the long wait

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

the long wait

Postby theroadlesstraveled » Mon Sep 11, 2017 9:22 am

Hi everyone. Like most of you here I have a long and unexplained history of neurological symptoms. More than 3 years ago I suffered my worst exacerbation of cerebellar ataxia, dysarthria, tremors, vision disturbance and cognitive dysfunction. It took months to recover. My GP was certain it was MS until a brain MRI showed only one lesion. I've been followed by multiple neurologists (one in my rural area and one at a large teaching hospital) and have had every test known to MS. LP's, MRI's, Evoked Potentials, EMG's, NCV's and extensive blood work. None of these has been able to confirm a disease process.

Lots of ideas for possible causes have been thrown around, the most recent was Stiff Person Syndrome, something my Boston neuro was almost sure would be a fit. Recently I was asked to meet with a geneticist to look for a possible hereditary disorder. I'll play along but really think in my heart of hearts that it is MS. There just isn't anything else that fits the picture.

I'd had symptoms for many years on and off .. voice hoarseness lasting weeks, bouts of severe fatigue, rigidity, muscle spasms, imbalance, difficulty walking. Life was busy though and I was young and healthy (I thought) so other than the occasional visit to my PCP I'd shrugged them off. In the years since my Big Bang I've experienced more flares and a slow but steady progression. The ataxia and rigidity as well as a crazy strong startle response really limit what I'm able to do and I've (mostly) come to terms it .. knowing that someday whatever 'this' is will make itself clear.

It can be crazy making not having answers though. For the first two years I was a banshee ... determined to find out exactly what this was so I could access treatment and make it go away. Clearly that didn't work. So for now I need to be satisfied with the meds that address symptoms, weekly physical therapy and balance/coordination exercises to stay as mobile as I can for as long as I can.

I just wanted to put my story out there in the hopes that someone reads it and is able to say "Me too". It's hard not having an explanation but it's even harder to not have a community .. people that have been there and understand.
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Re: the long wait

Postby jimmylegs » Mon Sep 11, 2017 10:37 am

hey there, welcome to the forum. although many can and some may chime in, i'm not in the quest for answers camp myself. more like chronic denial?? or not caring if i do have the dx. or something in between.

re extensive bloodwork, are you able to share any results in case our collective patient xp can shed light beyond the normal/not normal lens used by docs in the mainstream? since it's old/standard, can we assume they've ruled out vit b12 issues (by their reckoning at least) as part of their differential process? if so do you have that result on file (including units)?
docs have relatively recently begun looking at serum vit d3 as well. do you have that result handy (again w units pls)?
as for other things that are likely kicking around in standard bloodwork, do you have records for serum calcium or potassium? serum ferritin? hemoglobin?
in the academic literature but not often evaluated in practice, there are other tests worth having a look at when seeking to rule out ms. do you have a serum uric acid test on file? serum magnesium, copper or zinc? serum vitamin e? PUFAs?
lastly have any docs ever referred you to a dietitian?

whew ton of questions - that's all for now :)
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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