MS Discussion

[bobtokes]

I hear that mate lol half my life to ms, well over half this year lol.

that my friend is very well put

 

[tet1953]

Interesting article, I have passed it on to my gf who was diagnosed about 15 years ago.

I have to disagree with those who have characterized MS as a "slow death". While there is no cure currently, most people who have it will die with the disease but not from it..especially women. It affects men much more severely than women usually. There are also different types and stages of the disease. The range of symptoms and degree of of them varies a great deal from person to person.

My gf is relatively lucky; she's 45, diagnosed about 15 years ago. She still walks, drives etc. She has episodes, or exacerbations, sometimes a couple times/year..especially spring and fall. But man..all the different symptoms that have come and gone over the years..incredible.

 

[mr west]

trouble in the uk is if u are already on a treatment such as beta interferon they wont even entertain changing it to try something else unless its not working.

 

[tet1953]

Turns out my gf already knew about this. I finally got around to watching the video.. I only read the story before. So, if I understand correctly in the study there was 100% success, unless the vessels reconstricted. Wow.

We have a friend with MS, fairly young female, who has worse symptoms than my gf. She is in a wheelchair now (I have seen her walk, but not for several years). Anyway, she had to move away to another state. Apparently she is going to be part of this doctor's next study, in Albany I think. She will be having the surgery.

If this pans out the phamaceutical companies will go beserk fighting it. Those interferon drugs cost 1000s/month.

 

[Carne Seca]

My sister-in-law has MS. I am going to tell her about this asap. Thanks for the information. This is wonderful news.

 

[bobtokes]

had the ccsvi op just over 2 months ago and any improvements i noticed have gone, now i'm back to staggering around

 

[tet1953]

That is interesting. Someone that both me and my gf know moved to another state a couple years ago. They still keep in touch all the time though. Anyway, that person had the op and reported immediate improvement in her PT. Shortly later, she reported at least some loss of that improvement.

 

[mr west]

so what ya saying is it dont work? or for a limited time only. What a bummer I bet a lot of ppl were holding out for that to rescue them.

 

[bobtokes]

so what ya saying is it dont work? or for a limited time only. What a bummer I bet a lot of ppl were holding out for that to rescue them.

hi mate, it doesn't look too good for me, i've got to go back to have a scan in october to see if the 2 jugular vains have constricted again,on a good note if they have constricted again then i suppose there is hope, the only trouble is at the moment the stents they use are for arterys which can cause irreparable damage to the vane,
a chap at the therapy centre where i have oxygen treatment has just had the op and he says he feels great, he stopped having oxygen treatment and going to the gym, it will be interesting to see how hes doing in a month or 2

 

[Winter Woman]

I'm so sorry it stopped working for you. My hubby's friend has MS and is using some experimental drug and it is keeping it under control.

We live in Detroit where Dr. Haake is from if it get worse he will check him out. I'll let you know what happens with him.

 

[bobtokes]

i've heard of Haake theres a Dr dake as well, when your hubbys mate starts going down hill it is worth looking into, hes got nothing to lose,alot of people have said it has worked for them looks like i'm an unlucky one