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HiCy PPMS Trial

At my appointment with Dr. Kerr last Sept he mentioned that he would be starting a trial of HiCy with a few PPMS patients and he said that he would have some preliminary results in about six months.

I emailed him in Feb to inquire about the status of the trial and he responded that it would be about another four months before he had any data.

I have tried to email him several times ...
Read more : HiCy PPMS Trial | Views : 4253 | Replies : 2 | Forum : Revimmune (cyclophosphamide or cytoxan)

I started a blog

Well I'm finally a blogger! I started it since I have so many wonderful friends and family who just don't know how to do internet forums and they all want to stay current with how this works out. And since I'm windier than a bag of buttholes, it will give me a place to release some of my writing angst :lol: . The address is here: ...
Read more : I started a blog | Views : 15210 | Replies : 118 | Forum : Chronic Cerebrospinal Venous Insufficiency (CCSVI)

only 5 years old ...

Wouldn’t someone one this young getting ms challenge some of the theories we have about ms?
-why did her plasticity only allow her to get to age 5 before the ms became noticeable?
-is she vitamin deficient?
-does she have blocked jugulars?
-could she have a virus that antibiotics could fix?
-could sleeping at a different angle help her?

-what could be the reason that someone ...
Read more : only 5 years old | Views : 1602 | Replies : 3 | Forum : General Discussion

You never know

Last Tuesday I was over an hour from home for a work meeting when I rec'd a call from my daughter that she was heading to the hospital. She is over 6 months along in pregnancy and had been having pain in the groin. She awoke that day to a swollen leg, purple in color- worse after doing the steps. Blood clot. From her groin to her ankle. Spent Tues- Sat in the hospital in ...
Read more : You never know | Views : 2329 | Replies : 12 | Forum : Daily Life

Mel & Jamie's ongoing Stanford experience post!

Does exactly what it says on the tin.

We head off early tomorrow morning, arrive at Stanford lunch time and have the scans in the afternoon.

We'll hopefully meet with Dr. Dake after that and IF (!) stenosis is found she'll be treated the next day.

I'm taking my computer so I can keep up with work so I'll keep everyone posted as to our progress.

Wish her luck!

Dizzy spells

Hi everyone,

So the last 2 weeks i've been experiencing random dizzy spells. Like it just sweeps over me, lasts about a minute then goes away. It's not every day... and i'm always sitting when it happens.

I've never had this before... has anyone else experienced something similar?

I'm about to head to Europe for my vacation and the last thing i need is a new symptom.

Hope you're all keepin' cool!

Read more : Dizzy spells | Views : 3437 | Replies : 8 | Forum : General Discussion

KISS 4 me

This post has nothing to do with EBV.

Ever since being diagnosed ten years ago, I've thought there has to be a simple explanation for MS. MS and many other diseases, in my opinion, start because of a basic problem.

I think too often, scientists can't see the forest for the trees...or do not want to see the forest. Everything is overcomplicated. IMO, CCSVI, fits the KISS method. KISS = keep it simple stupid. I ...
Read more : KISS 4 me | Views : 2204 | Replies : 6 | Forum : Chronic Cerebrospinal Venous Insufficiency (CCSVI)

Dr Wheldon's clinic

Hi there
I have RRMS but I'm new to this antibiotic thing. Does anyone know whether Dr Wheldon sees private MS patients and if so how can i find him - I've drawn a blank on the internet so far.
Read more : Dr Wheldon's clinic | Views : 2976 | Replies : 4 | Forum : Antibiotics

CCSVI and new research on "myelin stall out"

ScienceDaily (July 1, 2009) — Scientists have uncovered new evidence suggesting that damage to nerve cells in people with multiple sclerosis accumulates because the body's natural mechanism for repair of the nerve coating called "myelin" stalls out.

The study, published July 1, 2009, in the print edition of Genes & Development, was conducted by scientists at the University of California, San Francisco and University of Cambridge. The research was led by co-senior investigator David Rowitch, ...


I'm wondering what people think about any connection with CCSVI? I've noticed that several of us on the site have referenced having discoloration and/or Raynaud's. It's something I intend to speak with Dr. Dake about, but it would be great to hear if others have these issues in their hands and feet and what might be going on.
Read more : Discoloration/Raynaud's | Views : 2361 | Replies : 14 | Forum : Chronic Cerebrospinal Venous Insufficiency (CCSVI)


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