A QUESTION

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A QUESTION

Postby MOMTO3 » Mon Jan 10, 2005 5:19 am

HELLO ALL,

THIS MAYBE BE A STUPID QUESTION OR ONE DISCUSSED BEFORE AND I MISSED, I'M NOT SURE IF IM POSTING THIS IN THE RIGHT AREA.

I WAS WONDERING IF THERE IS ANY POSSIBILITY, THAT ANY OF THE CRABS COULD MAKE YOU WORSE? CAN THEY BE DOING THE OPPOSITE OF WHAT I AM TAKING THEM FOR? I AM ASKING FOR THE FOLLOWING REASON.
I WAS DX'ED 6 YRS AGO, MY MAIN SYMPTOM WAS NUMBNESS IN MY LEGS WHEN I MOVED MY NECK, MRI'S WERE DONE, AND FOUND 3 LESIONS ON MY BRAIN. I WAS NOT PUT ON ANY MED, THEN I WOULD HAVE EXTREME LEG NUMBNESS OR LOSS OF BALANCE, EXTREME FATIGUE AND LEG CRAMPS, STILL NO MED, HAD ANOTHER MRI DONE AND FOUND 2 LESIONS ON MY SPINE. THROUGH COUNTLESS NEURO'S STILL NO MED, NO HELP. THIS PAST SUMMER I LOST COMPLETE FEELING IN MY HAND AFTER ONE NEURO JUST DIDNT KNOW WHAT TO DO, I FINALLY FOUND A MS SPECIALIST, SHE IMMEDIATELY PUT ME IN THE HOSPITAL ON IV SOLUMEDROL. AND PUT ME ON AVONEX. I HAVE BEEN ON AVONEX FOR 7 MONTHS NOW, BUT HAVE HAD MANY RELAPSES, I HAVE HAD BOTH OF MY FEET GO NUMB, AND VISION PROBLEMS, I NOW HAVE NO FEELING ON MY LEFT SIDE, THE MS DOC SAID SHE WANTS TO TRY TYSABRI, BUT I JUST RECENTLY HAD TO SWITCH INSURANCE'S AND SHE INFORMED ME LAST WEEK SHE DOESNT TAKE MY NEW INSURANCE, SO NOW I AM AT A LOSS AS TO WHO TO SEE, BUT I FEELLIKE WHY DO I INJECT MYSELF AND GO THROUGH THE SIDE AFFECTS TO NOT EVEN FEEL ANY BETTER? COULD I BE TAKING A MED THAT I AM THINKING IS HELPING BUT COULD POSSIBLY BE MAKING IT WORSE? ANY INPUT WOULD BE GREATLY APPRECIATED.
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Postby OddDuck » Mon Jan 10, 2005 5:25 am

Hi!

I'm sure others will answer, also, but I'm up right now, and thought I'd answer it for you, too.

The CRABs are not for "symptoms" of MS. The CRABs are supposed to help slow down the progression of MS, but NOT treat the symptoms. So, no, you wouldn't necessarily see improvement symptomatically from the CRABs. And yes, I've heard others say that the CRABs' side effects only made them feel worse.

BUT................there are many drug options you CAN take for many of the symptoms you are describing. Even your PCP, if he's knowledgeable enough, can prescribe those for you.

The other thing is that you might not be RRMS, but have some type of progressive form of MS. Which, in that case, the CRABs probably won't help at all. Especially not Avonex - not for progressive forms of MS. Betaseron or Rebif might maybe.

Hang in there! You need to try to find a new MS specialist ASAP, though. It doesn't sound as if it should wait. Where are you located? What country or state?

Deb
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Postby MOMTO3 » Mon Jan 10, 2005 5:27 am

THANK YOU FOR YOUR REPLY

I AM ON LONG ISLAND, NY
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Postby OddDuck » Mon Jan 10, 2005 5:29 am

Check the National website for the NMSS (if you haven't already). They will have a list of MS specialists for your area. The only thing is, most neuros need a referral from your PCP in order to make you an appointment.

Deb
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Postby MOMTO3 » Mon Jan 10, 2005 5:41 am

I COULDN'T SEEM TO FIND NAMES OF DOCTORS ON THE WEBSITE. I DID GIVE THEM A CALL FRIDAY THOUGH AND LEFT A MESSAGE SO I AM HOPING I WILL HEAR BACK FROM THEM TODAY. DO U KNOW OF A CERTAIN SPOT ON THE WEBSITE I MIGHT OF OVERLOOKED TO FIND A DOCTOR?
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Postby OddDuck » Mon Jan 10, 2005 5:52 am

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Postby MOMTO3 » Mon Jan 10, 2005 5:54 am

THANKS SO MUCH FOR THE LINK AND FOR REPLYING SO QUICK.
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Postby OddDuck » Mon Jan 10, 2005 5:57 am

You're very welcome! Let me know how you fare!!

Hang in there!

