Sound like MS? Or wrong tract?

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Sound like MS? Or wrong tract?

Postby Gdbyrd » Wed Mar 19, 2008 10:01 am

It's long, there will be a summary at the end, so feel free to read or skip to the cliffnotes :)

I'm 24 years old, male, with no significant prior medical history. For the past year or so I've been in excellent health. I have no family history of any illness aside from cancer.

4 months ago a friend noticed my left eye went to the left when I looked up. I thought nothing of it. 3 months later at my eye doctor I mentioned it and he took it seriously. On cardinal fields, I had double vision in the right upper corner and when looking straight up. It is stacked one next to the other. It stays, and I am noticing it more..whether that's because I am aware of it now or because it's getting worse I can't say. I was referred to a neurologist.

I got an MRI, that was normal. However, I have since been told it is of such poor resolution that identifying a small plaque would be impossible.

Neurologist had these findings.
On my left leg were the majority:Clonus(with hyperextension then relaxation), hyperreflexia, babinski(she said it was on the positive side, but not full blown), decreased sensation. On my left eye I also have a delayed constriction with my pupil.

Now, the only thing I have been noticing about myself..is on/off leg ache. It feels like I got done running 10 or so miles sometimes. It happens when sitting, most often I feel it when I wake up in the morning. It is not bad enough to keep me up at night, but it is very annoying. Stretching and movement is the only thing that makes it better. It seems to be totally random too. It's not alway there and changing posture at work, mild exercise, etc..none of it seems to changes things.

I am also always tired. Today is the first day in a long time that I haven't felt exhausted. I went to bed last night at 7. Most other days I am ALWAYS tired, regardless of how much or how little sleep I've gotten.

Cliffnotes: I'm 24, male with no medical history. 4 months ago I noticed I had a lazy eye on the left side. Double vision in the right upper field. Neurologist found clonus, half/positive babinski, decreased sensation, and hyperreflexia on the left leg. Slow pupil response on left eye. Only other issue is constant fatigue and leg ache that's on/off-improves with movement and stretching. Leg ache is most noticeable in the morning or when I'm sitting.

I'm asking you guys, the MS community: Does this sound like anything you've experienced with your disease? The neurologist did not list any diagnosis. She said it could be a variety of things, that something has to be causing it, but what exaclty will need to be ruled out. They did a lab panel that's a 3 course thing over 3 months. That will rule out myesthenia. I'm a nurse, so I have some idea as to a lot of this..and to me it sounds like MS, but I'd just like to get the opinions of some people who probably know a lot more about it than I ever will.

-I just want to have an idea as to what I'm getting into. Thank you for any input you can provide.
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Postby Loobie » Wed Mar 19, 2008 10:09 am

As you know being a nurse, no one could ever dx you based off of text. However, I didn't see you mention a Lumbar Puncture or evoked potentials. I think you may want to have those done to see if you want another MRI on a better machine with greater resolution. How do you do in a sauna or hot tub? I say that because most of us would just shrivel up in a hot tub. That isn't to say go get in one, but if you have any recent stints in a hot tub, how did you do?
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Postby Gdbyrd » Wed Mar 19, 2008 10:47 am

Thank you for responding Loobie. I don't want to get a diagnosis here. I just know MS is usually a disease that is found by ruling out others a lot of times. If there were any other things i should be looking into researching along similar symptoms I'd like to hear them. Or, if it sounds very similar to MS I'd like to hear other things that I might want to start paying attention to.

The last time I was in a hot tub was 3-4 years ago. And I remember enjoying it. I do take very hot showers, and I've never noticed an issue with it. I've read about the nerve condution being optimal in lower than normal body temperature with people that have myelin-destructive diseases. So that is one thing that doesn't coordinate. Last bath was awhile ago too. I live in a warm climate though. And I've not noticed increased discomfort from warm temperatures. It was 100 degrees here last Friday...so it's probably a lot warmer here than it is for anyone reading this, hehe.

What do you mean you shrivel up? When I'm in water I do wrinkle VERY quickly, but I believe that's a issue with my skin(like 5 minutes is the longest shower I can take and still use my hands, the skin gets so wrinkled it hurts to bend it). I'm thinking you mean uncomfort by shrivel up, but I'm not sure.

Thanks again.
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Postby cheerleader » Wed Mar 19, 2008 10:58 am

I think Loobie was referring to an internal feeling, rather than your skin, gd. Many Msers are very heat sensitive. It makes symptoms flare up.
Before my husband was dx last year, I kept suggesting the hot tub, thinking he had a pinched nerve...but his symptoms became exacerbated. Really numb on his left side, unable to walk normally, bladder issues. The hot tub is what sent him to the doc. His MRI told the rest of the story.

