Not MSer, but wondering...

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

Not MSer, but wondering...

Postby shorty » Mon Sep 14, 2009 12:01 pm

Hi, there,

My brother has RR MS. I have many symptoms (the usual: tingling, numbness, loss of strength and balance, cognitive issues) but I don't show any lesions. He has been diagnosed with celiac disease (as has 1/2 of our family) and I surely have it but stopped eating gluten so long ago and am so sensitive to it I can't get the blood test to confirm if I have the antibodies.

Since the neuro insists I don't have MS, I've always wondered if my problem is vascular. Most of my issues are numbness, though I do have some burning. It's also worse on the right side, but sometimes will suddenly shift to the left (this is so weird and no one believes me). My feet and hands go to sleep all the time.

I have very low blood pressure, it was even worse when I was pregnant. I'm on the high-end of normal for cholesterol. My brother's cholesterol is actually on the low-end of high, last time I asked. Not sure about about his BP.

And can anyone help me understand the issue of iron deposits? I'm always anemic and take a lot of B/Iron supplements, at least when I remember to.

Since I'm not an official MSer I always feel like I'm crashing the party, but know that I'm doing this research for my brother, too.
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Postby Jamie » Mon Sep 14, 2009 7:01 pm

Shorty,

There is someone on here who's daughter was showing early MS symptoms and was found to have blockages.

I'm sure Dr.Dake would test you should you wish, that would be good to get it before it even starts.

There could of course be lots of other reasons for your symptoms though and a lot easier solutions.

Good luck.

Jamie
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Postby shorty » Wed Sep 16, 2009 10:36 am

Thanks, Jamie. Yeah, there could be easier solutions. Just have to get a diagnosis and that's the rub! No one seems to be interested in figuring that out. Not to take away from my brother's issues but I get frustrated because our level of disability is about the same, you just can't see it on an MRI. Even my family doesn't really acknowledge my issues (except my husband, he's great).

Anyway, I'll talk this over with my FNP and see if he can make a referral. There's a teaching hospital here and maybe they're getting into this.
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Postby Jamie » Thu Sep 17, 2009 11:22 am

No MRI activity doesn't mean no MS.

If you're PPO you don't need a referral to Dake.

The incidence of CCVSI to MS is as close to 100% at the moment that if you got checked out and you didn't have obstructions you'd have a lot more peace of mind to start investigating other things.

And if you did, well best to get it as early as possible.
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