This is what it’s like to live with multiple sclerosis | Your Morning
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- เผยแพร่เมื่อ 27 พ.ค. 2019
- Alex Oosterveen shares how his life has changed since his diagnosis.
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I am a 73 year old woman who was diagnosed with MS in 1996. I have been extremely lucky with this disease. My symptoms are relatively mild over the years. I have never taken any of the meds available
I simply reduced as much stress from my life as possible. I eat healthy and walk with a cane.
These days I am retired and so the ongoing fatigue problem does not affect my work life. Of course my children are grown and gone which is a plus and a minus. I am divorced and alone by choice.
So that’s my MS story. I don’t really think about it much anymore. I’m still here. So….yay!
I was in MS purgatory for 30 some years. Knew I had an autoimmune disease but was misdiagnosed and actively seeking answers....no answers with bad flares and seizures. It was completely missed and overlooked and quit talking about the stranger symptoms. Foot, spine, thoracic with constant flares and worse feeling like broken glass in spine. Every case seems to be a unique experience with some common overlap. Neuritis, trigeminal pain and fear....and living for the day as the past is past and the furture unknown. Now nearly 52 and just beginning treatment. Heard so many folks deny how bad it can be as they know someone who was diagnosed early and you seem to have to rise to their expectations. It was one of the most frightening realizations. Sleep, lack of and barometric pressure is enough to trigger attacks. It’s so hard to know yourself, even in your own skin. Anxiety can be crippling. I’m only just beginning and yet I’m deep down this road.
Yes its hard to diagnose
Took me many yrs until my son took me to a prof of neurology...he diagnosed me with ms immediately n put me on correct meds
Many people dont want u to complain if u have symptoms cos it can be normal leg spasms, fatigue, low energy, vertigo
Some even criticize u n THEY complain that u r talking lies,thinking that u just wanna ignore chores .....
Its a hard life....
I agree completely I have had symptoms for 16 years now and just newly diagnosed at 47. The anxiety is awful snd the way I was treated by doctors is deplorable!!!
Agree
Hello.I am living this right now! It’s driving me crazy. I know that I am having so many symptoms of Ms and they really , in my mind, can’t be explained in any other way. It’s been going on for about 13 years now. Each time I have a flare, the symptoms seem worse and more intense.
Can you tell me how or what happened that finally allowed you to be diagnosed??
I am thinking that I need, like someone mentioned In a comment under your post, where the son took her to a neurology professor. I am looking at going to a special MS clinic at University of Tennessee. To have a complete review of my condition and full array of test to finally assess for sure if I have it or I don’t. I will be surprised if I don’t, at this point, it’s so clear to me that it is MS. RMMS I think.
@@shireenramnarain4005I want to see someone like that myself. I am tired of messing around with doctors that don’t deal with MS that much and just don’t know what to do. I am looking at a clinic associated with University Of TN! I want to get on treatment asap because I know the sooner you do helps lessen the impact on my body. And now it’s been close to 13 years when I believe this all started. I’m so tired of it all!
Newly diagnosed. This was needed. Thank you!
MS purgatory is a great term - I appreciate your sharing 👍💪🕊I love your Mission Statement & I love the Blessings you speak of with the Silver linings of M.S. Mindfulness is a great way to live !
That stress induced exacerbation leading to optic neuritis is soooo similar to my story, as well. Good to hear this interview
6 months would be a dream for me... have been back and forth to hospitals and doctors for 5 years... with different health issues, but never really had vision issues like loss of vision, just vertigo a year ago, I managed to get MRI because my bloods were showing an issue with prolactin and then they discovered lesions... just about to have 1st appointment after that scan 8months after the MRI 😣
Going on two years for me in limbo. Awoke one day with a slight limp and weakness on left side, stuttering, vertigo and now at present my symptoms are worse and I have to use a cane to walk. Just had the worse flare of my life, couldn't work for two months and my right leg is now affected. My neurologist admitted my symptoms all point to MS, but my last MRI a year and a half ago came back clean. I do have a Macroadenoma as well. Being in limbo is so stressful.
