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I have always been stiff. My coach at u of Michigan tried to get me to touch my toes. I cannot touch my thumb to my wrist. No collegen stretch marks. MRI diagnosed MS in the brainstem but not in the T11 lesion. but I don't want to go on DMTS, but start next week. Looking for any way out of MS as my neurologist practically ignores me and won't let me talk to a 2nd neurologist.

One of the big problems with MS and some other neurological disorders, is the diagnostic tools that doctors use to measure health, can be absolutely maddening. You are left many times as the healthiest truly sick person you know.🤔

I'm 57 and that's the way my MS progressed. I worked out a lot about 7 or 8 years ago. I was an obsessed hiker (at least 50 miles a week) and worked out in the gym 3 days a week. I first notice balance problems then. I sort of blew it off as just old age. Thought I just need to do more balance training in the gym. Then about 5 years ago, as things got worse, I thought, "O.K. this is something more serious".

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Very helpful video. Thank you 🙂

Try spinal tap! I have brain lesions and fall 4 times this year! Go to Dr,,,

God bless you.

The definitive test for MS is to have an MRI to check for brain and spinal cord lesions. My daughter has EDS but of course they tested for MS first. EDS was tested after everything else was negative.

Please share a follow up video. I'm going through this journey just now and your videos are very affirming!❤

2012 started my journey. I also thought I had MS. I think my mom gave it to me. And I think I gave it to 2 of 3 of my boys. My youngest has the hyper mobility. I always had the tight muscles like you. I think I’m starting to have colon issues.

AT LEAST U SNOW BOARD AND RUN

Alopathy is western medicine that is, "Treat the symptoms", is at a all new high, when they throw you-A Nurse_ under the bus..... This is worse when your on Medi-cal..."its always in your head to doctors and the ones they represent."..The Insurance Company .....SEE---YOU are their LIABILITY...and they dont care about you....

Great video!!

what's the conclusion? Was EDS confirmed to be the cause of your symptoms? I really wanna know how are you nowadays

Where can I find the classification information. My daughter’s (just turned 16) dr wants her to do the genetic testing for EDS. We have an appointment with him to go in and discuss everything

Thank you so much for this info! I could have passed the Beighton Test w/flying colors up until about age 50-55. Now I'm so stiff all over I cannot do all the things I could when younger...bending fingers backwards, ect. My new Rheummy doc did the test on me last year, and I couldn't bend my fingers backwards, I could almost touch the floor, abt 1inch away (I've also got RA and DDD and severe SI joint arthritis, ect.) She said ........ "I don't think you have EDS, I'm going to diagnose you with Fibro" [Thanks lady, I was already given that dx 25 yrs ago!] The only geneticist near me accepts children only...tough luck if you are a 67 yr old gal like me. ps.... my pain doctor last week was showing me how to do a stretch, and when he saw how much I could pull my leg up into my chest, he commented how extremely limber I am. I was surprised because I've stiffened up so much from what I was like for 50 odd years, I said, so it IS possible I might have EDS after all? He immd. stopped me from the exercise and said "ok..STOP, let's not do that or you could pull your joint out." He also said I was MUCH more limber than him....he's abt 20 yrs younger and a health afficiando.

Non-Restorative Sleep is the term i thnk i've seen in publications and literature for MS and what not.

Sherina - how have your symptoms occurred, it's been 5 or so years. I've seen a couple of your videos, we hope you've been good.

3:33 ! :/

Hi Sherina, thank you so much for sharing! I've been going through this for nearly 7 years now. I'm a swimmer and i think that has masked a lot of the symptoms for a while. Still swim every day, just having some real problems walking. Starting to use a cane for longer walks recently and that has helped some. So sorry for what you are going through. Please keep up the great work! Peace to you ~ Jeff

Please contact me. My only child died SUDS. Multiple SUDS AND SUDEP, familial. Trying to get dx myself for Dysautonomia s/s. Neice with EDS.

Thank you for sharing your journey with all of us, for 6 years I went to drs because of bouts of sudden weakness, odd vision issues, blacking out when mountain climbing and odd pain, finally gave up when the dr gave me a referral to a psychiatrist, stating there was nothing physically wrong. The next black out occurred when I was hiking in Arizona, this time I didn't just get back up, I had been having strokes due to unmanaged PPMS. I pray that whatever the diagnosis turns out to be, that you stay on top of it and continue to thrive.

Come on....need to see updated videos on how you are doing. It's been way too long.... "Thumb's Up"

No updates?! 😢😢😢

TH-cam Alan MacDonald: MS is a parasitosis

Sis how are you doing now? I haven't had an attack in over decade. I take no medication. Holler at me

No update? :(

I have Hypermobile EDS and for years i thought and the drs thought i had MS. The damage to my spine is shocking and i have severe nerve damage and daily numbness in most parts of my body. I am very Hypermobile still at 40 years old but now i have osteoarthritis in all my big joints. It also affects my jaw,teeth,hair and stomach. I have found the symptoms of EDS and MS can be very similar in some areas.

