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Where to go from here ?

I have been a quiet observer of this forum for a while and have found it very helpful. Thank you all for your insights. My wife was diagnosed six years ago, and has tried all of the ABC's - no luck. She has progressed pretty rapidly. We began Tysabri three months ago. Her strenght seems to be improving, however I am noticing some very disturbing things. She is having a very hard time concentrating, she ...
Read more : Where to go from here ? | Views : 2120 | Replies : 7 | Forum : Tysabri (Antegren or Natalizumab)


white count 730 and rising

So my white count never got down to zero - but only to 110. My neutrophils did hit ZERO and stay there for 2 days. They are now at 29, while my wbc is 730. I'm on my way up..... successfully rebooting!

No complications as of yet, either.

Today was Day 3 of the growth hormone shots.

Thanks for all of your well wishes,

~Keri
Read more : white count 730 and rising | Views : 1989 | Replies : 2 | Forum : Revimmune (cyclophosphamide or cytoxan)


This might be a dumb question, but ...

What about the role of water?

When I go to get my infusions they always have a hard time finding my veins. I know that I don't drink enough water (like, serioulsy, maybe 2-3 glasses per week) , but now I'm starting to wonder just how poor of a choice that has been.

No water + heat +stenosis = ????? (yikes!)

On that note, I'm going to go get a glass of pure H20 right ...


Random Thoughts

***Apparently my family (parents/siblings) thinks MS is something like the flu or a bad kidney infection. They were lovingly by my side in January when everything went down and I got the dx but since mid-Feb., the subject hasn't come up. I avoid mentioning it because it just sounds whiny but I would like to talk about it sometimes with them. It's as if nothing in the family has changed...but in my life, it seems ...
Read more : Random Thoughts | Views : 1991 | Replies : 9 | Forum : Daily Life


Hi from Jeff, re. my stent treatment at Stanford

Hi everybody! This is Jeff (aka 'Cheerleaders husband'). Yes, I'm actually NOT a fiction of my wonderful wife, but a real person. I'm happy to share with you my experience at Stanford for whatever help and information it might bring to light. Those of you familiar with this thread probably already know about the work Dr. Zamboni has been exploring with our disease and this completely new model of a possible cause, and treatment for ...


another one for Stanford, and a question

Hi All -

I've got an appointment with Dr. Dake starting July 14th. As so many have said, he and Angela could not be nicer. I will eagerly read about those who go first, and will happily post during my time there.

Now that I have booked it, I started wondering about the implications for my using Copaxone. I will need to discuss it all with my neuro, but I am wondering if anyone who ...


vasoconstrictors, vasodilators

(I started a discussion about this in the Remission thread, but thought it probably warrants its own thread.)

Assuming there is some truth to the CCSVI paradigm, our brains and spinal cords are damaged when veins narrow down enough to create backflow/pressure.

While much of the stenoses (narrowing/blockages) are likely to be present from birth, it does seem likely that various things can make the problem worse and bring on relapses.

I don't expect to ...
Read more : vasoconstrictors, vasodilators | Views : 8900 | Replies : 12 | Forum : Chronic Cerebrospinal Venous Insufficiency (CCSVI)


Clinical trials 2009

Poor Dignan is living in some God foresaken part of Canada in a town with no attractive women and still under 12 foot of snow. To make things worse our football (soccer) team (Arsenal) had a bad end to the season so he's a bit depressed. To stop him spending all his time down the local bar / pole dancing club, I've found him something to keep him busy.



http://www.nationalmssociety.org/news/n ... ...
Read more : Clinical trials 2009 | Views : 2290 | Replies : 4 | Forum : Drug Pipeline


My Campath Story

WOW, what an interesting but very stressful journey to finally get to this point! The short version of the story is that I was a Tovaxin lab rat who received Tovaxin during the 1 year of the Phase IIb trial and then 4 out of 5 vaccinations in the extension phase before Opexa ran out of money and shut the study down. At that point it seemed like the obvious thing to do was enter ...
Read more : My Campath Story | Views : 3404 | Replies : 11 | Forum : Campath (Lemtrada, Alemtuzumab)


Trying to Get Referral for NYC

I just spoke with Angela from Dr. Dake's office, regarding any possible referral he might be able to give me for a doctor to reach out to in New York City. She said she knows that Dr. Dake does have contacts with people here in the Big Apple, and that he'll get back to me sometime either later today or tomorrow. She was extremely gracious and helpful...

As I've said before, I'm not completely convinced ...
Read more : Trying to Get Referral for NYC | Views : 3629 | Replies : 21 | Forum : Chronic Cerebrospinal Venous Insufficiency (CCSVI)


 

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