Going to start and sperate ccsvi and MS

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Going to start and sperate ccsvi and MS

Postby Villagemaid » Mon Jun 14, 2010 9:27 pm

I am NOW going to explain to people that I have more than one disease.

I have Multiple Sclerosis. I have Asthma. I have hyperthyroidism. I have Venous Insufficiency.

For MS I have treatment (if I wanted, the injections)
For Asthma I have treatment (a steroid ventilator)
For Hyperthyroidism I have treatment (biopsy and possible thyroidectomy)

For Venous Insufficiency I have NOTHING.


I go to my GP and explain my symptoms. It "sounds" like Thyroid. I get blood tests, and an ultrasound BASED ON MY SYMPTOMS ALONE (seperate from the MS). The ultrasound shows nodules so I am sent for a BIOPSY which will lead to treatment (wether surgical or medicational).

How come when I go to my GP with ACTUAL TESTS THAT ARE RECOGNIZED (an MRV and Ultrasound) that shows VENOUS INSUFFICIENCY why am I not immedieatly reffered to a VASCULAR SURGEON for treatment (wether surgery or not)

35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby vendredi5h » Tue Jun 15, 2010 5:45 am

Villagemaid, I share your frustration. You've got proven veinous insufficiency. There exists a very safe treatment for that. You cannot get it. You have to stay with veinous problem with possibly important consequences. It's criminal. Nothing less.

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Postby belsadie » Wed Jun 16, 2010 6:27 am

Perhaps. you should contact a malpractice lawyer...A letter from him/her would certainly get some attention....Just a letter, first and see what happens, then!
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Postby costumenastional » Wed Jun 16, 2010 6:45 am

Simply because "they" say that having occluded or even absent veins may be totally normal. You know, like being on heavy chemo without ANY benefits. That kind of normal...
And they have a point i should say. I mean, if I was a doctor i would probably not go with this right from the start. Quite a lot to loose, way less to gain. On the other hand, if i had a child suffering from MS i would jumb all over the only damn chance to stop this notorious disease. Dr Hubbard did... and he is a neurologist. It all makes sense no?
Trying to stop CCSVI research is another issue though, one we have already spoke our minds of in thisisms.
Until further research gives us the proof we need, take things in your own hands. Fortunately, there is a way ;)
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Postby Nunzio » Wed Jun 16, 2010 7:16 am

I think I got it now: you meant to say
" I am going to start and separate MS from CCSVI.
Sperate means to hope for, from latin derivation sperare= to hope.
Anyway I agree with the concept. For instance fatigue syndrome is strictly a CCSVI problem and that should be a reason to be treated for vein narrowing on itself.
Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />
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