I need help please. I thought was getting better, or maybe I should say not worse, but I was wrong. I had my 1st ty infusion on 3-18. 3-19 was a great day. Except for the numbness in my leg I did not feel any MS sx. On 3-20 I got sick and started to have a few ms sx, but they were the same as ones I had before. Well the same old sx came everyday till about Tues. On Tues (I think) I started to get new ms sx. I now have had the tingle deal in my right leg, I had a bad attack with my right hand, and I've about 4 attack with a stiffness in my jaws. I have new heard of ms hitting the jaws but I guess we have stuff there too. None of these have lasted for 24 hours but I am getting new stuff. Also my thinking is not clear and my speaking sucks. I thought I was out of the relapse. Am I or not. Everytime I think I may understand the MS deal I get confused again. If I am out of the relapse, is this the way the rest of my life will be. Please tell me what u think is going on. Is this what you mean by good days and bad ones. Does this mean the ty might not be working on me. My case is so last stage or sever till they tell me the next relapse may take me out. I am so scared. What if this is not the right drug for me. I have no where to go. I'm scared.

Thanks for the post, you don't understand. I have had 2 neuros and 1 GP who saw the mri state they all believe I have had this for years, prob 10 plus. It remained silent or too silent for me to worry about a prob. It distroyed my brain. I am very, very advanced. They all state I have no other choice then TY. If this drug does not work-nothing will help. I can't take steroids and stay on TY. This is my understanding. I don't know what is going on - I just need to understand what is going on. By take me out I do mean complete disability!

Sheena,

Sorry your are feeling so bad! I understand about being scared. I think alot of us are. Tomorrow is my one year anniversary from being diagnosed (March 29th). I also did not have any symptoms except a little numbness on one foot which was attributed to a pinched nerve. On my first MRI they discovered several lesions and I also have one on/in my spinal cord. I only am telling you this because my neuro has not suggested my MS is severe at this point even though I have several problems.

I think Keri included alot of important information. If you are sick and on antibiotics it can cause a pseudo flare. You also cannot expect to feel immediately better after your first tysabri infusion. You can also be on steriods while on tysabri although I doubt if most neuro will prescribe them on a regular basis.

As far as being out of a relaspe I really cannot answer that one. I do know now that being in remission does not mean that all of your symptoms disappear. You may have to deal with residual symptoms and some may go away and them come back.

Also tysabri is generally only prescribed for remitting relasping MS so I am also confused about the severity of your MS.

I hope you called your neuro today. If not you should call them first thing on Monday so you can get an appointment.

Barb

bumping up-
I copied from Ty sticky - since new & more symptoms happened for sheena.

Hi, Sheena.

With MS it is common for many to deal with symptoms, it's just part of the disease. Remission doesn't always mean your symptoms go away. Some of the symptoms will go away completely, some decrease in intensity, some never go away and some go completely.

This happens rather your using a DMD or not or even if you use steroids or not. These drugs are not miracles. they work for some but not for others. Living with MS is about adapting.

If you get a cold, flu or infection your MS symptoms will increase, temporarily until the cold, flu, virus or infection is gone.

Sheena, I am not trying to be mean, nor minimize what you are experiencing but what what you call a bad attack could be considered quite mild to many of us.

An attack for me - the almost complete inability to walk. Numb from the waist down. Extreme pain - I cry tring to put socks and shoes on, if I can even get my shoes on over my swollen feet. Anything touching any part of my skin brings tears to my eyes because it cause extreme pain - clothes, sheets, and water. What I really hate is my husbands inability to hug me or offer a comforting touch because the pain is too extreme. It hurts to walk with or without shoes and getting from one area of the house to another takes a long time with tears because of the pain and weakness.

Then, finally after a couple of months I usually start to see some improvement but I have a long road ahead. I now need to start all over again to try and regain my mobility. Trying very short distances, maybe from the house to the mailbox (being outside and feeling the sun feels soooo good) but then I get back to the house and sit down to cry - I'm exhausted, weak, my legs are vibrating/buzzing like crazy and I need to sleep.

My experince with this disease can also be mild to what someone else experiences.

I have some permanent symptoms - L'Hermittes, decreased sensation in my feet yet they are hyper-sensitive, vibrations/buzzing and leg weakness - if I didn't have the stiffness I would not be able to walk without a mobility aid.

There are many here who believe very strongly in tysabri and some have had wonderful results but there are others who have found themselves worse than when they started the drug.

Great response, Snoopy.


Sheena, you have 5 other choices, according to your doctor. Tysabri was chosen because it is "theoretically" more aggressive, but these drugs work differently on each of us. Even though Tysabri works for more people, or if it reduces more relapses (on the average person), that does not mean it is going to work on any one individual AT ALL.

You were sick when you had your first T infusion, and you are probably still recovering from that sickness. Also, it sometimes takes 4 - 6 months for people to see improvements of any kind. If you are not having an adverse reaction (which it doesn't seem you are), then you probably just have to bide your time to see how this medication pans out in the long run. However, you have 5 options left, IF Tysabri doesn't work . . . just like the rest of us (at least those that can even use these meds at all).

Don't worry.

Cherie

Sheena,

I hope you'll feel better soon! I just wanted to share with you that I personally felt worse for the first several infusions, with more fatigue, more stiffness and pain, etc... Now I'm doing better and I get my 11th infusion next week. I hope you have good results with Tysabri!

hi Sheena,

I go for my first infusion on april 30th and from what i heard about the drug that the first one is always the worst. you have to think of this is a strong drug hitting your body like a ton of bricks.

remission-thats something my body hasn't done yet, thats why I am trying the tysabri

I have only had ms for not even a year and I have had three relapses. And I end up in a wheelchair with pain in my legs.My left leg goes almost paralyzed.

Remember that the drugs are not to stop ms but to slow down the disease. I know its hard to adapt but you will learn.

Make sure to always tell you neuro about your issues that you are having. Since the ms i have bad memory and so I keep a diary of how I feel everyday. Than you can see day by day how you are changing

hope that helps