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Road to diagnosis, understanding medical notes?

Good evening. I have been struggling with physical decline for about three and half years. Prior to I rarely had to go to medical appointments, aside from regular annual exams, etc. All medical professionals have suspected MS during this time, however imaging and testing has not supported that as of yet. One MRI did show scattered hypertensies, supportive of migraines which I do not suffer from and have stayed time and time again. I decided to take the past year off from medical appointments to give myself time to breathe and to mentally regroup after years of frustration and… To put it bluntly, feeling like a crazy person. To feel and know what is happening to your body and mind, and have no medical clarity behind it, has been very disheartening. Late December I started losing feeling in my toes…fast forward to now, both legs to the knees are permanently numb. I have been having serious bouts of dizziness, almost as if the floor is going to fall out from beneath me. The muscle cramping, spasms, sharp/pinching pains (especially in my legs) has become overwhelming and debilitating. The heat intolerance is to a point it makes it difficult to even enjoy my daily shower, and now these intermittent flashes of shock through my body. It is as if for brief moments I am being electrocuted in various places of my body. I suffer from extreme left jaw pain, as well as overall body pain. I’ve began falling as my legs just give out from underneath me, my hands sometimes become locked in place if I use them too much, such as cutting of fruits/veggies, cleaning, etc. The fatigue… where do I even begin. I find myself struggling to keep my eyes open only hours after waking up… it is a level of exhaustion I didn’t even know could exist. Then the guilt sets in… why am I so lazy? Why can’t I just do the normal everyday things I used to do? Why don’t I want to go anywhere, ever? And then begins the anxiety and depression. Such a vicious cycle.

I returned to neurology today, and after the physical exam my physician was straight to the point, stating my symptoms are highly suggestive of MS. A whole new battery of imaging and tests are in the works once again. During my exam today it was noted “significant gyrations no fall”. What does that mean? Also, strength tests were normal with exception of “giveaway weakness” in multiple muscle groups of both upper and lower extremities. Does anyone have any experience with these findings? Has anyone had similar findings, ultimately resulting in a diagnosis? Any advice and/or words of encouragement are very, very much appreciated. Thank you 💛

  1. Hi . My heart goes out to you. You must be overwhelmed and frustrated, I am glad you returned to the neurologist for testing. Sometimes, people have MS symptoms before lesions are obvious on MRIs. That might be the situation in your case. There are also several other health conditions that mimic MS and should be ruled out as well. Here is an article that lists them: https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions. It sounds like your doctor is pretty determined to figure out what is happening. Testing is the hardest part because you can do nothing but wait for results. Right now, it's important to keep your mind busy so you don't get too stressed while you wait. Immerse yourself in anything you can to keep your mind off things, but take a little time to educate yourself about MS and about the other potential diseases as well. That way, you will be better able to advocate for yourself when the test results come in. Please know we are here for you whenever you need support or a place to vent. Keep us posted if you feel comfortable doing so. Thinking of you and wishing you the very best. - Lori (Team Member)

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