Any people who have RPMS have CCSVI done?

Daisy3 · Post by **Daisy3** » Sun Jun 06, 2010 3:35 pm

I know it's rare but seeing as people log on to this site from all over the world I am hoping that some of you will be able to tell me that you have RPMS. I am interested in any CCSVI stories relating to this...please help!!

Everyone is talking about RRMS and PPMS and SPMS but no one ever mentions RPMS. It's the one were dealing with and even our neuros' had to think twice before diagnosing it.

Any stories/experiences with this particular subset of MS will be really helpful!! Thanks guys!

mshusband · Post by **mshusband** » Sun Jun 06, 2010 4:10 pm

In regards to my post in the PPMS thread ... couldn't RPMS just be the following scenario ...

Stenosis in the jugular veins (causing issues in the brain ... which relapse) ... stenosis in the azygous veins (causing issues in the spine ... which don't relapse).

But liberation shouldn't hurt in any case with either, any more than in any other type of MS.

CCSVI is the first theory that can explain these differences in any reasonable way ...

(I'm sure your neuro gave you a lot of we don't knows) but doesn't what I wrote above make more sense than that?

Daisy3 · Post by **Daisy3** » Sun Jun 06, 2010 4:15 pm

Your theory makes sense. The problem that we have is that MS does not make sense. Were going to go ahead and book an appt for this CCSVI thing-probably in Glasgow-but I am scared stiff that they will find no problems with anything.

It would be comforting-how weird is that-if other people with RPMS had some experience here..but its rarity makes that tough...

Thank you for giving me something to think on MS husband:-)

mmcc · Post by **mmcc** » Sun Jun 06, 2010 6:39 pm

I am relapsing progressive. I had the ultrasound which found problems in both jugulars and will have the procedure in about 2 weeks. My neuro expects the vascular surgeon will also find problems in the azygous when the venogram is done.

dlb · Post by **dlb** » Sun Jun 06, 2010 6:45 pm

mmcc wrote:My neuro expects the vascular surgeon will also find problems in the azygous when the venogram is done.

How refreshing! Sounds like you have a neuro that is onboard. Best wishes for your procedure - so nice you have support!

dlb · Post by **dlb** » Sun Jun 06, 2010 6:46 pm

doubled

Daisy3 · Post by **Daisy3** » Mon Jun 07, 2010 2:03 am

mmcc wrote:I am relapsing progressive. I had the ultrasound which found problems in both jugulars and will have the procedure in about 2 weeks. My neuro expects the vascular surgeon will also find problems in the azygous when the venogram is done.

So far then, I only know of two RPMS'ers: you and my hubby!!

May I ask what kind of symptoms you are having and the types of improvements you would like?
Please,please start a thread telling us when you are going for treatment and what happens afterwards. We will do it too, but it helps to know someone else who is in the same boat....

mmcc · Post by **mmcc** » Mon Jun 07, 2010 4:34 am

I have had MS since 1999 (age 46) no prior issues. It hit hard from the beginning. My major problems have been - muscle cramps, spasticity, muscle weakness, cognitive, and muscle "endurance". I have numbness, tingling, balance issues, nystagmus etc. I have never had optic neuritis or fatigue.

I use a scooter for distance and a rollator occasionally.

Over the years I have taken betaseron, copaxone, Novantrone, Tysabri, and zenepax, in addition to symptom drugs. The betaseron and copaxone did not help. The others not only helped, but especially the Novantrone and zenepax resulted in susbstantial improvements. In between the drugs that really worked - lots of IV steroids.

I was scheduled to have the procedure last week, but managed to get Lyme disease the weekend before and due to drug allergies, I have to take antibiotics via pic line for 10 days. When that is through, I will have the procedure a few days later.

Like you DH, relapses are not "spiky" like they are for most RRMSers. They tend to be more gradual - it usually takes about a week for me to be sure it is a relapse and not just something else.

But without the drugs that worked, a steep downhill slide resumes. When I was on Novantrone, I felt so much better I started swimming. By the time the lifetime limit on the Novantrone was reached I was swimming a mile a day (without using my legs that much). The day it wore off (yeah, I know that's normally what happens) I barely made one lap.

The Novantrone is the drug that did the most for me. Don't know if your hubby has tried it. It takes about 3 doses (6 months) to kick in, but it was incredible. At the point I started taking it, I couldn't even read the newspaper because the cognitive issues had gottens so bad that by the time I read the second sentence, I had forgotten the first. I couldn't think of everyday words, etc. Mobility was really bad. If there wasn't a lifetime limit on how long you can take it, I would still be taking it.

I have been on Zenepax until the company ran out of it last month. That is also a great drug. No side effects at all and it has worked very well. The downhill slide is starting, so I am really hoping for the procedure to work. I will be glad to post information as soon as I have the procedure.

My daughter had it 10 days ago and for the first time in 8 years she is actually improving !!!!!

I am having it done at Georgetown Univeristy Hospital in Washington, D.C. My neuro is one of the few doing it. I have been lucky to have him - he believes in agressive treatment.

mshusband · Post by **mshusband** » Mon Jun 07, 2010 5:32 am

MMCC - your daughter had the procedure at Georgetown and now you're having it at Georgetown?

Any report from her?

