Even Opinions are welcome....desperate
 

I am bouncing from the Neuropathy site and the MS site.

Still no dx.

How long would one expect to have only sensory symptoms, not vision, but sensory meaning abnormal sensations, before the onset of motor symptoms?

I know everyone is different, but even an opinion or guess would help.

My brain MRI was done without contrast (have read it should be done with contrast to detect MS), my spinal tap was negative, Babinski test, normal.

I am 52 yrs old, so this would be the Late onset variety.

I asked my neuro for an EEG (I think it is called Visual Provolked) he said no

not necessary.

All test for neuropathy ok.

I am on 1200 mg. of Gabapentin to control abnormal sensations.

Please any words would be appreciated, been in limbo for one and a half years!

I am sorry that you are worried. And I know it must be so frustrating to be seeking an answer to your symptoms. You are correct in that everyone is different. And unfortunately it just can't be predicted how long each symptom will last.

You are around my age. I was diagnosed around two years ago. It wasn't late onset though, but just diagnosed late.

Hang in there...not very good advice I know :o...but at least know you are not alone. Come on here and talk anytime you need someone to listen! :hug:

Friend2u Too!
 

Thank you for your kind words............

it is true. it can take a while to dx (diagnose) MS.
sometimes sx's (symptoms) have to progress for tests to come up +.
MS sx's can mimic other illnesses. i'm sure your dr has been ruling them out, such as lyme disease.

it's so frustrating to know something isn't quite right but your dr can't find out what it is.

keep a sx journal with dates that certain sx's come up. that may help your dr over time.

we're always here for support and :hug:

I've had sensory symptoms going on eleven years now. I haven't had any motor symptoms although I've had heat intolerance and relatively minor fatigue issues for most of my life. Diagnosed 4.5 years ago after second distinct attack. I'm 53. The only tests I had were MRI's, 6 years apart - first found a lesion in brain, second set found lesion in spine. No meds, just learned to tune out the tinglies over time.

C

I had sensory problems for about 20 years before I started to have some issues with balance and vision. it was frustrating because every MD i mentioned it to thought me to be whiney and looking for drugs or a way to quit work. I LOVED my job and was quite upset when I was forced to stop working. I simply knew something was wrong and wanted to know why.

Sometimes in this life, we get to know why. A car runs over our foot and its painful. we get to know why. A loved one developes a disease and fights for their life. we dont always get to know why. Some folks die from cancer and some folks live. We dont always get to know why.

Its very hard to sit "in the meantime" That period of time that is neither here, nor there. its in the meantime that we learn our greatest lessons. Lessons of patience, lessons of research, lessons of tolerance, lessons of strength to stand up and refusing to be dismissed anymore. Lessons of lonelyness and not fitting into the left or the right. its a time filled with strife, and grief, and frustration. I hated the meantime. I wanted answers! and I wanted them instantly. Why me?! Why now?! I struggled hard against the meantime. now that I look back, it was rich with lessons.

I hope you are able to get some answers soon. its frustrating to not know for sure. :hug:

I hear you, Invisable...I can't see you..:D, but I can hear you.

Sooooooo frustrating, not to have a DX..:mad:

:hug::hug:

Diagnosed in 2008, neuro figures I'd had MS at least 5 years at diagnosis. So now we're going into 2011, and I've yet to experience motor symptoms.

Not everyone with MS, or neurological symptoms, will experience motor symptoms. Mine, other than my blurry or doubled vision, are all sensory.

The way I'm going with my disease course thus far, I can't see me experiencing motor symptoms. It COULD happen, but there's a strong chance it won't. So I don't worry about the 'what ifs'. :)

I do hope you can find your answers and get on the right course of treatment to help ease the symptoms you are feeling. :hug:

I never thought of it that way, difference between sensory and motor. I was dx'd past 50 when the eyes got bad, had MRI and visual tests. However, neurological symptoms of some sort back to childhood. Weak hands in childhood. Then one eye got bad at 11 and weak hands got temporarily worse, recovered. Big attack at 17, dizzy, constipated, had to get out of college for a while. Weak, dizzy from time to time, was told by a doctor I had an MS walk, but not dx'd.

I had a complication, too, because I had another disease, porphyria, which has some neurological symptoms. That too was dx'd late, after MS. So were some of my symptoms really Porphyria? Probably, but I did have brain lesions, abnormal VER and Visual Fields leading to MS dx.

I am still walking in old age, and have actually improved hand eye coordination. I think this is due to the Swank diet 80% and various other health measures. My diseases forced me to eat well and wisely and to refrain from just about every vice. So I would say my motor condition improved after dx of MS and going on the Swank diet. I can get pretty unsteady if I eat saturated fat, so I know enough not to do it now. I had a setback breaking my knee when I fell downstairs last spring, due to numb feet, which are caused primarily by my third disease, Polycythemia Vera. I had some numbness before PV, but not to the extent I did after I got PV,
which I've had for about five or six years, it becoming more severe lately. But still walking.

So I never even thought about the difference between sensory and motor, as I was a dizzy dame from early adulthood onward, with spells of weakness that prevented steady working. Got through many years of teaching, however, before disability at 56.

When I went on the Swank diet, I think my hand and eye coordination improved and my dizziness just about left. In other words, I improved in the MS department, although neuro
symptoms of Porphyria (peripheral neuropathy) became apparent. So it's been an up and down ride!

FYI--What happened to me...