there may be a breaktho for the brain infections....my neuro said last week there is going to be a blood test avaliable soon to see if a pt. has antibodies against tysabri..if it comes back that you...
Tulips, just posted a question about ldn I missed your post..I was wondering about it too.I would love to get off xanaflex if there is something else out there that isnt a sedation..i did read about...
It has been awhile since I posted.I am glad to say I have NOT been in the hospital for 6 months which is great!!The tysabri and ampyra seems to be working. Althought my dr. says it should really kick...
There isnt an auto-injector with avonex. After you get used to it it doesnt take long at all.My side effects at the time was the heavy legs the day after the shot.That had to be a side effect. But...
Yes the needles are overwhelming.It helps to ice up the area before you inject..I really think you will be surprised that it really "looks" worse than it is.Have you tried asking somebody else to...
I was on avonex for like 12 years.Except for the heavy legs I thought all was good. I wasnt flaring.The dr.put me on steroids i was on them for 31/2 years. Then I had 3 fairly serious flareups got a...
The avonex shot really doesnt hurt.I would have stayed on it but I was having too many flareups.So I tried rebiff and could only do a half dose. Still too many flareups.Dr. said the a,b,c,r drugs...
The steroids do help yes.But I will be off of them soon once I start the tysabri. Which will be in 2 weeks.Steroids helped BUT they cause problems of their own.Both legs would get HEAVY when I was on...
I get the heavy legs,It is mostly the right one.It gets so heavy I cant move it..They have given me xanaflex to try and limber it up.But it still does what it wants.I have an A.F.O. brace too even...
Stella Marie, Thanks and no tysabri is an infusion it takes about an hour to get then you have to stay an hour to be monitered...Some of the side effects are similar to the other therapy's..But with...
for sure and of course it couldnt have been just one toe!!i had an appointment with my neuro yesterday.and i need to be off rebif for six weeks..then i start the tysabri.i had to do something because...
It has been awhile since i posted..Just spent 18 days in an inpatient rehab after taking a fall and breaking 3 toes..And that happened because of yet another M.S. flare up..My neuro said that the...
That will be good if you keep me posted on your progress...I know Lynn is doing real good on it too.The guy that was on it actually had to drop out of the support group because he just progressed to...
I think about it all the time.I saw the doc. today.He is gonna keep me on half dose rebif for awhile and we will see what happens.That way I have time to ponder everything..Thing is I know that...
Thanks Lynn and Barb.. It has been rough.Iam real nervous about the tysabri..The new doc. isnt pushing it as much as the other one did.Right now they took me back too 22mg of rebif instead of the...
/community/emoticons/confused.gif I just had another flare wound up in the hospital for another 4 days..Steroided all up again..Wasnt sure if it is the rebif or an exaerbation..MRI says more active...
thanks were you on anything else before? i dont think i will mind the smaller needle!!! barb...
Saw the doc. today and we are going to switch from avonex to rebiff.I need to wait two weeks with nothing then if the insurance is a go start the rebiff. Am a little nervous about it all.Avonex was...
Thanks Lynn, You are pretty much the only one I know of that the tysabri is working for. There are 2 ppl in the ms support group that it just isnt helping.And 1 had to be taken off. But I do know ppl...
thank you gretchen guess i just have to ride it out and see what the doc. says.then i will know what is up..least there are options out there.. and we can benifit from it all..good luck at the...
/community/emoticons/sad.gif Found out I have more lesions in the left side of my cervical.Caused me some problems and a trip to the hospital another 5 day stay..Doc. says 2 flares in 4 months we...
I called the specialist's office today to see if I could change my Nov. appointment.They said no they would cancel it and they had nothing open til April 1 2010.That made my decision much easier to...
Looks like I am going to get the wheelflex soon.The guy said he would loan me one until everything goes through with the insurance and all. I am waiting for a script from my dr. too but they said...
