This Is MS Multiple Sclerosis Community: Knowledge & Support

hmm so you have ms for sure... did they look at you azygous?

Back from the hospital.

CCSVI not found. Will go home and re-test for Lyme.

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Before I go on describing the experience of others I want to mention a few things that were not clear to me after reading everybody's experience (or maybe I just skipped over it looking for IMPROVEMENTS):

The procedure IS invasive. You feel the catheter going in, the dye being injected, the balloon being inflated

According to some - ballooning hurts and stenting hurts some more

You are sore after the procedure. Men in our group either don't complain much or are simply not as sensitive. Women - whether having had the liberation or simply venography are VERY and uncomfortably sore

Being stuck in bed for approximately 18 hours - no leg bending, no moving side-to-side, bedpan and all is VERY testing and somewhat humiliating. You are made to drink approximately 5 glasses of water after the procedure.

I feel worse than ever after the procedure (I know this is temporary) - veins might have been scratched, valves disturbed, the dye is toxic, etc.,

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Others:

* We did not have anybody with immediate stark improvements. Slight immediate - yes.

--- One more lady in our group did not have CCSVI. She was never given a proper MS diagnosis (no brain / spinal MRI, the spinal tap result was lost by the lab). She is in a wheelchair and has common MS symptoms - foot drop, leg drag, fatigue, balance problems and the "usual" bodily functions problems

--- One gentlemen with SPMS had a rather significant stenosis in his left jugular - was ballooned. He is trying to shake off the after-procedure soreness to see the improvements. His major symptoms were tremors, lack of balance, lack of coordination and brain fog.
He feels slightly better on all accounts

--- Another gentlemen (I think he has RRMS) also had a ballooning only. He saw immediate improvement in his blood pressure. His major symptoms were mental fatigue and yes, the higher than normal blood pressure.

--- Finaly, one lady in our group (PPMS) received the ballooning in one of the jugulars and stent in another. The stenosis on the side of the stent was said to be very long and did not hold after the several attempts of the ballooning. She saw blood pressure improvements (from too high to more close to normal) AND for the first time in her life she felt a little sweat on her neck . Her symptoms are also foot drop, leg drag, fatigue, balance problems and the "usual" bodily functions problems.

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I am still glad I did it (even though very disappointed) - I ruled out something that would have been a "what if?" for the rest of my life.

I want to hear more aobut your experience comfortably numb ( i like that name)..so you got a negative from Simka? Not many of tos available when you're batting 95%...

I do not know where these testimonials you quote are coming from...?

I cnt help thinking that you should get a 2nd opinion from simka ndwannabe.

Dont know how that would work but that's how I'll handle it if this happens. Send my wife home and stay for that second. There are some cancellations happening at the end of june.

Before continuing with speculations, I hope you don't mind if I ask Erika by private msg a bit her view on this - I think she knows Kosteki - did she not have her doppler with Kosteki and Simka together, and they cooperate? Or was that another doctor?