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Old 09-28-2010, 05:04 PM   #1
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Questions about McDonald Criteria, Exercise and Walking Stick

Hi Everyone,

Another undiagnosed here! Though I was given the ADEM label a while back, and looking at MS but my 3rd MRI came back unchanged (did have some white spots on it before - leisons, I guess, though no one used that word...). I have had more symptoms now - heavy left leg, tingling all up my left side, and it's quite painful actually - the leg especially hurts quite a bit at times. I have had issues with this side before (actually couldn't walk at one point during the 'relapse' that didn't show on MRI), so I don't know if it really counts as anything new. Although I've not had my arm and whole side tingling this badly or hurting, and I've actually resorted to using a stick for my leg (sort of helps...).

Some questions:

How do I tell if I meet the McDonald criteria? Ok, the obvious would be to go to the doctor, right? I am going on Friday... not sure if my current symptoms are enough to get referred back to the neuro though - but we will see... I am guessing I will though as the more I think of it, the more it does seem likely (though I don't know if I am paranoid! Probably, a little!). I've had 1 lot of things show on my MRI. My lumbar was negative (so that means it's unlikely, right?). But I've definately had more than two episodes of clinical symptoms. In fact, the last time, the neuro was talking about MS and would have diagnosed on the MRI if it had changed... so that does suggest it is a possibility...

To exercise or not exercise? My leg is driving me mad! Rest doesn't seem to be helping- but perhaps I'm not doing it stringently enough??? Should I try bed rest? Or will that make it worse? Or exercise? I went swimming today - I actually swim a lot better than I walk! Guess my doc is going to suggest exercise, but I know there's a debate about it so I wondered if people could please tell me what they would do?

Stick. How do I use it? I've read conflicting things. Is it the opposite side or the same side? I used it on the same side thus far and it does seem to have helped a bit, but is this right?

Thanks in advance for your help.

 
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Old 09-28-2010, 05:34 PM   #2
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Re: Questions about McDonald Criteria, Exercise and Walking Stick

Hi there. Sorry to hear you are feeling poorly. Lets see if we can answer your questions!

First of all, you said you had white spots on your MRI, but no one said lesions.....all MRIs show white spots..so is this "what you saw" or "what your doctor said" ???? White spots are normal on a MRI, however lesions are not...and lesions which glow under contrast (was your MRI done with contrast?) mean that they are active....they arent active, or they are old, they simply show up as white, but not bright white.

SO, having white spots means nothing. Overall. You would have to tell us what the actual report said to tell us anything about that...

As for the Lumbar Puncture. 85% of people who have MS do not have a positive LP....yours being negative, means that you do not have whatever they were testing for...such as PML, meningitis, things like that...there is no test for MS, so because the rest of it was negative, you cannot rule out MS.

As for exercise, water exercise is absolutely the best thing for you- so keep it up! Also, stretching exercises will probably help you....the big thing is NOT to overdo it...or NOT to overheat your body...so yes, exercising is good but in moderation. I wouldnt recommend you take up running!

As for the McDonald Criteria...the only way you can get to it, is to print it out and talk to your doctor about it. Usually only a neurologist can say yes or no, if you meet the criteria, however you can probably at least get a GP to start running the tests - and see if he feels that the referral is worth it.

I wish you the best...being undiagnosed is the hardest part of all. Limbo land is not fun,..
let us know what happens when you see your doctor!
Nikki
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Old 09-28-2010, 07:47 PM   #3
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Re: Questions about McDonald Criteria, Exercise and Walking Stick

As to your walking stick, for me my left leg is the weakest and drags. I keep my cane on my right. If I am walking with my service dog, he is on my right and I move my cane to my left. Is there a correct way? I believe that the side opposite your problem is the correct way, but if you are better the other way- Go For It!

The one thing you should do is to make sure that your cane, walker, or any other piece of equipment is sized for you. My nurse told me to make sure that when your hand is holding your cane, your arm should have a slight bend. If it is more than 25 degrees, you need to shorten the length.
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Old 09-29-2010, 05:11 AM   #4
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Re: Questions about McDonald Criteria, Exercise and Walking Stick

Hi, thank you for your replies!

Yes, the white spots on my MRI were abnormal, and lead to my neuro to eventually tentatively diagnose ADEM. So I guess they are leisons... I did have it done with contrast, but I don't know whether they glowed or not. I'm guessing they probably didn't, or it would have pointed to the diagnosis I didn't get?

I've seen a lot of people who seem to get detailed reports on their MRI, but I've never been given a report (though I do now have the scans - as proof that I actually have a brain!). I think that is where the US and the UK differ?

Thanks for the exercise and stick advice too. I'm going to try the stick in my right hand now, and see how that goes. I'm a bit relieved about that as my left arm was not too happy about supporting me! I think I've got it at the right height, but I'll check. I'll probably ask my doctor when I see him friday. I hope he doesn't think I'm a hypochondriac (quite possible!).

I was happy with the ADEM diagnosis, but since my problems started (Nov 07), I've had several setbacks that made me (and the neuro) consider MS. I was hoping after the last, I could just leave it at that... *sigh* Well, if it is MS, I can't do anything about it, so it would be good to know now. I hope I don't have to have another lumbar!!! Urgh. Think I may be jumping the gun there though!!

Thanks again. :-)

 
Old 09-30-2010, 07:03 PM   #5
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Re: Questions about McDonald Criteria, Exercise and Walking Stick

I never received the mri reports until I called them and asked for them. They were very nice and had them ready the very next day! That was the most distressing day of all. when I saw what the report said and it was completely opposite what the neuro said. Anyway, try calling the place where the mri was done and ask them for the report. You have every right to know what it states. Good luck!

 
Old 10-03-2010, 10:32 AM   #6
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Re: Questions about McDonald Criteria, Exercise and Walking Stick

Spinsinwind, that is so weird! Did you question your neuro about it? I may ask, but part of me thinks it would make me look like much more of a hypochondriac, so I'm going to wait and see what the neuro says when I see him.

My GP has referred me back to the neuro now, and I did have some asymetrical reactions on my legs, so he said that's not the best sign. He asked me if I'd been looking at lots of scary websites (lol), but I said that as the neuro had said he would have diagnosed MS if my 3rd MRI had changed, I didn't need the websites to freak out. But we will see.

He did say using a stick is a bit dramatic for my age. I'm 21 - have had these problems since I was 18. I'm mainly going to keep it in my bag and get it out when I need it.

I'm quite calm about the possibility of MS. Much calmer than I think I should be. I guess I'm not going to freak out until I know it's a definate thing, because I went through it all just over a year ago and it was a pretty emotional time. Hmm. My GP did point out the difficulties of diagnosis conditions like MS as he said if the neuro dx too early, they'd be criticised, and ditto for dxing too late. I don't want a diagnosis until he can be certain. Or as certain as anyone is likely to be. And for that, I want another brain scan. I can imagine that is probably what the neuro will say. I've not made the appointment yet - my GP faxed a letter over to him Friday, so I'll ring up tomorrow. Hopefully I won't have to wait too long.

Last edited by why_did_you; 10-03-2010 at 10:33 AM.

 
Old 10-03-2010, 01:18 PM   #7
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Re: Questions about McDonald Criteria, Exercise and Walking Stick

If your legs are causing you problems, I would keep the cane with you in use. It takes just one fall to put you into a bad situation. I am glad you are headed back to the neuro. Do keep us posted.
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