I wish I can hug you right now.
Where are you up to now with your health?
I've been diagnosed with MS and LEMS (Lambert-Eaton syndrome), they both have almost the same symptoms. I was supposed to start Ocrevus treatment for MS. But I just called (just before I posted this) and told them, "Let's hold off on that", until I can get a 2nd opinion. Half a dozen reasons: Having 2 diseases with the exact same symptoms? Possible, but not as likely: If I do have both, MS treatment alone is probably not going to do anything (Ocrevus does not treat LEMS); If I do take MS treatment and treatment for LEMS, could there be a reaction of the 2 drugs? I have heard a lot about MS being misdiagnosed (My neurologist is not a specialist in MS). Everyone I have watched on TH-cam says they were given a choice of treatment. Not me! We are putting you on Ocrevus. End of story. Throwing the dice for all the side effects I've heard about Ocrevus when I'M thinking it may not work anyway because of LEMS (if I even have that?). Yeah....NO!
My sister found out because her legs stopped working an she fell down the stairs. Lady at her work said sounds like MS go get tested. And yeah was MS.
Everyone always told me "diet and exercise" for so many years 😑
Hi glutenfreee gaming, I hope your doing well, Please turn to Jesus He loves you and He can heal you, He gave me a miracle and healed me when no doctors could really help me, If you call out to Him and ask Him into your heart to be your personal Lord and Saviour I know your life will change for the better, Romans 10:13 For whosoever shall call upon the name of the Lord shall be saved, life is so difficult when your living with an illness that can overtake your life I know, but there is Hope and His name is Jesus, God bless
@@jesussaves1827 lol
I hope a cure or at least better treatments can be found. Each time are more people with Multiple Sclerosis. :-(((
I also wonder why there's no cure yet. Death is peaceful than this disease
You still didn’t say out of all your test, which one it was that helped them diagnose you. I know you had Neurological problems, but was it the MRI on the brain??
All along the way these incompetent doctors are taking the patients money. They should have to pay the money back, and there should be a bank where people can look up their misdiagnosis! It's all about the money these days.
Contact doctor Akhigbe for your MS cure with his herbal medication
Message him on Whats App now
✝️ 2348140126449🇳🇬🇳🇬⏭️⏭️❤️❤️
So true. I have been diagnosed with multiple illness and been through a lot of medication but nothing works.
@@supplegrey3613 get a copy of your blood work and look up what nongmo/organic foods you need to consume to bring you counts to midline numbers. Read ALL the side effects of each prescription and understand they can react to other prescriptions differently. If your are on statins be sure to do an indepth search of pros and cons and why's of this drug. And understand a CHRONIC condition is money in the bank for the medical profession, CURES will not bring in that pot of gold. I am 73 years old, I have lost over 50 lbs., graduated college at 71, and became my own health champion, because I wanted to base my decisions on untainted information, and I have my own best interest at heart. I am on one medication. Premarin Creme, I managed to eliminate all other medications through meditation, keto diet (Sten Eckberg), Wim Hof breathing techniques. I found it to be easy.
I eliminated white sugar. I was depressed and suicidal my whole life and that ALL WENT AWAY with the white sugar!!!!! My mother suffered her whole life with depression and was a sugar addict (as am I), when I realized what was causing her sorrow my heart aches even more for her. Her whole life!!! The sugar has done this to thousands upon thousands of people suffering from morbid obesity, who are probably trying to eat away their depression with the same drug that is holding them down!!! Meanwhile this is a "LEGAL DRUG" making billions and billions of $$$$ while the uneducated suffer their mighty blows in their wallets for food making them sicker, and the medical bills, and prescriptions!!! The wheels on this bus go round and round, (the tires may be named doctor, pharmaceutical companies, fertilizer companies, unhealthy foods) they keep the public distracted while they suck their wallets dry.
Never stop seeking answers. Ask and it shall be given is true. The caveat is you have to want and deserve what your asking for, and know you already have it. YOU HAVE THE POWER! IT'S INSIDE!!! 💜
Been having ms symptoms for 20 plus years. Been to more Doctors appointments then I can recall . Have been told by a geneticist he thinks it’s MS but my neurologist has not diagnosed me with anything after seeing him for ten months .
Find a new Neurologist who specializes in MS. Your current neurologist is not diagnosing , he too is just treating symptoms. If he continues to see you he must see a neurological deficit, but he has not done the diagnostic tests. I am not being critical..I get it. I have walked your walk. Good Luck,to you ,wishing you answers, and a healthy future.
Since I posted 2 months. Ago my symptoms have almost all gone away.I have dealt with These flareups five or six times in my life and they usually come back every 3 to 5 years I’ll just keep pushing forward until the next flare up
My symptoms have subsided. I’m feeling really good.
Keldor Miro yes. Along with urinating problems dizziness eye pain shooting pain through out body muscle weakness muscle spasms trouble walking drop foot cognitive problems Numbness and tingling throughout hands and feet other symptoms .Like I said in my earlier post I’m feeling almost 100% back to normal just fear the day that the symptoms come back.Been told by two different specialist they believe it’s a ms and neurologist just isn’t onboard yet
No I’ve been holistic since 1990
Judging from this video and my own issues and experience. I suspect there are millions of people walking around undiagnosed.
my uncle had it and he died ms he was 22 years old