MS and journey update.

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MS and journey update.

Postby Tb12 on November 13th, 2017, 4:34 pm

Hi guys,

8 years of symptoms, had so much tests and seen so many neurologists and neuromuscular specialists and still no answers..
I was told by current neuro he thought i had ms, today the tests came back negative..
Im so worn out, i have to come to terms that i will probably never get a diagnosis or know my future..

Symptoms
Fasciculations
Cramps
Weakness
Tremors under muscle stress
Nerve pain
Fatigue
Joint pain
Muscle tightness, maybe some spasticity (never pointed out clinically, but my calves are rock hard swollen)
Bladder issues
Urological and sexual issues (loss of sensation) etc
Hand issues, thumb wasn't listening on and off, hands feel like it takes extra brain power and concentration to make them do what i want them to do (on and off)
atrophy (noted by me not a neurologist, i have seen changes in my body, but no clinical atrophy noted, or ever really heavily investigated)

Today my clinical strength test was 5 out of 5, reflexes were a little reduced but nothing to worry about..
Basically was a clean clinical exam..

Had 5 emgs over the years, mri's, blood tests, lumbar puncture and so much more...
One emg was suggestive of mild chronic denervation but the rest were clean including the last emg

Mri found lesions on brain but no ms related..

I have always worried about mnd but the neuro today said no mnd and no ms..he is specialist in both.
I dont know what to do, guess i worry still with no diagnosis.

still worry it could be a MND of some sort, is that stupid in thinking that after 6=8 years of symptoms?
Tb12
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Re: MS and journey update.

Postby garym on November 14th, 2017, 10:33 pm

Tb12 wrote:
still worry it could be a MND of some sort, is that stupid in thinking that after 6=8 years of symptoms?


after 6-8 years of sxs, you really should move past the worry of mnd. it sounds like you just had a very good visit to a neuromuscular specialist where he ruled out the bad stuff. take comfort in that, get back to living and stop worrying about a condition you don't have. you can't get time back that you waste worrying so deal with your sxs and get back to living.

Take care,
Gary
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