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Does anyone know anything about CCSVI venoplasty for PPMS?? Is it effective for this form of MS at all? ANY INFO WOULD BE APPRECIATED. THANKS.

Hi there...I think it's still very early in the research process to know. In Dr. Zamboni's research, he found more improvements in RRMS and SPMS than in PPMS. Dr. Sclafani has said the same...but the goal in PPMS might be just to stop the progression and it seems that CCSVI may be able to do that. Which is huge. More research needed. If you've looked into the risk/benefits of this and are looking for a doctor, read the "Treatment available in the US now!" thread, for info both on Dr. Siskin and a new doctor that mshusband is referring to who can do this treatment covered under insurance. Take care.

PPMS
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.

colmmc wrote:PPMS
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.

Sending you prayers and good thoughts, colmmc. My darling man was also placed in the PPMS "box". Because of CCSVI, he finally has hope, too.

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.

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.

I've read your blog, Mitch. I'm very interested in the perspective of someone with PPMS. It helps me to understand some of what my darling man is going through.

Thank you for your willingness to share your experience. I appreciate it very much.

Trish317
Thank you.

colmmc... We have two things in common, we are both PPMS, and we both will be in Poland at the same time. 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??? And still noone has been able to give me a decent answer. Neuro's obviously don't seem to know themselves, and yet we rely on their expertise to tag us as such.

HEY

.

By their symptoms we shall know them!

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.

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. He started to have migraines around age 19, broke is neck at age 27, went through four neck surgeries (started having symptoms after the first surgery) and received the PPMS diagnosis three years ago at age 55.

[quote="Trish317]
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.

It's the RPMS I don't get. Only 5% of the MS pop get it, and it makes no real sense at all. How the hell do you go about dealing with something so rare? Also, will CCSVI be identified in people who have this?
I have a feeling that not many RPMS peeps are out there who have had the procedure-please correct me if I am wrong!!!

EnjoyingTheRide wrote:[quote="Trish317]
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.

The items l list are only tendencies. Almost nobody fits the PPMS mold exactly.[/quote][/quote]
Thank you ETR... You have given me more knowledge than my neuro has. I thank you.

HEY