Not dx'd yet, and not comfortable with my neuro

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Not dx'd yet, and not comfortable with my neuro

Postby jillp » Wed May 22, 2013 12:22 pm

Hi (I will appologize now as I see that I've written a small novel here :lol: )
I am new here, and really just want to get some opinions on what I'm experiencing.
My history: 3 years ago I started with a small numb spot on right calf and over the period of a month and a half it spread all the way up my right side and down my right arm (although it stayed kinda "patchy"). My right hand was numb, but also extremely sensitive to touch, all at the same time, and became very stiff. MRI showed 3 lesions - 2 in my brain and 1 on my spine. That "general neuro" said "You've had a clinically isolated syndrome, which may likely progress to MS", and referred me to the MS Clinic.
So over the last 3 years I've had "pseudo-exacerbations" due to over-heating and such....all have come and gone quickly.
But....back in January I started feeling constipated, even though I wasn't. It came and went until February, where it wasn't so much a feeling of constipation, but a feeling of just "having to go" ALL THE TIME. I was in the washroom like every hour feeling like I needed to but really didn't. After about a month it went away. Then a couple months ago I started getting a feeling in my right calf again, but this time it was like a "ghost touch"...like a cloth was lying over my leg when it wasn't. That feeling over the period of a month went into a spot on my left calf then on my right arm.
So beginning of May I went to my neuro, who said "Meh, I don't think it's anything." He said it didn't sound "painful enough" to be a new attack, and my Feb bowel issue sounded like just good old constipation. That since there was no numbness or pins and needles, and the feelings didn't just appear one day but came on gradually, that it was likely pseudo-exacerbations. I told him I didn't understand as 1) These feelings were constant for at least the last month; 2) Who said that all MS symptoms had to be painful and disabling??? and 3) Since when does it have to come on like a 2X4 to the head? My original symptoms came on slight and progressed over a period of a month, and everything I've ever read said it could happen either way.
He has agreed that it's enough of a question to warrant another MRI. If it shows nothig new, the MRI clinic will discharge me as a patient, as I will have been 3 years with no new lesions. And if it does show new ones, then MS it is.
So I wonder what your opinions are on my "new symptoms"?
jillp
jillp
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Re: Not dx'd yet, and not comfortable with my neuro

Postby Twistedangel » Wed May 22, 2013 3:10 pm

Hi! I am new to this forum as well, and to MS. I got my dx in March, and like you, my neuro said for now we'll call it clinically isolated syndrome .... but I am not sure I understand the term! LOL .... In any case, I have to go back next November/December to have the MRI's repeated. ... While I haven't experienced the symptoms you've had, from everything I have read, it sure sounds like MS related to me. But I will offer this; if you're not comfortable with your neuro, find another one! You have every right to switch doctors and look for another opinion. Maybe you will be told the same thing, but MAYBE you'll be pointed in another direction! Good luck!
Twistedangel
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Joined: Sat May 18, 2013 5:16 am


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