For the past two years I've had MS like sx (persistent tingling of all hands and feet, frequent urination, dysphagia, weakness in hands/feet, muscle twitches) - that came on suddenly --- all blood work has returned normal, 2 EMG's are normal, and had MRI's done of head and spine for the past two years w/ w/out contrast showing no lesions -- thus neurologist said I did not have MS (for now).
However I switched to a new internal medicine doctor today who went over my symptoms and told me she thinks I do have MS based on what she's seen and the sx I've described. When I asked about the McDonalds criteria and the negative EMG/MRI - she mentioned it could be early on in its stage and said its "kind of like someone with high cholesterol, obese, chest pains, high triglycerides, etc..and says the test shows no clogged arteries... but do they really have heart disease? In my opinion yes.-- And in my opinion you do have MS.. but its just not showing right now."
I know about the McDonalds Criteria and the necessity of MRI's but since no other treatments/ explanations have been offered.. and my symptoms seem to be be getting worse.. I was hoping to get some guidance on what to do:
1) Do I keep insisting on getting annual MRI's - the doctors seem to suggest this is not a good idea and mentioned that MRI's are not totally benign?
2) What other tests should I insist on to check.. lumbar puncture, nerve conduction studies..etc? I know others on here have been in limbo for years-- were there tests that doctors usually overlooked that eventually yielded results.
3) Is there anything to be done to slow down the progression (disease modifying drugs) if this is just a "pre" full blown MS condition.
4) Does the sudden onset of symptoms followed by slow progression seem to fit the PPMS pattern (it seems like it does to me)? Does bilateral presentation favor a PPMS or RR form better?
5) Is there a way for a definitive diagnosis without MRI? (Lumbar puncture, etc)..
I'm super scared/depressed right now...I have a young child to care for and I don't know what I'm going to do if I am disabled in the future (i know that is jumping the gun a bit--but I can't help but think that far ahead.) I've been in limbo/ on and off these boards/ for the past 2 years .. and still have no answers, but I feel I'm getting worse.
However I switched to a new internal medicine doctor today who went over my symptoms and told me she thinks I do have MS based on what she's seen and the sx I've described. When I asked about the McDonalds criteria and the negative EMG/MRI - she mentioned it could be early on in its stage and said its "kind of like someone with high cholesterol, obese, chest pains, high triglycerides, etc..and says the test shows no clogged arteries... but do they really have heart disease? In my opinion yes.-- And in my opinion you do have MS.. but its just not showing right now."
I know about the McDonalds Criteria and the necessity of MRI's but since no other treatments/ explanations have been offered.. and my symptoms seem to be be getting worse.. I was hoping to get some guidance on what to do:
1) Do I keep insisting on getting annual MRI's - the doctors seem to suggest this is not a good idea and mentioned that MRI's are not totally benign?
2) What other tests should I insist on to check.. lumbar puncture, nerve conduction studies..etc? I know others on here have been in limbo for years-- were there tests that doctors usually overlooked that eventually yielded results.
3) Is there anything to be done to slow down the progression (disease modifying drugs) if this is just a "pre" full blown MS condition.
4) Does the sudden onset of symptoms followed by slow progression seem to fit the PPMS pattern (it seems like it does to me)? Does bilateral presentation favor a PPMS or RR form better?
5) Is there a way for a definitive diagnosis without MRI? (Lumbar puncture, etc)..
I'm super scared/depressed right now...I have a young child to care for and I don't know what I'm going to do if I am disabled in the future (i know that is jumping the gun a bit--but I can't help but think that far ahead.) I've been in limbo/ on and off these boards/ for the past 2 years .. and still have no answers, but I feel I'm getting worse.
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