Opinions, advice etc...

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Opinions, advice etc...

Postby Kemond » Thu Apr 12, 2007 5:52 am

Yesterday I had my first appointment with an MS Specialist. The neurologist I was originally sent to was less than knowledgeable about MS, so it was necessary.

The original neurologist (11/06) suggested Copaxone, and a possible MRI in a year. Her opinion of steriods was that I shouldn't take them unless I have a debilitating attack. I have been taking Copaxone since and waiting for the specialist appointment.

The specialist after reviewing my MRI confirmed the MS diagnosis (no surprise there), but was shocked that with the number of leisions I have that are active that I would be taking Copaxone. Not only does she think I should switch to Rebif, she wants to start me on a course of steroids and possibly an inhibitor. Apparently I am falling in a curious place, although I have many leisions and they are active, I was diagnosed after what she called weakness complaints (numbness), and not loss of function, which have fully recovered completely (thank goodness), and she wants to ensure that the inflamation does not cause anything more serious.

She has scheduled me for another MRI and based on the result of that scan she will either suggest just the drug change, or the drug change with the steriods and other medication.

Any comments or advice.... I obviously feel her opinion is more informed and she is associated with an MS clinic and makes no guarantees of anything.
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Postby jimmylegs » Thu Apr 12, 2007 6:17 am

i can only tell you what happened with me, i mean there are a lot of people on various kinds of treatments here, but when i went to the peripheral neurologist (who still sees me periodically for follow-up even though the ms clinic ignores me), he referred me to the ms clinic where my diagnosis was confirmed and straight away they gave me a rebif prescription and started me on the liver monitoring tests. i had brought in all the info i had found about various supplements and the doctor glanced briefly over it and commented that the vitamin D was a good idea. when i decided against rebif that was it - the MS clinic has ignored me ever since. so, no drugs here, they are not even monitoring me. but, my numbness has never fully left me. so anyway yea, the MS specialist i saw was full on about rebif too. but nobody ever suggested that my attack was worthy of steroids, and i couldn't feel anything properly from my collarbone down. i had no position sense and had to do everything with visual feedback, couldn't grip things, it was weird. still nobody ever said steroids. if you don't have any symptoms, i don't know why they would suggest them! they must be really freaked out by your mri. i am not sure what you mean by an inhibitor.
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Postby Kemond » Thu Apr 12, 2007 7:35 am

Thanks for your reply - I misspoke she said "oral immunosupressent" not inhibitor (I'm glad I brought a pad and pen).....
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Postby thinkingoutloud86 » Thu Apr 12, 2007 9:06 am

to begin with...let me say i'm sorry about the news...

i think you'll find that we've all taken our own path to get to the point that we're are at now...one of the most common stresses that we all seem to be plagued with at the time of initial diagnosis is "how and what should we do in the form of treatment"...

the steroids are typically used to treat an attack...the idea behind them is that they supposedly reduces the inflammation in our central nervous system and help slow down and/or stop the MS attack...I've heard from others that their attack subsided to some extent while on the 'roids, but I didn't notice any improvement for myself...

as far as which medication to take afterwards, that seems to be the million dollar question with what we have available now...i am on copaxone and have been doing pretty well with it...but, i think you'll find others on rebif or the other interferons who say the same thing...and there are still others who utilize other approaches and don't use any of the CRAB meds...each situation has its pros/cons....what i would suggest is that you should ask as many people that you can about what they like and don't like about their approach...also, there is much info on the internet as well...

good luck,

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Postby connieb » Thu Apr 12, 2007 9:56 am

Copaxone takes about 6 mos to start working so that's probably behind her thinking. My neuro says that for whatever reason some people do exceptionally well on it and for others it doesn't work, but which group you fall in can be determined only by looking at your MRIs over time in conjunction with your symptoms. Lesions come and go and the whole issue of how they relate to disability and symptoms is murky anyway, so that in some countries (and in the US by some neuros) MRIs are not ordered on a regular basis at all, but are only used as a diagnostic tool and later if symptoms warrant it. All in all, I think that relying on MRIs, as well as treatment routes to take, is all a judgment call really-- personally I'd get a second opinion as well, just to get a different MS specialist's perspective.
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Postby Kemond » Thu Apr 12, 2007 10:15 am

I thought it was strange to go on steroids as well, considering right now I have no symptoms, but I think the active leisions have her concerned. I was happy to hear her order the second MRI which will come about 6 months after I started on Copaxone (I'm secretly hoping its working because the only downside is the site redness), so I can get an idea of whether or not it is doing anything. I had read throughout this forum about people only having 1 MRI to base their progress on, so at least I have that going for me.

That being said I have 2 more specialists to see in May. I intend to see at least one if not both of them before making any significant changes to my treatment. I figure if the second one (at a completely unrelated clinic etc...) agrees with the first I can start making changes and get the third one on board.

Thanks for your thoughts!
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