Hello there! Mel from Sydney, Australia

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Hello there! Mel from Sydney, Australia

Postby Melby » Wed Mar 30, 2011 8:58 pm

Hello everybody! My name is Melanie, and I'm from Sydney. I'm 39 years old, and a mother of 2 beautiful girls, aged 6 and 7.

I was given my MS diagnosis a week ago, after getting Optic Neuritis back in June last year. The MRI that I had at the time showed an active lesion on my Optic nerve. So far that has been my only symptom. The neuro had me do a VEP, which was normal in my left eye and abnormal in my right eye. That was no surprise because the ON was in my right eye. Then I had a spinal tap, and he found Oligoclonal Banding.

I was actually surprised that he went for a "definitely MS" diagnosis, rather than a "probably MS" diagnosis, since I don't meet the MacDonald criteria - but my neurologist and I don't get along, so I wonder if the chance to shove me off to a clinic was just a little too tempting hahaha

I guess I'm lucky in that my diagnosis was made from one relatively harmless symptom and some tests, because I know that some people go through years of mysterious symptoms before somebody finally connects the dots for them. To actually be told that I have MS was like being slapped in the face, but just like a slap in the face, the sting didn't really last that long - 9 months ago, when the connection between ON and MS was first explained to me, was when I really went through the grief and the "woe is me" of coming to terms of the possibility of having MS. Since then, I have done so much reading and research that I feel like I am as prepared as I can be for whatever lays ahead.

My biggest concern is my 2 girls. They are so little, and I just hope and pray that I can stay strong and mobile for their sake for as long as possible.

The next step for me is waiting to hear from the MS clinic that the neuro is sending me to. From there, I guess there may be more tests, and no doubt drugs. Until then, just waiting, and enjoying life - because that's what life is about, right?
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Melby
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your jugular veins are obstructed

Postby hwebb » Thu Mar 31, 2011 12:33 pm

Hi Mel,

you need to get your internal jugular veins tested for obstruction. Recent studies have indicated that blocked jugular veins cause many of the symptoms of MS - including those you describe. This is called Chronic CerebroSpinal Venous Insufficiency (CCSVI).

The following doctors in your area treat CCSVI:

Sydney

Prof. Lourens Bester
St Vincent’s Hospital
Ph: (02) 8382-2327

Newcastle:

Dr Paul Thibault - able to interpret and report on test results, provide referrals to Prof Bester.
41 Belford St, Broadmeadow
Ph: (02) 4961-6448

Please follow the latest updates on this area of treatment at :

http://www.facebook.com/CCSVIAUSTRALIA

and

http://www.ccsvi.org.au/
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Postby Melby » Thu Mar 31, 2011 2:08 pm

Hi there hwebb, thanks for your response. I saw this mentioned in some of the topics on the message boards here as I flicked through quickly yesterday.

Is it something that is widely recognised widely amongst neuros that treat MS? The reason that I'm curious about that is that I also have a neurological condition called Cluster Headache Syndrome, which is pretty rare and very much misunderstood, even amongst neurologists. My neuro (whose main interest is movement disorders) still doubts the diagnosis of the headache specialist and wants to believe I had 100+ migraines over a 7 week period, none of which were relieved by migraine abortives but which responded to the most effective cluster headache abortive known - oxygen therapy. So I know how stubborn neuros can be, and how funny they can be about trying new things!!

But thanks for the info, I'll be sure to read more about it!
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not accepted by neuros

Postby hwebb » Fri Apr 01, 2011 10:13 pm

no - this science is not generally accepted by neurologists....unless they are personally affected by it like Dr Hubbard:

http://www.hubbardfoundation.org/

Generally, neurologists are not vascualr specialists also. You'll need advice from a vascular specialist - such as an Interventional radiologist.

Hwebb
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