But I agree with Loobie...a lumbar puncture might aid dx, as well as a better MRI. I know this sounds kinda strange, but maybe give yourself a break from all the MS worrying. Do something fun, take a break from your work mind set. My brother was an RN, and he used to worry about all kinds of health stuff...he knew too much :)
I really hope you won't have any reason to come back to these boards....
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Wed Mar 19, 2008 11:01 am

Yes, I basically meant to like "wilt up" and just lose all energy. That was a bad analogy. Where do you live where it's so hot! I'm insanely jealous. We have had a rough winter here in Ohio. I wish you luck, but the only true dx criteria I know of are MRI, LP and Evoked potentials, physical and visual.
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Postby Gdbyrd » Wed Mar 19, 2008 11:30 am

Thank you again for the responses.

I'm not at all worried to be really honest. I've been to about 5 different doctors(on referral) before I finally saw my neurologist. Thankfully I had strings I could pull to get me in early. Otherwise I was going to have to wait until July. I have been told a slew of possibilities. So I've already dealt with the shock value of a lot of things, + despite my age I'm still in that 6 foot tall and bulletproop stage-what can I say, I'm a pediatric nurse :)

She has not recommended an LP or any other tests..which makes me wonder what else she may be thinking. I wish I had justs asked her. My wife is the one really worried about all of this, and she was there with me for my appointment so I didn't want to ask too many questions. My wife isn't an idiot though, her too being a nurse. Only reason I'm making a fuss about this is for her. Otherwise I wouldn't look into it and just wait to see what happens. It doesn't bother me to read up on it either. It's a great way to expand my knowledge as MS affects so many different things. Always was a fan of Neuro in nurinsg school.

Loobie, I live in way south Tx. We had record breaking heat this past week, otherwise it's been a solid 85ish degrees for the past month. Our winters here last about 2 weeks :) We have cold fronts, but it's usually only cold for a day or so, then starts to heat back up. I can wear shorts year round :) Sorry about Ohio :*( That sucks.

That's another thing that's unusual as most people with MS are diagnosed in places that are generally colder, ratio of like 2:1 I think. Makes me wonder what else she might be thinking....Something has to be causeing that stuff though right? Not like it just happens, or I've had it my whole life and not noticed it?
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Postby mamahawk » Wed Mar 19, 2008 12:31 pm

Hi Gd,
Well, it certainly sounds neurological... and I'm jealous of your clear brain scan :) I would get a 2nd opinion neuro consult if I were you... just so it isn't something you later found out could have been helped with early treatment.

I also wanted to say that I have a definite MS diagnosis (my neuro seems very sure anyway based on my multiple lesions and Olig bands in my lumbar puncture) - and heat does not affect me. I don't enjoy summer heat, but they don't affect my movement or make me worse physically.

My neuro is always surprised at this - but hot showers or baths don't bother me, so just to show that there is WIDE spectrum of complaints and reactions for MSers.
Dx MS 10-05, multiple symptoms. MRI 20 brain lesions (3 enhancing), 1 spinal lesion, positive spinal, MMA>550.
Started: LDN 12-05, Wheldon CAP: Doxy 2-06, Azith 3-06, Flagyl 5-06.
Now: All is well, no symptoms! 4/2010
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First steps in possible diagnosis

Postby lyndacarol » Wed Mar 19, 2008 3:36 pm

There are lots of us here with different experiences, different suggestions, and different hypotheses.

First, my personal recommendation for someone considering a diagnosis that is possibly MS is to read--begin by looking through the Reading Nook forum here.

Second, I recommend a thorough blood test of everything it's possible to test for. As the site's resident believer in excess insulin as an important role in initiating MS, I think this should include a fasting serum insulin test.

Third, a healthy, low-carb diet is good for everyone.

Best wishes.
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Postby Lyon » Wed Mar 19, 2008 4:46 pm

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Last edited by Lyon on Mon Nov 28, 2011 5:25 pm, edited 1 time in total.
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Postby Gdbyrd » Wed Mar 19, 2008 6:23 pm

Thank you for the responses.

I've been reading every article, study, and tidbit I can online about MS for the past 3 weeks. I will be diving a lot into this website for more information.

They're doing lab work, specifically to rule out myesthenia, some muscle wasting diseases, and vitamin deficiencies, I get some of those results tomorrow..most of them will have to be waited on for two or three months.

I try to eat healthy, but it's difficult...Especially carbs, as one of my favorite foods is pasta.

Only MRI of the brain was done, and the neurologist feels it was basically a crappy film..too fuzzy to be able to tell if there are any small lesions. That looks like a wealth of information Lyon, thank you. I will have to get reading that tomorrow.

The one thing that bothers me the most from all my symptoms is that for the past two weeks I've done nothing but want to sleep. Today started out great, but now I'm pretty well beat..so I'm headed to bed at 9 :*(
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