This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi everyone,

My dad had RRMS and it changed years later (20) to PPMS. He then died shortly after due to the severity of his PPMS and the infections he had. The doctor said that his body was full of infection when he died.
I have RRMS and 2 of my aunts also have ppms.

Definitely a family thing from what I am reading here. For it to change levels like that in a person they must be related. But, who am I to know. I am no scientist, just someone with a lot of interest in the disease and a problem solver by nature.

I am in a rush to get the procedure because I don't want my ms to change like my dad's did. I still have a lot of life to live.

Val

Am trying to "bump" this thread up a few notches....anyone out there who has had CCSVI diagnosis and/or treatment at the same time as a family member? If so, were the results of CCSVI similar - meaning same veins, etc.? Any and all posts appreciated!

There isn't MS in either side of my family, however on my father's side there is nothing but Cardiac disease, blocked arteries, have no idea about veins, but it wouldn't surprise me. Oh yes, there is circulatory problems on mother's side...

Wasn't it Sharon and her daughter who were both treated by Dr. Dake?

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Oh, CeCe - tell me more! Is Sharon on this board? The reason I'm especially interested is because I have PPMS and my daughter was dx in 2009 with RRMS. We are both on numerous loooooong lists for treatment......

yes, she's on the board...perhaps her ears are ringing? try a search or paging backwards to the summer...I tried a quick search but didnt' find the right threads...her daughter was not yet diagnosed with m.s. but had CCSVI. Very sorry to hear that both you and your daughter are affected, I hope you find your way to a front of a list as soon as possible.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

LR 1234

Please do start that thread--
and can you cite where I can find info on this excess protein and MSers? New info to me...thanks

i am sure MS is not just about CCSVI. there are a lot more factors involved. I imagine it like an MSer doesnt have 1 serious disease, but lets say 50 smaller. (of course the root is the bad draining of the brain)
Which means when there's a son and dad, even if they have the same kind of stenosis in their veins, their level of MS (=symptoms) could be different.
alex

I just want to mention, that before we went to Poland I was really concerned that my husband wouldn't be a good candidate for treatment because he was diagnosed with PPMS. At the clinic no one asked us what kind he had, it was never an issue.

Turns out he had a blocked left jugular vein, and the azygous vein was fine. We had read many times that it is usually the azygous vein that is the problem for those with PP. Another person treated who had RR shortly after us had a problem with his azygous vein and the jugular veins were fine.

Everything we read about PP vs. RR never came into play.
Any thoughts....

I have PPMS and have always thought it was a different manifestation of the same disease as RRMS. I have never understood why Secondary Progressive MS is different from Primary Progressive MS except that it starts after a period of RRMS. If, as I believe and seems to become more supported by data, MS is not really an autoimmune disease, but something else causes the demyelination of the brain tissue and then an inflamitory response is generated to "clean up" celular debris, and that looks like an immune activity and has been misinterpreted as the cause of the demyelination, it would seem to make sense that the initial demyelination from whatever cause is probably the disease, and the fact that some people remit and are diagnosed as RRMS and some people do not, and are thus diagnosed as PPMS or SPMS, it is probably the same disease.

The inflamation and remisssion may have more do do with the permiability of the BBB to the inflamatory cells in the blood stream, and whatever is causing the demlyelination (e.g. CCSVI!!) can exit without sufficient inflammatory activity to relapse and remit.

This is my logic, and not really supported by alot of data that I can think of. Does anyone know if the permiability of the BBB is different between PPMS and RRMS?

Dear newlywed4ever,

My daughter and I were just treated in Poland this past week. She had two stents in the right jugular and ballooning in the left. They wanted to stent the left, but it was too full of twists and turns. They had to balloon instead. I had ballooning in both jugular veins and in two places in the azygeous vein.

Best of luck to you and your daughter,
Katie41

Katie41, do you and your daughter have the same kind of MS?

I have PPMS and an uncle has PPMS. I haven't been CCSVI tested yet and nether my uncle. He has always said he had a problem with his neck as he was injured running into a clothes line as a child, and that was what he had not MS?
With the MRI's showing brain atrophy in progressive disease forms I wonder whether that has a connection to CCSVI and given that most stenosis/ blockages have up stream issues that collapse the veins. I am guessing that brain atrophy would have a link to vascular flows?

Newlywed the lists will move fast now as more people are starting to cancel their trips. I was supposed to be October but got moved to this month because I agreed to take a cancellation. I wish you all the best.

Hurray!!! Val, my thoughts and prayers are with you! Keep us posted...