Multiple Sclerosis (MS) Support Group

First of all... welcome. This is a great place where all of us support each other and really care. As far as your symptoms and medicine, being abnormal with MS is completely normal. :) My lesions have all been in the spine, some MSers are all in the brain, etc. Everyone is different and reacts different to each of the meds. So, it doesn't necessarily mean you are worse if they changed or meds. Hopefully the rebif will work for you. Take care and God Bless.

I can't help you, my hands have become numb and forearms a few times but I never thought enough about it to talk to a doc. I'm sorry .. I asked my doc the same question you are asking..."am I going into progressive MS?" he said no. So I guess I'm not..but I wish you all the luck in the world.. and welcome! I like this site!

i have the L'hermitte's have had for about almost 4 years now...grin.. never assossicated it with ms.. i always thought it was a pinched nerve and it would work itself out...grin...
when i bend my head down i get the numbness going all the way down the arm to the fingertips..and just at the very begining of the top of the legs...
point being.. been there for almost 4 years.. hasnt gotten any better.. hasnt gotten any worse..
didnt know i had MS or even suspected it until november..grin..
so i dont think it is a sign that things are going to get worse for me at least that is the way im looking at it...smile

I have had L'hermitte's sign for as long as I can remember... Probably about 2 years before my Dx.. mine doesn't go away or get worse.. It is an irritating little thing when I go to get my haircut though.. LOL I keep my hair long now.. so it is not an issue anymore...

As far as lesions go... I have them in my brain and spine and my most recent MRI (2-3 weeks ago) found a few more than the last one... Am I progressing? probably... I haven't lost a lot of functioning yet.. so I just keep on keeping on...

When I had my first attack and was diagnosed I was experiencing teh L'hermitte's Sign. It was an interesting situation. I would tip my head forward and baam...down the spinal cord to my butt. I have experienced it off and on every since the first time, but to me it is more of a obtacle in life than a sign of progression. I would have them and still be working 60 hours a week. I don't think that you have to worry, it such something that is reminding you that you have MS. As for the change in medications I would ask him or her the question that you have asked us. He or she may have maded the change now, because refif is newer on the market than avonex and he felt it may be better for you. Best wishes...hugs to you...

My wife was diagnosed 2 years ago and is on Rebif.

Rebif is the best MS stopper short of Chemo or steroids that they have right now, even over Avonex, they're almost the exact same medication, but 3X a week instead of 1X..

I am guessing that what your Neuro is trying to do is make sure that things don't progress, but "worsening" has more to do with your symptoms as lesions can form anyplace anytime and if they're not affecting things, it doesn't matter a whole lot to you...

Main thing the Dr's try to do is shut down active lesions before they form the "scars" or sclerosis that represent dead nerve tracks. If things continue to worsen, then the Dr. has one or two more choices including Novantrone which use to primarily be a chemo drug.

By the way, Optical Neuritis, L'hermittes sign, and the numbs are the primary manifestations of the MonSter.

Plus I am betting that there are times that you feel like a complete witch in terms of your emotions jumping around a bit. MS seems to have that destabilizing effect on emotions sometimes. If so, it's part of the package and you'll have to work with loved ones to create some safe non-stress ways to allow you to blow off steam. Thing is, it's normal for the disease, not some defect in your character, etc.

Hugs and welcome to the best MS support location I know.

I was on avonex for my first two years untill I had two flares within four months -my legs went semi numb- so my Dr. switched me to rebif and I have not had serious exacerbation for over a year. My hand has been a little numb since I was DX in 2005. It seems everytime I've had a flare Things have gotten a little bit worse-just a tiny bit. When I started rebif the injection site reactions were a problem but I found out that the more fat you inject into the better. I Like to inject high on the upper thigh near the hip. The redness will go away within a week compared to doing on the lower thigh where the redness stays around for three weeks. Switching to rebif is a good thing i feel it has helped me.

Trileptal has ended L'hermitte's for me. Trileptal, trileptal, TRILEPTAL! I know everyone is different in how their MS responds to medication, but it's worth asking your doctor about it. Any issue I have had with tingling, shocks, spasms, Trileptal stopped cold.

So, really, ask your doctor about Trileptal. You're not necessarily getting worse. You can't tell that just because of new symptoms. Be well!

I've had the Hermit thingy ever since i got my first symptoms, and my right arm and hand has never fully recovered, i was on Rebif for 4 months, but i relapsed bigtime while on it ( My Neuro says i have a extremely aggresive and fulmented MS, whatever that means!)

So this week i'm starting Tysabri, and if that aint working he's talking about chemo.......:(

As far as i now the numbness in arms, hands and legs is "normal" in MS patients....

How strange that all of a sudden this post gets a bunch of activity? I originally posted it over a year ago. I have been on Rebif for a year now and it hasn't really helped much. I've been on Novantrone treatments since January 08 and they have helped a lot. Thank you to all of you who replied. I'm finally getting used to this MonSter (as someone put it, I like that) and just live my life and don't let it interfere anymore than it absolutely has to.