I have not been diagnosed with MS yet, but I have had symptoms since December, and I know I have lesions in my brain. The doctors are on a “wait and see” protocol, but I am going to a neurologist who specializes in MS in another month or so. In the mean time, I don’t know anyone with MS, so I can’t ask anyone what their experience is, except for places like this. I have been told I am just too stressed, that my lesions have nothing to do with my symptoms, that I read about MS and then that caused the symptoms, etc. (Symptoms started before I even had a clue about what MS was). I have had MRI on my brain and spine - lesions in the brain only. I had a spinal tap right at the beginning - no abnormal results and it ruled out several things. My blood work ruled out more. I had low-ish B12, but now it is really high and symptoms haven’t changed. Since December I have had numbness and tingling in my arms and legs. It started on one side, then moved to both after a couple of weeks. That sensation has progressed to burning, itching, skin crawling, buzzing, aching, tight muscles, spasms, soreness, knots in my legs, - all varying at different times and to different degrees, but it has never gone away. It is worse in my legs than my arms - sometimes my arms even feel “normal” but my legs have not gotten better. I don’t remember what normal feels like for my legs. I also have a weakness or fatigue in my legs that makes it hard to walk up the stairs without getting tired much faster than I used to. If I push too much, my legs feel like they will collapse, or they shake from fatigue. I thought MS was supposed to remit and relapse, but this has been ongoing. Is that actually more normal? The intensity varies, and some weeks are particularly rough, so maybe that is some kind of flare up (???). I have found that certain movements are hard for my leg muscles - like laying on my side and doing leg lifts. I used to be able to do those without much problem, but now I sometimes get to about 3-4 and then my leg will absolutely not move - like the muscle forgot how to work. This just doesn’t seem normal. I recently have been exercising (walking, some biking) every day, trying to keep my legs strong, so this isn’t just me being out of shape. I am also tired all the time, but assumed that was just part of being a parent who is worn out. I am just curious if anyone else can relate? It sounds like everyone is so different, but maybe some of you had these symptoms?
Your story sounds just like mine, but I don't have any lesions to show for it. My neurologist believes I have a conversion disorder, but my PCP believes it's MS. It really is crazy how similar our symptoms are. I'm still waiting for my MS diagnosis, too, because my gut keeps telling me that's what's causing all of this. I hope you get a final diagnosis soon!
Thank you for sharing. I hope you can get answers as well!
I have found that sometimes the nerves get into a habit, like msucle spasms that seem to last forever, then I begin to use muscle relaxation techniques and the nerves begin to change the message it sends to the muscles. And stress makes it worse. Some symptoms last for years even though we are diagnosed with rrms, this I rationalize as an especially violent attack that takes years to resolve itself, and my need to learn to calm my brain. They say in marriage to pick your battles, to let slide the unimportant though annoying stuff, in ms, I have learned to let everything slide, that worry is the misuse of imagination, keep remembering the glass is always half full, it is not empty.
There is a post, Take Charge of My MS that has exercises for relaxing the mind and the muscles, you may find useful.
Getting use to the new normal is unique to each of us, our personal journey but we all have some aspects of ms in common, reading some of the symptom posts will help getting comfortable with the new normal of ms or whatever is going on with you. best wishes,
Can you tell me how to find that post about relaxing the mind and muscles? I tried to look it up but couldn’t find it anywhere. Thank you for your insight. I haven’t thought of the nerves getting into a habit that way - everything I saw about RRMS made it sound like you have symptoms for a few weeks or months maybe, then they disappear for awhile, then come back. The more I read though, I see that it really varies, and that sometimes certain symptoms stay, but get better or worse in waves. (And I love the quote “worry is the misuse of imagination”!)
Take Charge of My MS is in the Treating ms category on the right of the discussion page, try the search box too, it should pop up.