ccsvi

[billy441]

with research done and reading 30 40 years ago that in monkey brains theres something that closes off with low vit d in brain they had a simple test using hot tubs for die noise of ms ,we all know what heat dose swelling ect when looking into brain on onset or ppms theres no study's or trials doing a befor and after mri and takeing an ultrasound of deep cerebral veins and neck veins of being normal temp and raised temp over 99 like using hot tub, ele blanket, running temp,stress, lobor.how can they know how to do  these test, eye presser what clause melamine loss with out knowing this stuff

[billy441]

thank for all he comments

[billy441]

setting back waiting for something to work good for me and 20 mris 6 7 thousand dollars a month in meds and leaning this computer and joining  my msteam and spell check I with common since knows what heat dose  and yes I know were all different but its heat related there not seeing every bodys day to day . reading all these post the docs are just telling what drugs are supposes to  treat what ailing at the time  and what they have been told that slows ,i n my case I know well over 700,000.00 been spent due to looking in to a broken neck 20 years ago but most have story's and story's and nothing making it better,ill bet  I could pasafly you bing a doc just from reading all this stuff and the main thing I would do is make you feal like I was doing every thing and any thing.sorry getting pissed and worse

[billy441]

thats what scares me is what heat dose and is it making all worse, when i have a fever I have to take advil to bring tem down so  I can bend legs if out in the heat I end up crawling into ac then I go again, at onset I had hot tub  and in nude tem was 105 when I go out all I could do was to walk in circle tell I fell , no more hot tub I think in women its the stress swelling I could go on and on what heat dose and I guess putting us in hot tubs  ,how much could they charge

[Sailorsong]

Billy,

  I am also PPMS and my Neuro has me on CellCept (immune system suppressant) Don't know if it is really helping slow down the progression, but at least I feel like my Neuro is trying to do something to keep things at bay until a real treatment for PPMS comes out.

Dennis

[Sailorsong]

I have heard that the reason they no longer do the hot tub test is because it can throw a person into a relapse and cause permanent damage.  

Dennis

[immisceo]

Hi Billy!

I notice this is your first post on the forum. It's a great group we have here, including some with PPMS like yourself.

Some of us here take part in research ourselves, but we all know that PPMS research is running frustratingly behind RRMS research. Luckily, because MS is general is a really active area of research, some researchers are shifting focus to address the RRMS-PPMS "research gap".