That's what they say I have. It's just another label that keeps us firmly in a box, that they have chosen for us .When questioned they, In my experience back away from anything that might be used against them if they where proved to be wrong.I have seen so many Dr's that when I go in I have a list of question's a strategy But always come out bamboozled ,confused and non the wiser.
I'm going to Poland this month with my " PPMS" So I will tell you straight what happens after that, And thats a promise.
Now I tell anyone that ask's I have MS due to CCSVI.
I sound quite angry, I think it's just the excitement/Hope, It's been a while.
EnjoyingTheRide wrote:I am PPMS, and have been liberated by Dr. Sclafani. For an accounting of my experience, please read these blog posts:
http://www.enjoyingtheride.com/search/l ... ment%20Log
I am drafting a "12 week update" for the blog, which I expect to post sometime in the next few days.
Did it work? It's complicated. I'm sorting that out as I write my next blog post.
Habenoughyet wrote: I also am confused about how they put us in that (PPMS) box. Aside from the fact that I don't get relapse/remissions, what other differences are involved???
EnjoyingTheRide wrote:Habenoughyet wrote: I also am confused about how they put us in that (PPMS) box. Aside from the fact that I don't get relapse/remissions, what other differences are involved???
There are several differences between RRMS and PPMS:
1. PPMS have no relapses, and no remissions
2. Disease activity in PPMS is not inflamatory in nature, thus it does not respond to anti-inflamatory treatments
3. PPMS tend to be older at time of diagnosis
4. Although most RRMS are women, the gender ratio with PPMS is about 50/50.
5. PPMS lesion load is more in the spine, whereas RRMS lesion load is in the brain.
6. PPMS level of disability is, on average, greater than that of someone diagnosed with RRMS
7. Walking difficulties are more common with PPMS. PPMS tend not to have so many sensory problems, or problems above the neck (vision, cognitive, etc).
8. And, last but not least, Zamboni found that PPMS tend to have more azygos vein involvement in their CCSVI than do RRMS patients.
To me, PPMS is almost a whole different animal. But I hope both animals are strongly related to CCSVI.
This is all so fascinating to me because my darling man has walking difficulties (completely numb feet) and cognitive issues. I'm not sure where his lesions are located. [/quote]
The items l list are only tendencies. Almost nobody fits the PPMS mold exactly.[/quote]
Users browsing this forum: No registered users