Thank you for posting. 🤗 All the best for your journey.

Thanks for posting! I, too, feel like one side of my body is normal and the other isn’t. I got a bit too hot on vacation and my legs stopped working! Scary as heck. Managed to sit down on the tile floor of the bathroom and cooled off! I was able to get up and get going about 10 minutes later. I have the tremors and the fatigue, too. Haven’t been diagnosed yet but am heading to Cedars Sinai soon.

Thank you, Sherina! Your symptoms, the way you describe your every day life is just like I feel. I have all the Symptoms you mentioned, but no lesions to see... I Hope for the lumbar puncture to bring a diagnosis. Many greetings and all the best for you from Germany :-)

I was diagnosed with PPMS in 2009 I am mostly in my hospital bed at home now but.. I am still hopeful at 64 years of age ❤️ Good Luck to u

I need my spastic muscle support. Ha. I have a foam roller but I only use it for spinal alignment and chest opening. The Muldowney protocol is great. I have the book. Thanks for the reminder about the videos. I have MS as well as hEDS. The MS meds were awful.

I am fortunate enough to have developed MS later in life. I am a disabled vet with my P&T rating. My kids are all raised and moved away. I can tell you a few things that will help drastically!!! Nicotine is the most powerful nerve pain killer known to man!!!! I smoke a pipe full of cherry tobacco twice just about every day for the pain! I instantly feel human again!!! Stay away from cigarettes!!! Pipe tobacco is full of nicotine, and you only pull it into your mouth without inhaling! Hold it in your mouth for about ten seconds, and the nicotine will be absorbed by the saliva. When your tongue starts to feel funny, you will know that it's working!!!! Also Gabapentin, and caffeine go into the mix. It is almost as good as Fentanyl when you use this cocktail!!!!!! You can do things that will help the pain of MS just like I do!!! Remember-----Nicotine, Gabapentin, caffeine, and Ibuprofen all together, and I promise you can feel human again!!!!!!!!!!!!!!!

any updates?

Thank you for the video; these kind of videos by those that suffer should be required viewing for Doctors. I've been going through a decade of Doctors ignoring the symptoms I've been trying to discuss with them, all while my condition has become progressively worse. I pressed the issue last Doctors visit and now I'm on a quarter of a year or longer wait list to see a neurologist. Now I scour videos by MS sufferers to garner information on dealing with this condition as the medical community certainly hasn't been able to or willing to help.

Thanks for your informative videos!

Hello. Have you ever tried Cusack Protocol?

🧡

Sorry you are going through this. I have AS and the process of trying to get anyone to listen to me was so exhausting. I became anxious about going to the doctor. I still am. I honestly thought they were meant to rule out serious causes first but I found I had to run around to different doctors for years before they realised something was wrong and this was with severe debilitating symptoms. 🤦‍♀️ I find a lot of health care professionals have no real interest in the job or the patients. During a severe acute attack that almost killed me I was told to be patient because there is nothing they can do right now to help me and the covid pandemic has to come first. I sat there in level 9 pain, weak, exhausted, holding my cane, crying and said to the doctor "this is degrading and negligence". I collapsed when I got home. That night the attack got so severe I blacked out. The next day I started having panic attacks. After that it attacked my liver kidneys bowel eye etc and then triggered ptsd and psychosis. They could have stopped this attack with steroids. I've lost trust in healthcare. Sorry to ramble on lol. I just hope they realise that patients need to be taken more seriously

How are you doing?

Thanks for your post. True about when we go from caregiver to needing care. Terry Wahls Protocol and her videos are informative. Black Seed Oil is said to be very useful. Wim Hof videos are also good to watch. I celebrate your courage. Hope you heal well. Good health to all viewers.🥗💪

I never notice that fat herniations in my palms until you mentioned it.

Hi Sherina I'm Jordan. EDS indicates sacral tarlov cyst disease. See you have tinnitus. Everyone has healing hands. Try holding you fists knuckle sides against your ears. Hold em release adjust a few times. Worried about hearing loss. Superficial siderosis might also have caused the lesions. Tarlov hits above its weight your symptoms are within its wheelhouse. Treatment available for tarlov. Admire your candor bravery and research. I apologize for any unnecessary reasons for worry. Peace be unto you.

YOUR AT THE BEGINING,,DISABILITY COMES WITH AGE,,

U r so impressive

U and I r so much the same. Mine was vertigo and I knew something was wrong. I too was never sick and never went to the doctor. I was a college athlete and have always workout. Now I do band workouts and walk, but what a difference from my early life.

Stay strong

Did you ever get an evoked potentials test? Mine was abnormal

Did you get diagnosed with ppms after? I am going through the same thing