Where to start? CCSVI

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

Where to start? CCSVI

Postby sewwhat » Tue Sep 15, 2009 7:12 pm

Hi All! New here
I was told by my neuro last week it's more than likely that I have MS.
Ok next step is the LP in a few weeks..But...

After reading through all the information on CCSVI I am sure there is something going on with my veins. I have pressure in my head that I cannot explain and I know something is just not right!

I want to get the needed tests but not sure where to start on all of this?? I am a little overwhelmed with all the information.

I have an appointment with a rheumatologist next week. I was told he is the doctor to go to to check veins/vasculitis?? Or should I go straight to a vascular surgeon? Or a cardiologist? Or just my GP?
(My insurance allows my to see a specialist w/o auth.)Nice, but it's not cheap.

I am in CA and will try to get an appt. with Dr. Dake sometime (I'm about 8-9 hrs away) Should I see a local doctor before trying to see Dr Dake so that I have some sort of test results to take with me?
Sorry if this has been covered. I have been searching and can't find the answer.
So glad to have found this site! Love reading the updates :)
Best of wishes to all
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Postby cheerleader » Tue Sep 15, 2009 7:49 pm

Welcome, sew...
First of all- deep breath. You're going thru alot right now, maybe you have MS, maybe something else. It's probably all a bit overwhelming.

You may have something else going on beside MS. Let the doctors test you and your blood, find out if you have vasculitis or lupus or Hughes Syndrome, etc. There are alot of differential diagnoses for MS. Then, if it is suggested, have the LP, see if it's MS. One thing at a time.

Stress isn't good for any disease! Trust that the docs know where to look, and then, if you get an MS diagnosis, you can discuss the veins aspect with your doctor and share your research. Maybe then you can see Dr. Dake...but first things first. Don't put the cart in front of the horse, as my Mom would say!

I wish you health and hope- keep us posted,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CureIous » Tue Sep 15, 2009 9:57 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:46 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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thanks :)

Postby sewwhat » Wed Sep 16, 2009 12:02 pm

cheerleader - Thanks and your right I am stressin'! There is just SO much to take in. I did have the MRI w/contrast and have many lesions.
I just did the needed blood work last week so haven't heard about the results yet. The LP is just being checked for approval w/ my insurance and they are suppose to get me in within the next couple weeks.

I agree I am putting the cart before the horse, I tend to go that direction.
Its just that after reading so much about MS and vasculitis I was really scared cause there is no cure and they are downright unpredictable! Which annoys me cause I like to plan lol (hate surprises!)
Anyway the procedure for CCSVI just made me cry cause I was thinking WOW there could be a surgery to alleviate this problem, but I will s.l.o.w. it down lol and take a breath and just see what happens with my LP.

CureIous- your statement "omg I got SOMETHING, whatever it is, NOW what do I DO?" describes me to a t lol and just trying to go a day without worrying is SO hard! Every little weird thing my body does well my mind races on what the heck is happening NOW! My doc did say he wants to get me started on the meds asap so that will be a whole other worry for me to deal as I get very nervous when starting/taking medications. But I guess I'll have to get over like everyone else. I am glad you are doing well w/o the medications :)
I have also started the BBD and my very lucky dog is now getting a long walk every night. I get kind of scared exercising at all thinking I need to save energy but I guess I am just a bunch a nerves right now and once the "newness" wears off I will settle down a bit.
Oh and we are pretty close I am in Anaheim - Looks like we are in for some more dreaded heat this week..ugh can't wait for the cool weather to stick! tc neighbor

Thank you guys for the replies and the wonderful welcome ((hugs))
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Postby CureIous » Wed Sep 16, 2009 12:49 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:45 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Sawdoggie » Wed Sep 16, 2009 12:53 pm

Sew-I am just a few months ahead of you in the whole "MS journey" thing as I had my first episode (at least very obvious one) in March and was diagnosed in April. It became very real when I saw the orders for the LP list MS as why I was having this done. Hell, I didn't even really know what MS was except something that Montel has and it was the reason a friend's Mom is in a wheelchair. prior to a large part of my body going numb and then Googling my symptoms. I feel good now as my symptoms went away by the time I was diagnosed after all the bloodwork, MRIs, and the LP but I still want to do something as everything points to early treatment as a key and who knows if I'll feel good tomorrow. An MS is annoying and obnoxious even without active symptoms due to the unknown. As for the meds, they put me on beta pretty quickly. Whether it works or not, it isn't a big deal to take the shots and at least it feels like I am doing something. I look at the beta as something I hope can keep things in check until something better comes along. So far CCSVI looks really promising which is a huge moral boost.
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