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Marie's Long Stanford story

I got home friday night at 10 pm after 15 hours of driving, three days after my Tuesday May 19 surgery. I would like to chronicle my experience here.

Previous to asking for assessment at Stanford I had gone to my local university and had gotten dopplers. There was some reflux on the vertebral veins but very mild. However it was enough for me to go to Stanford for more testsing...and the abnormality was enough ...
Read more : Marie's Long Stanford story | Views : 5208 | Replies : 26 | Forum : Chronic Cerebrospinal Venous Insufficiency (CCSVI)

occipital nerve block

I was a delighted recipient of an occipital nerve block on wednesday.
I have had a debilitating headache for 2 was actually my presenting sx in the ER that got me a CT, then MRI which ended up dx MS.
I realize now, that once someone dx a chronic disease, it everyone's nature to blame EVERYTHING on the dx.
In this case it was chronic rirritation of the Occipital nerve.. Oh had I known.. ...
Read more : occipital nerve block | Views : 1484 | Replies : 1 | Forum : General Discussion

3rd Infusion for me and feel better

I had my 3rd Tysabri infusion on Thursday. It all went well.

I have to share this with everyone. 3 months ago I was so depressed with Rebif. I was exhausted everyday. I could not imagine driving more than 30 miles at a time unless it was my DR appointment.

Now, I feel so much better, don't get me wrong I am still tired and have my regular muscle spasms, twitches, pins and needles, numbness, ...
Read more : 3rd Infusion for me and feel better | Views : 1973 | Replies : 0 | Forum : Tysabri (Antegren or Natalizumab)

Some cautions to note

This is a post to make people aware of the finer details of the possible concerns to do with this type of procedure. This is NOT a non event like going to the dentist: it is real surgery with real lifelong consequences.

Stents are a metal mesh with a matrix on them that the blood vessel cells can grow onto and cover. These are used in areas where the blood vessel is compressed enough that ...
Read more : Some cautions to note | Views : 4128 | Replies : 18 | Forum : Chronic Cerebrospinal Venous Insufficiency (CCSVI)

Lamotrigine trial results

Hi Guys,
yes, i have been quiet for a while but all has been well. In the same week that I received a blue badge (hurrah!) I also received a letter from the Consultant that was overseeing the Lamotrigine trial that I was on for 2 years and that finshed last Autumn. It turns out that I was in the 50% on the placebo, which is what I'd suspected all along. It was a double ...
Read more : Lamotrigine trial results | Views : 2501 | Replies : 4 | Forum : General Discussion


The more I learn and read, the more I start to see a common denominator; I think. Seems to me that some who develop MS later in life, that their siblings (brothers or sisters) end up with MS as well. Does anyone know of any studies? Percentages? It sickens me to think that my brother may one day have to put up with this. :(
Read more : Siblings? | Views : 1194 | Replies : 0 | Forum : General Discussion

bored and under the influence, lol

this is my son and he has some crazy moves :roll:

he did not get his dance moves from me!
Read more : bored and under the influence, lol | Views : 2075 | Replies : 7 | Forum : Daily Life

Copaxone and Cancer?

Someone very close to me was diagnosed with cancer and had previously been taking copaxone for two years. Nobody thought there was any connection. However, Teva seems very interested. Which is provoking this question. Has anyone else out there had a similar experience?
Read more : Copaxone and Cancer? | Views : 6484 | Replies : 7 | Forum : Copaxone

Spinal vs brain lesions?

Has there been any discussion on if CCSVI is more related to brain lesions than spinal lesions (or VV)? I have no brain lesions, only two C-spine lesions.
Read more : Spinal vs brain lesions? | Views : 2088 | Replies : 1 | Forum : Chronic Cerebrospinal Venous Insufficiency (CCSVI)


As I continue to hear of Cladribine's push towards approval, it occurred to me that I haven't really heard a lot of discussion here about it. Has anyone taken part in the trials? The data seems impressive to this point.
Read more : Cladribine | Views : 2203 | Replies : 3 | Forum : General Discussion


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