This Is MS Multiple Sclerosis Community: Knowledge & Support

Chris, is this the same group at JH that did your treatment?

Its only a small group of 9 MS patients with aggressive MS followed for up to 24 month. But a 39% average improvemt in EDSS sounds promising.
Trial results

--Frank

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Treatment: CCSVI both IJV ballooned 09/2010, No DMDs, Tysabri on hold after 24 Infusions, after LDN, ABX Wheldon Regime for 1 year.

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Wow, this should be THE document that people read from now on.

It's fantastically informative.

I'm CONVINCED Mel's follow up with Copaxone will equal a cure.

What would be awesome would be a genetic test that was routine, standard, and if found positive could be prevented with an oral type Copaxone.

I genuinely don't believe this is very far away.

Dr. Chrishnan was my first contact at JH. This is the initial study of the protocol. I have to say that the results are not that terrific. I am sure this is where the 50% relapse rate that Carrie is quoting is coming from. After going through this I have mixed feeling about the procedure. It holds a lot of hope for some people but you can not hang your hat on this as the ultimate cure. It may work but it may not. Everyone is going to be different. At 8 1/2 months my results are mixed. I am worse off but it will not show up on my EDSS. My youth and physical ability are making up for the problems. I am being told that some of the problems I am know experiencing are temporary but they also could be related to axon death which is not a good prognosis and means these could be permanent problems. Only time will tell. I would still do this again because what I was doing was not working either. We will see what they say next week. With so few of us going through this I am not sure if the answer they will have will be from experience of just theory. Only time will really tell.

HiCy

I too have had a weird summer. The last month I had some twitchy issues but all my issues seem to be heat related. If I cool down or take a rest I feel a lot better.

I EDSS wise have improved already. If it wasn't for this damn knee I would be walking regularly as a part of my workout. If my brace gets here this week I will start that day. I'm somewhat optomistic I got this before the axonal death kicked in.

Well tomorrow I have the MRI and I will be home with a copy tomorrow. I'll know if there is anything knew and next Wed is my 3 month follow up.

I agree 100% with Brett. Would not even consider anything else.

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I got a theory about that before he even answers.

Summer sucks bad and for someone who has never had any issues with fatigue or other things many of us experience, it may be just getting it's last gasp.

Also, Dr. Kerr did say it takes some folk 4 years. I am tending to believe it will take me as long to get anything back as it did to loose it. It is sooooooo slooooooow. Some days still do suck for me. I have nerve damage.

I also think with the body under attack it puts up a certain defense of not letting you in on it all. This is my point....

I have a appt on the 24th w/ a neuro for Carpel Tunnel Syndrome. I did not have it until April. I started to get the feeling back in my body parts I had lost and unfortunately I could now feel the Carpel Tunnel!!

Getting better sucks in ways, but so far all my issues have been correcting themselves with a medical answer or rehab.

2/9 relapsing only one with clinical symptoms doesn't equal 50%.

No new symptoms just a worsening of old ones and since these are worse I have not improved like I had hoped. It is hard to explain. It has been a slow regression starting back in December with the worse of it happening around the 1st of April. Things seemed to have leveled off. The heat sucks but that has been that way for a while. We will see what Dr. Kerr says next week. I have already talked to him about this and I would like to believe his reasoning. I would like to see if he has data to back up his theories or are they really just that, Theories.

HiCy

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I was the second person they put on Copaxone which I started back in December. I have discussed this with my Neuro and they admit it makes perfect sense to do this. Train the immune system while it is still new and learning and we can all be like the test mice who did not develop MS after they were given copaxone.

HiCy

I thought that article was fascinating but it did reaffirm one thing for me more than ever...

I HATE MS.

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