Deb
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Postby adjanimals » Mon Jan 10, 2005 7:15 am

MOMTO3,
Since your in the NYC area, I recommend you see if you can check into seeing Dr. Bihari to try LDN. Check out the web site www.lowdosenaltrexone.org I have been on it since October and have had good results, not the dramatics others have had, but a overall good feeling. No side affects at all. There is another site for LDN users, http://groups.yahoo.com/group/lowdosenaltrexone
I got my prescription from another doctor.
Forget the CRAB crap, to many side affects.
ADJ
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dr bihari

Postby Daunted » Mon Jan 10, 2005 10:53 am

I have never met Dr. Bihari but I would recommend you go see a MS specialist (which he is NOT). There should be plenty in your area.

Many people report (on the Internet) that LDN is helpful for them, but there is not a single published scientific study showing that it works, although trials are in progress.

If you're relapsing on Avonex there are many possibilities, but LDN naturally has to come last, since it has little scientific support.

Go see a MS specialist.
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Postby september1968 » Mon Jan 10, 2005 8:34 pm



My Neuro told me if someone gets worse on an interferon, they probably don't have MS. Have your docs run all the other tests for you to exclude other diseases?
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Welcome, MOMTO3

Postby flora68 » Mon Jan 10, 2005 9:48 pm

I'm so sorry you're having such a rough time. :( It's not fair, is it? I mean, not only does MS totally suck, but so do most of the treatments! :roll:

And of course if there was a proven, safe treatment for MS that was 100% effective for everyone, you'd be fine, I'd be fine, and we wouldn't need this website!

But do not give up. This is really a much better time to be an MS patient than it was when you were diagnosed. We've got Tysabri now, as of a couple of months ago, and of course LDN, and numerous other promising treatment modalities (like antibiotics, etc. ) Surf around this site and others so you can read other patients' experiences with them.

As for your question (which wasn't dumb at all, by the way), I doubt there's any way to know with any certainty whether the Avonex is making you worse, unless you d/c it and get miraculously better, which I wouldn't expect or recommend.

But it seems obvious to this non-physician that you're on the wrong medication.

Maybe it was the right med for you in the past, but it sure seems that Avonex simply isn't working for you anymore at all (if it ever did ), and that your MS is doing it's thing as if you were untreated.

And, as Deb said, (hi deb :wink: !), it sounds possible that you might not have RRMS, but a progressive form. Or maybe you do still have RRMS. But regardless you obviously need to be on something different.

I hope you can get an appt with an MS specialist who takes your insurance very soon. Bless your heart, you really need some help; obviously more than we can give.

This is all just my opinion of course, worth exactly what you paid for it, but if I were you I'd try the Tysabri if it's offered by the next doc . It's brand new, so it's kind of an unknown, but it has a very impressive track record from the one year trial, reputed to work twice as well as the CRABs do, without serious side effects for most patients.

Personally, I'm also pinning hopes on Tysabri, having failed Avonex and Copaxone. But if my insurance won't cover Tysabri, I'm definitely calling Dr. Bihari ASAP! I considered trying LDN along with the Tysabri, if it's OK to combine them, but decided not to regardless because I'd rather try one thing at a time to see what, if anything, works.

Anyway, I hope you get some effective help soon. Hang in there! :) .
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Postby MOMTO3 » Wed Jan 12, 2005 5:34 am

THANKS SO MUCH FOR ALL OF YOUR RESPONSES. SORRY IT TOOK SOLONG TO SAY SO, IT HAS BEEN A ROUGH WEEK, I MEAN I FOUND OUT I HAVE TO SWITCH DOCS RIGHT IN THE MIDDLE OF A HORRIBLE FLARE. MY WHOLE LEFT SIDE IS NUMB, BUT MY KNEE FEELS LIKE MY SKIN JUST DOESNT FIT, AND IS TOO TIGHT, AND IT FEELS LIKE IT IS BURNING ON FIRE, SO TRYING TO DEAL WITH ALL OF THAT AND FIND A NEURO TO TRY TO HELP. BUT I DO, VERY MUCH, APPRECIATE EVERYONE'S REPLY. THANK YOU
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Postby HarryZ » Wed Jan 12, 2005 1:05 pm

My Neuro told me if someone gets worse on an interferon, they probably don't have MS. Have your docs run all the other tests for you to exclude other diseases?


I'm going to have to respectfully disagree with what your doc has said to you about the interferons.

I have followed MS research for many years and I have never heard a MS doc make that statement nor have I seen that particular comment made by anyone on the several MS forums that I follow.

Some MS patients can become worse after taking an interferon. I have some friends who have MS and this is exactly what happened to them. Any time you take a medication that has an effect on the immune system, this is a possibility.

Usually, if a patient doesn't do well on one of the interferons, the doc will change them to another interferon or possibly Copaxone. Just make sure your doc gives you all the pros and cons of whatever drug you are planning to use so you can become part of the decision making process.

Harry
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