Possible CCSVI without MS diagnosis?

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

Possible CCSVI without MS diagnosis?

Postby Annbanan » Tue Jul 13, 2010 6:03 am

Well, the odd thing about my situation is this....for four years I have had fatigue issues (about once a month) and pain behind my right eye.....eye doctor said nothing was wrong. Went to my family doctor numerous times to be checked and last year I had two weeks of tingling and being off balance. I went to emergency because the tingling was from head to toe. They sent me home, I went back to my family doctor who told me it was all due to stress and gave me anti anxiety pills (which I didn't take because there is nothing wrong with my mind!). I finally asked the doctor to give me a referral to a private MRI clinic and paid $ 800 of my own money to do so because I felt something was srong. She tried to discourage me but I didn't give in. The MRI showed three white spots.....went to two neurologists and had a spinal tap that showed only one banding (they say they need two to make a diagnosis). They also said the spots on my brain are not really in the place where they usually see it in MS patients. So, after a year of going to emergencies, family doctor, neurologists, they have been unwilling/unable to diagnose me. I was upset at first because I wanted to get on some kind of drug asap to avoid deterioration, but the neurologist said he didn't want to put me on drugs until I deteriorated! I have to go back in a year for a repeat MRI to see if there is any change. If there is they can then diagnose me.
I have changed family doctors after she advised me to go see a psychologist. This was after I asked to be tested or Lyme disease, Lupus, and adrenal gland issues. My new doctor is quite eager because she is young and she did not hesitate to give me a requisition for CCSVI testing in Toronto.

So, since I have not formally been disgnosed with MS, and if my CCSVI testing shows blockages, I will attempt to see a vascular surgeon in Canada as it is just a vascular issue! I noticed that when applying to go to Bulgaria they ask about date of diagnosis with MS etc...I guess in that situation I can fib?

Any comments on this???? and is anyone else in a similar situation :roll:
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Postby TMrox » Tue Jul 13, 2010 6:37 am

Lyme's is very tricky to diagnose. There is a very large margin error for false negatives. Others here will have more to comment on that.

Have your doctors considered clinically isolated syndrome (CIS)?

I do not have MS yet I was diagnosed with CCSVI and I was treated for it.

I have Transverse Myelitis, only one lesion c3-c5. No positive cerebrospinal fluid (no o-blands nor elevated IgG index), no brain lesions, no family history of MS, born and grew up near the equator, so according to my neuros in stats terms I have a very small risk to evolve to MS (they don't consider CCSVI yet as a risk factor).

Here you can see how my condition was before and after being treated for CCSVI:

http://tinyurl.com/tmrox
Last edited by TMrox on Sun Jul 25, 2010 8:12 am, edited 1 time in total.
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Postby Annbanan » Tue Jul 13, 2010 6:55 am

Thanks TMrox. The neurologist did mention CIS at our first appt. But he didn't mention it again in subsequent appts. Is CIS still MS in the very early stages?
I am pretty sure I have MS as my loads of research as well as the results of the MRI/spinal tap would suggest that. I am just hoping that the CCSVI test shows a blockage so I can spend tons of money I don't have to go to eastern europe to get them unblocked.....I believe that my CCSVI test will show a blockage due to the sound the machine was making/not making during the test and my recent neck and shoulder tightness....

my co-workers are actually making fun of me at this point. I look fine and seem healthy and they think I am dwelling too much on health. One fellow said I must be rich to waste money going around testing myself for stuff.....it upsets me because these comments are coming from healthy people.....I do not want to be disabled in 5 years and if I can stop this in the early stages I'm all for it !

This site is so nice because no one thinks I'm nuts!

:D
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Postby Kathyj08 » Tue Jul 13, 2010 7:08 am

I am in Bulgaria now being treated just 3 days ago. Go to the thread I created called "InBulgaria now, stenosis found"!
I am in the same boat. Over 30 years of just a few flare-ups and did not get a diagnosis so therefore did not qualify for studies and such. Prof. Grozdinski said to go ahead and come and we could explore together. I had severe stenosis. Read the thread and ask me any questions you would like.
Good luck.
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Postby TMrox » Tue Jul 13, 2010 7:48 am

Many private health insurance are paying for the CCSVI treatment. So you dont' have to be rich to get tested and treated.

Parallel to your CCSVI diagnosis you need a good team of neuros that can identify what is the source of your neuro problem. There are far many diseases that can mimick TM or MS such as neurosarcoidosis, Lyme's, lupus, even gluten allergy.

Unfortunately once you have a weird condition that docs cannot identify you will have to do lots of tests. All of them worthwhile if that can tell you what exactly you have and how to treat you.


Best of luck,
Rox
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Thanks Kathyj08 and TMrox!

Postby Annbanan » Fri Jul 23, 2010 10:46 am

Appreciate your comments. I have decided to go ahead and have added myself the the witing lists in Bulgaria and Poland...if I don't do this I may regreat it in 5 years :roll:

Would be interested in hearing how you are doing kathyj08, and over the years what kind of symptoms did you have and what did all the tests show?

Thanks
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Thanks Kathyj08 and TMrox!

Postby Annbanan » Fri Jul 23, 2010 10:46 am

Appreciate your comments. I have decided to go ahead and have added myself the the witing lists in Bulgaria and Poland...if I don't do this I may regreat it in 5 years :roll:

Would be interested in hearing how you are doing kathyj08, and over the years what kind of symptoms did you have and what did all the tests show?

Thanks
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Postby Kathyj08 » Sun Jul 25, 2010 8:15 am

Annbanan,
Check your pm box.
Kathy
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Postby 1eye » Sun Jul 25, 2010 12:07 pm

I think I was kept in the not-knowing, might-be-a-hypochondriac category for a long time while they ran (and billed for) every test they could imagine, until finally a neurologist ran an MRI. It was not the first I had had. The first one I had was done by another neurologist, five years or so previous, but it didn't show MS because it was *of* *my* *neck* (not interested in veins).

Try to avoid the diagnostic merry-go-round if you can. CCSVI can be found by Doppler ultrasound, but you might want to add the Haacke protocol, and do an MRV as well. Plus the gold standard, catheter-venography, which can be concurrent with treatment.

Don't worry about fibbing to the docs in Bulgaria or Poland. They will not look into your veins unless they suspect something. If it's bad enough to have a stent put in, you may have saved yourself a lifetime of trouble. If not, they might still need balloons. And they will be honest and tell you if there's nothing needs fixing. Hope if there is, they fix it all.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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