Daisy3 · Post by **Daisy3** » Mon Jun 07, 2010 5:44 am

mmcc wrote:I have had MS since 1999 (age 46) no prior issues. It hit hard from the beginning. My major problems have been - muscle cramps, spasticity, muscle weakness, cognitive, and muscle "endurance". I have numbness, tingling, balance issues, nystagmus etc. I have never had optic neuritis or fatigue.

I use a scooter for distance and a rollator occasionally.

Over the years I have taken betaseron, copaxone, Novantrone, Tysabri, and zenepax, in addition to symptom drugs. The betaseron and copaxone did not help. The others not only helped, but especially the Novantrone and zenepax resulted in susbstantial improvements. In between the drugs that really worked - lots of IV steroids.

I was scheduled to have the procedure last week, but managed to get Lyme disease the weekend before and due to drug allergies, I have to take antibiotics via pic line for 10 days. When that is through, I will have the procedure a few days later.

Like you DH, relapses are not "spiky" like they are for most RRMSers. They tend to be more gradual - it usually takes about a week for me to be sure it is a relapse and not just something else.

But without the drugs that worked, a steep downhill slide resumes. When I was on Novantrone, I felt so much better I started swimming. By the time the lifetime limit on the Novantrone was reached I was swimming a mile a day (without using my legs that much). The day it wore off (yeah, I know that's normally what happens) I barely made one lap.

The Novantrone is the drug that did the most for me. Don't know if your hubby has tried it. It takes about 3 doses (6 months) to kick in, but it was incredible. At the point I started taking it, I couldn't even read the newspaper because the cognitive issues had gottens so bad that by the time I read the second sentence, I had forgotten the first. I couldn't think of everyday words, etc. Mobility was really bad. If there wasn't a lifetime limit on how long you can take it, I would still be taking it.

I have been on Zenepax until the company ran out of it last month. That is also a great drug. No side effects at all and it has worked very well. The downhill slide is starting, so I am really hoping for the procedure to work. I will be glad to post information as soon as I have the procedure.

My daughter had it 10 days ago and for the first time in 8 years she is actually improving !!!!!

I am having it done at Georgetown Univeristy Hospital in Washington, D.C. My neuro is one of the few doing it. I have been lucky to have him - he believes in agressive treatment.

Novontron hey? We were thinking of trying Copaxone..
My hubby is newly diagnosed and were hoping that the CCSVI will help.

Let us know how you go:-)

Algis · Post by **Algis** » Mon Jun 07, 2010 5:54 am

It kicked hard to me too in 1998; and Novantrone (named Mitoxantrone here) kept me away from the wheelchair while I could take it - It has a limit number of treatments - after which your heart is in danger.

It really pushed my redline for a while and I am glad I chose to try it.

FWIW; everyone is different.

Cheers and be well, all!

IHateMS · Post by **IHateMS** » Mon Jun 07, 2010 8:52 am

i am rpms... dx in 1999 also at 35yo. male and in chair. i have tried avonex and rebif...... on copaxone since 2004..... did steroids once.... no other drugs... trying to talk an ir into testing me.

fogdweller · Post by **fogdweller** » Mon Jun 07, 2010 10:45 am

Algis wrote:It kicked hard to me too in 1998; and Novantrone (named Mitoxantrone here) kept me away from the wheelchair while I could take it - It has a limit number of treatments - after which your heart is in danger.

It really pushed my redline for a while and I am glad I chose to try it.

FWIW; everyone is different.

Cheers and be well, all!

Interesting. I have PPMS and was involved in a mitoxantrone clinical study for three years at UCSF. The result was negative...no effect whatsoever. Not just on me, but for the entire study. The effect on me was entirely negative, plus the drug is cardiotoxic, and the toxiicity is cumulative. You can only take the drug so long, and then the cardiotoxicity is a permanent contraindication.

They are adminsitering this drug? Were subsequent studies done that had positive results?

mmcc · Post by **mmcc** » Mon Jun 07, 2010 1:46 pm

mshusband wrote:MMCC - your daughter had the procedure at Georgetown and now you're having it at Georgetown?

Any report from her?

It has been 12 days and for the first time (8 years) she is actually improving. We ar very excited - no drug has helped her. Headaches are the most important symptom - debilitating and pretty much constant. This symptom is definitely improved. Her gait is better, fatigue is better, balance is better, and sensation is better. She is a long way from "fixed," but we are VERY excited and hopeful.

mmcc · Post by **mmcc** » Mon Jun 07, 2010 1:49 pm

fogdweller wrote:
Algis wrote:It kicked hard to me too in 1998; and Novantrone (named Mitoxantrone here) kept me away from the wheelchair while I could take it - It has a limit number of treatments - after which your heart is in danger.

It really pushed my redline for a while and I am glad I chose to try it.

FWIW; everyone is different.

Cheers and be well, all!
Interesting. I have PPMS and was involved in a mitoxantrone clinical study for three years at UCSF. The result was negative...no effect whatsoever. Not just on me, but for the entire study. The effect on me was entirely negative, plus the drug is cardiotoxic, and the toxiicity is cumulative. You can only take the drug so long, and then the cardiotoxicity is a permanent contraindication.

They are adminsitering this drug? Were subsequent studies done that had positive results?

You have to have a heart test before each dose, and of course there is the lifetime limit. I can truthfully say that for me it was worth the risk. I understand that the experience here is that for about 1/3 of people it doesn't help, for 1/3 it halts progression and the luckiest 1/3 improve.

Don't know how the results are for PPMS patients specifically, though. Maybe its like a lot of other drugs and doesn't help PPMSers.