Multiple Sclerosis (MS) Support Group

Welcome to the group. You are never alone here... I have been away from this site for quite some time... about 2 months I think... but I am BACK now !!
Next week will be my 18th Tysabri Infusion & I still love the stuff.

Good luck with all you want to do & hang in there..... wrtie when you have the time to share with all of us.

I will be back soon with a great story of how stopping ONE med has made my life better !!
-J

Welcome to the ms group at DS Ben. I have been here for a while and have met some really great people with ms who do understand what we're going through better than those who don't have this dreaded disease. I hope you find what you're looking for here.

Have patient with the Ty your not feeling the full effects yet...your profile says 6 infusions. Perhaps you are just starting to feel better. After 6 months I began to feel better....the 14th one was best for me. The 15th one is next month...so no experience after the 14th. But keep an open mind yet. Your doc may be proven right soon. And Welcome.

Welcome to the group!

Lots of good advice here and very caring people! Welcome!

woke up this morning and found 5 replies in my email. hello to you all!

sounds like everone seems to have a healthy respect for the tysabri. i must admit, after hearing some of the wonderous tales about ty from my neuro, i dove in with the utmost enthusiasm. the story that sold me was that he has a patient that was in a wheelchair that had just taken her 3rd or 4th infusion and somehow found the strength to hit the slopes and go skiing! i DO live in colorado after all, and skiing is a huge part of the CO life and culture.

i was informed that tysabri starts to really kick in around the sixth infusion (exactly where i am, right now). it didnt do much at first, but i started to notice that after the 4th, i was ddeclining fairly rapidly. i guess ill stick with it with fingers crossed...

anyway, blah, blah, blah.and helping out in whatever way i can... because, as all of you know, MS is a crusher, and even doctors and specialists do not know nearly as much about this wonderful disease as the people that actually have it and feel it...

coffee time! woo hoo!

hi all!

Hello Everyone,

I'm new to this site and I really do have a big question to ask anyone that would be willing to reply back to me. First let me say I have never been told that I have MS by any doctor I have seen in the last few years. I started having symtpoms of dizziness, pins and needles, crawling sensations and kind of nerve pain throughout my body for the last two - three years. Sometimes I seem hypersensitive to everything. In the last few months I started having burning sensations in my lower spine that radiated to the whole spine and crawling sensations and burning sensations everywhere in my body. I'm sometimes sensitve to warm water when i shower. I've had 3-4 MRI's in the last two years (two with constrast). All were negative and normal. I've had two EMG's in 2004 and 2008 which were normal, I have tons of blood work to rule out other diseases. I have a test where they stick you with needles to test your muscles. I am very anemic and I take Iron twice a day with B-12. I feel dizzy almost everyday. This year I had MRI brain, MRI C-Spine, and another EMG which were all normal. I'm still having most of the above symptoms but the doctors seem to think I must be experiencing some sort of anxiety or maybe a disease process will manifest eventually. It's been 5 years since the onset of these symtoms. I also experience some sort of vibrating symptoms in my lower stomach, pelvic area every now and then. Do my symptoms sound like MS to you? Please someone reply and tell me what you think? Sorry for this being so long, but I had a lot to say.

omons, welcome to the site & you will make lots of friends here to share the journey with. I hope the tysabri works for you too. You sound like you have a great attitude & that is a lot of the battle.
I often say "I may have ms but ms does not have me", lots of people say this & it is so true.

Hi Tanfel,
I think you will get a better response if you post your note as a new discussion. As for does your symptoms sound like ms, unfortunately ms mimics about 100 other diseases like Lyme disease & fibromyalgia & lots of others, so it is always a case of ruling out everything else first.

sorry pressed send before I meant to on last one. I hope you have a good neurologist doing & reading the tests as they are the specialists in these areas. Some of your symptoms could be ms but could also be a lot of other things. I know one lady who had "possible ms" recently found that she has early onset parkinsons & this is after many years.
Keep a diary of all your symptoms, how long they last, how they affect you, how severe etc. That will help the Dr's along with all the test results too.
Sometimes it can take about 5-10yrs to be dx with any disease as it takes time to rule out everything & show what course it is taking.
Take care of yourself