@@tcarlson6324 I can’t believe it has been 4 months since my comment. Since then I have been to 2 hospital appointments and another MRI, this time including my spine. I had 2 video and 1 phone appointment as well. I finally seen pictures of my 1st MRI with 6 lesions in different parts of the brain and I have been diagnosed with MS after my 2nd MRI because it has shown multiple lesions in my spine. I am currently awaiting another phone appointment with my nurse about disease modifying therapy. As soon as I got diagnosed things moved really quick. Hope you find your answers soon.
@@manuelam2172 how do you feel?
This was a great interview 👏
I was sitting in a limbo for 1 year and 4 months. Initially I was diagnosed with Stroke. Come to find out it’s MS. Recently diagnosed. But I’m okay. Taking it one day at a time. MS don’t got me!!
Thank you Alex. My daughter was diagnosed last year. Loved your openness and sharing your life with us. What is the protocol you are on at the moment ?
I think that your business model and your plans are right on for the help some people need at times. I was in the health care industry about 8 years myself as a Nurse Aide, then Medication Aide and last a Medical Assistant before getting my CDL but I struggled for years and years of having symptoms of fatigue off and on but now in 2018 I was looking for something for my Ruptured disc in my back that wasn't a Spinal Fusion because I have heard lots of things about it so I found this surgery for different areas of the Spine depending on where the issue is and mine was in my lower back. Fast Forward, after having back Surgery I felt no better and was actually feeling worse so I finally broke down and went to the Emergency Room for the 4th time over the years and I was Blessed to see a wonderful lady doctor who did CAT Scan of the brain and finally I am finding the Diagnosis of MS. The doctor talked to the on call Neurologist here and they are approving me to be sent to another hospital so I can get tested by the Neurologist. I am no longer going to be having to cry and wonder what is wrong with you and have people look at me like I'm just crazy so I'm thankful for everything even though it's not best but at least it's manageable and I have hope now.
The thing with ms no two people have the same symptoms I never thought I had it because I didn’t have optic neuritis but I do have peripheral vision loss my ms nurse said everyone has different symptoms and it affects people completely differently
My cousin in Ireland, has MS! She gets Free health care, and unemployment benefits! Along with Disability payments!
have u tried stem cell trsnsplant? its had good results in turning back illnesses.
Still no definitive diagnosis I do have MS. Started this in July 22. Now 23 seen another neurologist had more blood work now more MRI's
I wish it was 6 months. I've been going through it since 2009. Even though I have doctor's that say it's MS they still haven't given me the official diagnosis.
What are the intial symptoms?
I have same to say
His laugh at 15:28! ❤️
I've had very, very low energy since my teens. I just couldn't and still can't get enough sleep. Dog tired all the time and feeling like a train had run over me after waking up. I would almost be comatose at times. Never had enough energy. Got on anti-depressants for 20 years. They helped some but not enough. I have had eye problems for about 5 years. I now have numbness and tingling in both feet almost over night. I have what feels like a dark cloud looming over my head, I'm having problems thinking clearly. I have some light depression. I see the Parkinsons doctor tomorrow to talk with him for first time. I just recently came across info that I may have MS instead of Parkinsons which a chiropractor diagnosed, not a neurologist. I'm not happy. What is this demon MS?
My daughter aged 12 in 2016 had similar symptoms like u
They said cancer but in 2017 symptoms were accumulating n did mri n blood tests...she was diagnosed with lupus
I was diagnosed with ms after many yrs although i had vertigo, leg drop,numbness
My son aged 20 in 2018 had double vision, fatigue ,headaches was diagnosed with mystenia Gravis
Sooo i think u must go to the proper doctor n get tests done to get the correct diagnosis .....
Has anyone had success with low dose naltrexone? It's an off-label treatment. Just curious if anyone had experience. Good or bad
Coimbra protocol all the way :)
ocrevus
MS purgatory? I watch these videos and taking care of mom living with MS for almost 50 years. We live in MS purgatory.
ben mulroney interviewing? wtf
This reporter has not a clue.
In what way?
He seems to be doing reporters things... Like simply asking questions... Is that not what reporters do?
Shameful...