i need advice - Multiple Sclerosis Message Board

Rena87 · 09-03-2008, 08:04 AM

first to start i want to let you guys know that you guys are so great, i just found out about this website while i was searching a question about my condtition... i i was so happy to see all the support you guys give each other....its so great to find people who would understand what you going through...

i'll try to summerize my conidtion quickly, i have few questions.. 3 years ago i lost vision in my right eye and had really bad numbness on da left side of my body (arms and legs).. kept seeing the specalists for couple of months i got told i got high possibility of MS... my MRI was clean .. i got put on steroid... went back to normal in few weeks and that was the end of my case at this time...

during the 3 yrs i had some sypmtons such leg or arm numbness for a while but i ignored it thinking its probably just some stress.. and by passing of time it kept going away and coming back every long time...

just about 2.5 months ago.. i had exactally the same symptom as i had three years ago which is the blerryness on the right eye and da numbness in da leg and arm... went to the speaclists and he ordered MRI... which had 6 lesions... te neourologist told me it was mild and put me on avonex..acceptance was the hardest part....

MY BIG PROBLEM AT the moment just during the the past 2.5 months i had alot of relapses about 6. i got put on steroid my numbness and my right eye got better. right straight after it . my eye went worth again and numbness in the right side not the left this time got put on steroid again .. anyways the last thing i suffered was numbness in my tounge which started yesterday.. i visited my neuro again today and he suggested for the 3rd time to start Rebif.. so hopefully im starting Rebif next week..

my question that is stressing me most is .. what does this mean having all this relapses in a short time ? i thought it will be awhile between each other.. Does that mean that my case is worseing off alot faster ?when i asked my neuro today what does it mean to have syptoms that i didnt suffer before , he said it means that theres other damges in other parts of the brain ? im sooo scared now??? did any one go through something similiar to this ??? what happened after ??

is there also a big difference between avonex and rebif ?? i hate needles, thinking i have to go through this three times a week instead of one makes me more upset, would i probably have alot of new lesions on my next MRI ???

SORRY GUYS .. I KNOW MY POST IS SO LONG.. BUT MY NEURO DOESNT TELL ME MUCH ?? SO I NEED ALOT OF INFO ??

takecare every one and keep similing

GOD BLESS

brclrk80 · 09-03-2008, 08:31 AM

Rena, first off welcome. AFAIK Rebif and Avonex are the same drug, Interferon-beta-1a, they just use different injection techniques. Avonex is injected intra-muscularly 1x a week, Rebif is injected sub-cutaneously 3x a week. The needle sizes are also a bit different.

Anyone here will tell you that MS is widely unpredictable. You can never be sure how you will be from one day to the next. As with my case, I went from one symptom, numbness in my right foot, to many other symptoms all within the span of a month. My neurologist basically said it happens like this sometimes. I have had two treatments of IV steriods, I am on Neurontin, and I will/should be starting Rebif this week. I still feel the same

There will be better qualified people than I replying so I will let them take over. But good luck with your treatments and I hope you feel better. Take care.

Snoopy61 · 09-03-2008, 09:44 AM

Hello, Rena.

More than likely you have been dealing with the same relapse not 6 different ones. Exacerbations (relapse, flare-up, attack) will have recovery periods (remissions). Exacerbations need to be separated by a month for it to be considered new.

Exacerbations can last months, it just depends on the person and their MS. You can have symptoms that come and go, some symptoms never leave (residual symptoms) and some symptoms go away completely. This is considered remission. Unfortunately, welcome to MS.

Steroids don't work for all symptoms nor do they work for all people. You can have a relapse and depending on the symptoms your having steroids would not be indicated, numbness is one of those symptoms.

Numbness can remit on it's own or it can be a permanent symptom. Steroids may or may not help this symptom. Numbness is considered an abnormal sensation or sensory symptom and many times steroids just don't help those symptoms.

My personal opinion about steroids: use with caution.

The more often steroids are used the less effective they become. There are also serious short term and long term side affects to steroids. Some with MS can go into remission without the use of steroids. Steroids do not change the out come of your MS.

MSNik · 09-03-2008, 08:42 PM

Hi there and welcome..its nice to hear such nice things about "us" we try!

I agree with everything here but did want to add, although Avonex and Rebif are the same interferon, Rebif is stronger....Ive been on it for 2 years now. I love the drug, but I will make a point of saying that my first 5 months on it, I had 2 relpases. One was serious including Optical Neuritis and the other included just overall MS yuck. The first time I was put on steroids and they helped, the second time I choose not to do them and recovered on my own. Rebif, by the way, was brought out to be given more regularly (3 x a week vs. 1x a week) because docs felt that by giving it more regularly, it stayed built up in the blood stream longer and didnt give patients time to "crash" from needing their next shot...apparently it is working. My point to all this is to let you know that being on Rebif may not immediately stop your problems...it takes 6 months to build up to full strength in your blood stream and really work...i was sure it WASNT working by month 5...big surprise when my 6 month MRI showed no activity at all and I completely stopped having side effects and feeling like I was relapsing...I stayed on it and 2 years later am really glad I did.

The advice you got is spot on...this could be a continuous thing, not a new thing each time...and when they get the meds right, you will start to feel betttr, but be warned, starting Rebif is not easy...its a roller coaster, you have to be willing to stick it out and get past the bad to get to the good. It will come.

Let us know what else you have questions about..and again, welcome!
Nikki

glamour girl · 09-04-2008, 06:20 AM

Hi Rena and welcome to our cyber family. .
Sorry Avonex hasn't worked for you. that what I'm on. Hopefully Rebif will be the one to agree with you. I remember when i met my Neuro for the first time. I'd always forget to ask him things. That's why this board has become my best friend. Its great you found this board. You'll get so much helpful advice here, just like these posts.
hope you feel better soon.