New Specialist Visit Update

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Regular Member

Date Joined Oct 2006
Total Posts : 77
   Posted 12/7/2006 6:44 PM (GMT -6)   
Had my new SPecialist Appt...

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OK, so went and saw the new MS specialist for a second lookover. He was FANTASTIC first of all... He said I have 90% probable MS. Looked at my MRI CD-ROM and said they are unclear... Said he didnt see enhancement and the lesions are not typical for MS. But based on my positive LP and symptoms said its 90% however, he wants to redo my MRI's tomorrow for the brain and spine because he says the images are not good quality. He said if he sees more clarity in images and can count lesions, then there can be a definite...He said regardless he wants me to consider meds and gave me all the info. Also said I should consider IVY therapy for my hand and it can possibly come back. But thats a "maybe" and IVY therapy has side effects... So again, its a balance scale...Like do I want my numbness going away or should I risk ivy therapy for it??

He also mentioned that the meds have many side effects...I am also in childbearing years and he said meds and childbearing dont mix. Said starting meds can delay me having a child and i would need to stop meds obviuously when I am planning pragnancy...So I am planning to try next summer... So I dont know if I WANT to start meds...especially if its not definite and the side effects are so great...

He said he wants to discuss all this with me and my husband together. Wants to see us both on Dec 21st... But such a wonderful and sweet doc... SO all my MRI's all over again tomorrow... FUN. And i am in Europe next week so I said can I have them when I come back?? He said he prefers to do them asap. And I said either way I wont get results until I come back. And he said "Arent there phones in Europe??" Hmm...But I dont know if I WANT to know while I am on vacation....

So I asked him "But do you think I am severe enough to start meds?? Because I dont feel sick." And he said "4 months ago you woke up with your hand numb. Tomorrow you could wake up with your eye not working." Arghhh...Anyways, i the next appt he will discuss this with hubby...

But what is concerning to me is that he said my lesions are unpspecific and are not typical in MS...So what if its NOT MS?? I mean, I do have a positive LP... And numbness, and a few lesions...I have been tested for lyme, lupus etc.... And they were negative...

He said ADEM crossed his mind. BUt because after my hand my leg is also weak and my other hand is also weak and achy, he thinks I may have had a mild second episode.... How confusing.

Anyways, lots to think about but at least I saw a great doc and one with lots of info...Also, met a lot of other folks with MS but they had the progressive kind so were all disabled...Was a bit frightening at first. But then the doc told me they were all severe and progressive....

Veteran Member

Date Joined Jun 2005
Total Posts : 2135
   Posted 12/7/2006 8:12 PM (GMT -6)   
Well, as an "outsider", it doesn't look confusing to me at all.  He's saying he's 90% certain you have MS...and you've had at least one episode which has left residual disability (your numb hand). And indeed, you could wake up tomorrow in the middle of a much more serious exacerbation.  And perhaps you've already had a second episode (the other weak hand and leg) you certainly meet the general criteria -- 2 episodes, separated by time and space, affecting different parts of your body; a positive LP; lesions (although not clear) on an MRI...
IV therapy does indeed have potentially serious long-range consequences.  You do have to weigh them against dealing with a relatively mild problem, your numb hand.  As to your claim "I don't FEEL sick!"...I'd suggest you go back just here on this forum and re-read your posts...where you SOUND sick, and SOUND concerned, and SOUND like you want to begin treatment right away!
The CRABS have consequences, too.  As does MS. Even with the CRABS, there is the potential that you could become significantly disabled.
I personally made the choice to not have children, because I didn't know my future (and of course this was well before there were drugs available), and didn't want to be disabled and trying to rear children.  I've heard over and over again, folks with MS struggling to be parents and realizing that they can't do stuff other parents do, and feel like their children suffer from their I feel I've made the right choice.  But of course you and your husband have to talk about that, and think about potential future issues, like financial resources, your employment possibilities, juggling children and potential disability, all that.
Have a good time in Europe! I've only been to England once, years and years ago...I should plan to go back.  I have traveled to the Philippines, though (and I wouldn't recommend that! While we had a wonderful time, it was VERY stressful, a person in a wheelchair in a 3rd world country!)...
...I am not a doctor, nor health professional, and don't pretend to be one, here.....

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