Going through with testing?

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Going through with testing?

Postby Dlojo » Tue Jan 31, 2012 12:23 pm

I'll try to keep this short.... for the last 4 years I've had bad trouble with joint paint, fatigue, body pain, weakness. I often feel like I'm 80 years old. I'm 28. I've been tested for Lupus a few times, RA a few times (with one coming back positive during a flare) Lymes, etc... I had an episode 2 years after the pain started where my muscles in my legs got very weak, and when I tried to run they'd have this weak burning feeling and feel like they were going to give out on me. it lasted a little then left. last year, I got this AWFUL itch on my shoulder blade. It was incessant and intense in a quarter sized area. I was scratching it on the wall, the floor, it was ridiculous. (it was in an area I could not reach well.) and then after about 4 days of that, it went completely numb. I couldn't feel anything there, and felt like it was asleep. I figured I had a pinched nerve. It's numbness has come and gone a few times.

I started going to a new Doc, and he mentioned testing for MS if my other tests didn't show anything, because I had mentioned the numbness. I never scheduled any testing. a couple months later I started getting numbness in fingers and toes. some spots would feel asleep, sometimes it'd feel like "buzzing" sometimes burning. After a few days it started to spread. up my arm, shoulder, back, neck face, all on the right side. It would be sort of intermittent numbness. Then, it all just went numb. It felt like the right side of my body, including my face was asleep. I went to the ER, the did a ct to make sure I was not having a stroke, (which I wasn't) and said it seems neurological. and talk to my dr. My doctor was on vacation. It faded out the same way it faded in. Graduallt over the next week or two. Then I began to get this annoying "twitching" all over my body. It feels on the inside that my limbs are jerking, but outside you just see the limb twitch. In random areas, the muscle also began to start to rapidly twitch. I could visibly see it. Arm, face, shoulder, leg.... it was getting a bit annoying. That faded out, but the limb "twitching" has remained and gotten worse. I periodically have times when there are like these light shadows floating around in my vision. hard to describe. One episode of sudden blurriness in right eyes, other than that my eyes have been fine.

I never went to a follow up for ER visit, bc the numbness faded out by the time he was back from vacation. I just left it alone.
This past week the numbness has come back, same as before. My left hand is also feeling weak or slow. it's hard to describe. I keep itching in spots that don't really show any reason for me to be itching. just different areas of my skin. I'm well known for my bad balance, but have been tipping over more than usual. I know when I go in he will most likely want to order an MRI to look for MS as he had mentioned that being the next step back in spring.

My questions are, giving my history of symptoms, would this be the next logical step? And if so, is this something for my GP to look into or should I find a specialist and have them do it? Are there any things about the MRI I should push for to get better results? I know sometimes diagnosis can take a long time, if it really is indeed MS, (and I don't even know if it is) so anything I can do to make sure I'm not in limbo land to long would be great. I'm really growing tired of all of this. Does this even sound familiar to MS, or would it most likely be a waste of money on an MRI? I'm just full of questions.

And I didn't keep it very short, did I? Sorry. :)
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Re: Going through with testing?

Postby MarkLavelle » Tue Jan 31, 2012 1:34 pm

I'd do that GP follow-up to your ER visit, and let him know that the ER said probably neurological. I'd also bring every report from your RA & other testing to every doc you see until you have an answer...

Your GP should refer you to a neurologist, and might even go ahead and order some testing in the meanwhile if he knows about the DXes that have to be eliminated.

If he or the neuro sends you for MRI(s), request both brain and spine (at least cervical spine).


Best of luck,
Mark

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: Going through with testing?

Postby Dlojo » Wed Feb 01, 2012 1:53 pm

Thanks for the reply, and the information. I'll remember that about the MRI.

When I called to set up an appointment, my GP said he wanted me to go see a neuro. This will be my first neuro visit. I'm hoping to get in soon, because today my right side of my face is numb. It's driving me NUTS. Are there any medicines that they can give for numbness? Or is this something to just get used to?

I'm REALLY hoping it turns out to be a vitamin deficiency or something. I've had so many tests, it'd be surprising if they'd missed something as simple as that, but who knows. Here's to hoping!

Thanks!
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Re: Going through with testing?

Postby shucks » Wed Feb 01, 2012 6:03 pm

Make sure you go to a good neuro. Best advice I have ever gotten from my pcp was to drive three h rs to see the best one in my area. I spent this week in Chicago to see one of the best anywhere. Went a thousand miles for it.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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Re: Going through with testing?

Postby Dlojo » Wed Feb 01, 2012 9:52 pm

Very good advice. I've been nervous about that myself so I've tried looking up "reviews" on the two Neuro's my GP threw out to me. Didn't come up with much. I began to wonder, who can I talk to to find out who is the best in my area? We're an hour and a half from Chicago. Was your dr. worth the thousand miles? If so, it may be in the cards to take a drive down.
There's a TERRIBLE one in our city, a family member had him for some angioma, which is the only reason I know how bad he stunk. So I know not to go to "that guy", but now I'm nervous that the two recommended might not be any better.
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Re: Going through with testing?

Postby shucks » Thu Feb 02, 2012 5:05 am

Dr blabanov and the others he works with at rush have a great rep. A lady I saw in the waiting room drives an hour in every month for tysabri and swears it has saved her life. He has partnered with dr burt on HSCT trials and with other folks in his office has pioneered hicy as a treatment in the trial stage. The reviews I got were for other docs in his office, but they seem quite competent.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

Who is John Galt?
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shucks
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