This Is MS Multiple Sclerosis Community: Knowledge & Support

I have not progressed worse.
I might not have gotten worse if I didn't do anything at all. I have had some kind of cold/virus/cough since receiving treatment. Being "sick" for so long has dappened my spirits and made it harder to focus on being "healthy" like pushing myself to walk or bike or even do daily chores. Also been hard to follow a good diet...just want to eat chicken soup out of a can.
Walking was very difficult and it isn't any better. (or worse) I suspect I was going "downhill" before Campath, so perhaps it stopped that progression. It seems I could give in to a wheelchair or scooter but since technically I can get around, I am trying to avoid that.

But Campath is one of the few that postulated some would actually reverse their symptoms. I think it has been very hard to push for that (i knew it wouldnt happen on it's own) because I have been sick for most of the time---My immune system is only 1/2 back to normal (evidenced by labwork) and it's 6 months till the next infusion. Catch me on those few odd weeks here and there where I am actually free of a runny nose & cough, and I might be able to recognize some positive aspects--it's just very hard to deal w/ both the walking MS everyday challenge & constant flu/cold symptoms!
That's definately affecting me psychologically.

I re-read David's story and know that if I could just get out and move I would see better results!
http://www.davidscampathstory.org/experience.html

Conversely, I read Craig's story (after I started posting on the stem cell subject) about his stem-cell experience & it sounds really scary and same infection problems!!!!!!! http://www.mult-sclerosis.org/craigsstory.html

I find it hard to understand why the doctors haven't hit hard on your infection?

I think I read on your blog that you have had antibiotics (only effective against bacteria), but I didn't read anything regarding anti-virals. Have you been given / offered / tried Tamiflu? and Amantadine? I have taken these to kick a virus big time. My trigger for a relapse is an infection, and most are viral, so the anti-virals are my first-line defence. They are not that common, but some doctors are more than prepared to prescribe them for people who have a flu in the general population, let alone some who has recently gone through an immune compromising treatment.

As for the getting about (once you kick the infection), I have personally have noticed that if "I can exercise it, I can improve it".

I actually got amantidine last week. My primary was pushing towards an allergy theory, but since antihistamines aren't working, you are probably right; I should try the amantidine (from my neuro). She said MS'ers use it for energy, too. I just wasn't sure if it was too late into the infection....
Thanks for the tip!

I think Tamiflu is stronger. I have scripts for both. I use Amantadine when I sneeze for no reason, and Tamiflu when I definitely have a cold/flu coming on.

And yep, both work best at the START of an infection. They interrupt the replication of the virus. But I am guessing it would help to some extent at nearly any stage.

I saw Dr Burt at Northwestern yesterday. He is the transplant Dr. He was very nice and did some explaining of the study. I also saw Dr Balabanov at Rush. He is one of the MS Neuro's at the MS center. He also was wonderful. They both did the usual tests, lift your foot, walk heel to toe etc. Dr Balabanov went on for the EDSS numbers. He said that he would have to look at my MRI I had done earlier Monday but that it was possible that I qualify. I was in that tube for the MRI for--an HOUR.. yep, started to freak out at the end, I can take alot but holy cow. She kept telling me I was moving, well I had my eyes closed and as we all know having MS and having your eyes closed we move. So ok that was the worst thing of the day and the traffic lol. I should know for sure if I quailify by Friday.