Last reply 6 days ago
Everything is on my mind

So hey I was dx’d At age 29 with ms. Went until 50 with no major issues. No mri’s either or anything. At 50ish had a flare. Now residual dizziness and severe fatigue. Had my 2nd annual mri, shows one new lesion on brain and questionable 2nd one on csp. Dr wants me to start copaxone now. I go to Johns Hopkins University hospital, I like my dr a lot he is not big on medicine and neither am I! But he feels this calls for something plus repeat mri in 6months. I feel good most days but I tire easily. Also occasionally have these wierd bouts of trembling, dizziness, uncontrollable shakes and weakness, I can’t explain, maybe it’s a panic attack. Also I take no supplements so now on vit D. I am trying to not let this get me down, I was hoping to not go on meds. Anyway this is my plan. Additional suggestions/feedback? Thanks!

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vixen
6 days ago

Hello @angieh, nice to meet you. I was diagnosed last year, completely out of the blue at the age of 50. Your post made me think about myself and my experience. When I was dx, it appeared to co e from nowhere, with no previous. My neuro found a lesion on my mri which she said was ‘old ‘, implying that I have had the condition for some time. A few months ago, I realised that when I was 30, I experienced L’ermittes syndromewhich at the time, was just dis issued as nothing and went away after a month. But, had I been diagnosed there and then, I wonder how my life would have been over the last twenty years? Having a diagnosis would have probably felt like a shadow, and I’m sure I would have attributed every ache and pain to it. So my story is similar to yours; same timings, but your with yours diagnosed, and mine without.

I’m not a doctor of course, but it does sound as though it’s a relapse. Why it’s happened now, and me with mine last year, who knows. Maybe it was triggered by a life stage thing, maybe hormonal changes. In my case, being dx has led to a major life overhaul over the last 18 months. It’s actually quite exciting. I stated a DMD last year which is going well. It looks as though your MS has not been aggressive which is a blessing. It’s great that you found 5is site, it’s been no end of help and support to me. Take care, let us know how you go x


stumbler
6 days ago

@angieh , the only predictable thing about MS is its unpredictability.

These new lesions are indicative of MS activity, so could explain the fatigue you’re feeling.

Yes, some of these other sensations could be a panic attack as you are now realising that you’re not immortal and that MS is a sleeping MonSter.

You need some rest and relaxation to allow your body to regain control. This storm will pass and the sunshine will return. 😉


embroideress
6 days ago

@angieh Hi! I’m from Maryland too, (near Annapolis) and I live in France now. I was diagnosed this year at age 57; I had optic neuritis with blurry double vision when I was 16-17 yrs old. So yes, it can hang around quietly and come back much later. I agree with @stumbler and that’s the first thing that came to my mind while I was in the hospital, I’m not immortal. And then, like @vixen major life overhaul, definitely positive!

You must be getting excellent care at Johns Hopkins. I had no desire to take meds either, but once I began a DMT (Plegridy) I had the feeling of doing something positive for the future. You’ll feel better as you take charge of your health and make a few changes to your life, and talking with folks on here really helps too! 😉


angieh
6 days ago

Thanks for your replies, it helps me feel less alone and afraid. I was curious about some of the life overhaul strategies mentioned by vixen. I am looking at cleaning up my diet, more movement, supplements, dmd etc….also if I’m having ms activity, a little extra self care, I guess, I can’t stop life all together (but I am exhausted)!

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