Good for you Gretchen/Gertie...I am glad everything worked out for you.....Now you can be "cool" everybody else will just have to wear their sunglasses when they are near you....barb...
thanks everybody.i hope to be back on chat monday key word hope lol.i am starting to feel better.i am taking meds. for bones and if it becomes a problem there are other things to explore.and i am...
/community/emoticons/sad.gif hello all. it has been awhile since i have even posted here.like my topic says i am being steroided i just got out of the hospital after spending 5 days there. the DX...
Thanks for responding.If the inderal doesnt work then I can try klonopin.I am taking 10 mil 3 times a day I am still tremoring but I am just a tad steadier.Plus I am only up to 2 pills a day for...
My doctor just gave me a script for inderal to try and help with my tremors.Hopefully this will help. The myscoline didnt. We can always try klonopin if this doesnt work.Does anybody else have hand...
I am on solumedrol IVevery 3 months for 3 days.Sorry that you have to drink it. And no it isnt a pleasant thing either way.Although after I finish the round I have to say I notice a difference...
The walkers are wonderful!!! When ya fizzle out it has a seat built right in...I know how you feel using it at first but they really are worth having. I have 2 one from my dr. and a cast off from a...
/community/emoticons/sad.gif Relapse remitting to secondary progresseve.I just had a dr. appointment and was told that I am moving towards secondary progessive because I dont seem to be getting over...
Hi and welcome I do have ms and after the mri's i would get a sensation that my right cheek just below my ear was bleeding except it was cold.It came and went.I had/have the eye jerks I think it can...
/community/emoticons/sad.gif I have tremors in the hands I have taken keppra and am now on myscoline...I still shake something terrible I see the dr. next week so I am hoping there is something we...
bump...
I am on a 3 day steroid treatment every 3 months so far no problems.....Except for the crashin feeling in about 2 weeks time.But otherwise no problems and I can tell when I need them again because I...
Ican be paying attention to every step I take and I still go down............Nooooo balance..I have been pretty good lately but there for awhile all I did was fall..........hope all goes well for you...
frannie55 just a hint if your upper body is functionable try getting a trapeeze...They should have them at the places where u buy scooters and accsesseries..And the ms society gives u 500 dollars a...
Great news congrats.Every once in a while things work out for us!!Glad that it moved so quickly for you...pokey79...
Wow how cool you came from another site to offer support!!Gee Lynn hope that makes you feel better...barb /community/emoticons/scool.gif ...
Lynn I can so understand your worries about passing ms on to your daughter They really havent came up with a definite answer as to whether or not it is heridatary..i knew a woman who indeed got the...
Loudog I had a friend whose husband had ms(he passed away from something else) their daughter has progressive ms she has been in a nursing home for awhile now she is 44. The dad also had a neice who...
Lynn I thought that was intersting . And if you are in the primary progessive form ya really dont have much to be worried about as far as being tested as such..And Lynn I too think in our liftetime...
Hi and welcome Willowmom you have found a great site I have been on both forms of avonex and the next day is always pretty bad meaning the legs are usually heavy hope they told you about the tyelnol...
Wow Barb that is terrible! I hope everything works out for you....One thing after another for you....But you will get throught it...May take a little while but you will like everbody elsesaid you are...
I too have the heavy leg syndrome...the day after avonex injection can add to it also..Ask your nurse about it..If you are not steady with the cane rollater walkers with a seat are the best you can...
Good for you Lynn hope all continues to go well for you!!!!barb...
Hi I have been on avonex for almost 8yrs now and yes the needles are a bit much....But you can get your dr. to order a smaller needle they are doing that now.You can always call biogen idc. for the...
Thing is the falls happen so fast I dont think I have time to panic.....Yes Lynn I use a walker all the time...I lock up sometimes just over taxing the muscles and if anybody takes avonex the day...
You would think I would know by now but............................I was just wondering if anybody who takes a fall and has their muscles "lock" up. Is it from the fear of falling the "shake-up" or...
Wow Barb......Better to get off an be safe.....What a shame like i say hold your head up high your doc has to have something else in mind for you..Like everybody else said you are in my thoughts and...