NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   New Member Introductions (https://www.neurotalk.org/new-member-introductions/)
-   -   Just joined - great community (https://www.neurotalk.org/new-member-introductions/113607-joined-community.html)

dwarden 02-02-2010 01:21 AM

Just joined - great community
 
Hi,

I'm Dave - dx June of 2008 with Multiple Sclerosis after having Optic Neuritis and almost going blind in right eye. I have foot drop and limited response and range of motion in my right extremities. Just got married on 10/31/09.

Been on Copaxone since March of 2009. Ive been to 2 different local Neuro's, NIH (National Institute of Health), and going to the Mellon Center at the Cleveland Clinic on 2/4/2010.

I'm in the "insurance process" of 3 denials and then an outside review board before I can get a WalkAide to improve my quality of life. If it gets denied the 4th time - I have to pay $5,000+ for it. I guess the insurance company would rather see me break my neck, hip or something else before they pay...

I've created an iPhone and iPod touch app to assist with my injection rotation tracking as well as all the other meds I take. I can't write so well if at all anymore. I am becoming left handed! My goal was to help others in a similar situation.

I have met many people who are far worse off than I (for now), so I can say I am thankful for knowing I am not alone going thru this.
I wish everyone the best success in their treatments.

Thanks for creating a great community!

Regards,
Dave

soxmom 02-02-2010 09:09 AM

Hello and welcome Dave!:)

We have an AMAZING ms forum here at NeuroTalk.:) YOu will find
everyone helpful and supportive. So jump right in whenever you are ready!

Belsadie 02-02-2010 10:41 AM

new to forum
 
Hi to all. I am diagnosed with SPMS since 2004....ON MY BIRTHDAY..oh happy day! Since then, I've enrolled in the "hyc" clinical trials at Stony Brook on LI ,NY. I am convinced that the disappearance of that terrible fatigue is do to that regimen. It was tough!!!. I think they calll it revimmune now but I didn't get the stem cell component [it wasn't part of the protocol then].
That aside, I am elated about the CCSVI theory now proposed. I as convinced there's something to this. Interestingly, my first symptoms were in my legs after varicose vein surgery, followed by a bout of Bells palsy {EBV!!!]and a previous bout of "Shingles" [Herpes Zoster], across my midriff .
I've registered to enroll in the U of B trials to test for venous malformations and am anxiously awaiting their response.I"ve also contacted the vascular surgeons and interventional radiologists in my area to find out if they're doing anything connected with this theory [no responses yet]. If not, I'm going to make some noise with my own GP and Neuro about getting tested on my own. We'll see....

(Broken Wings) 02-02-2010 12:48 PM

Quote:

Originally Posted by Belsadie (Post 617010)
Hi to all. I am diagnosed with SPMS since 2004....ON MY BIRTHDAY..oh happy day! Since then, I've enrolled in the "hyc" clinical trials at Stony Brook on LI ,NY. I am convinced that the disappearance of that terrible fatigue is do to that regimen. It was tough!!!. I think they calll it revimmune now but I didn't get the stem cell component [it wasn't part of the protocol then].
That aside, I am elated about the CCSVI theory now proposed. I as convinced there's something to this. Interestingly, my first symptoms were in my legs after varicose vein surgery, followed by a bout of Bells palsy {EBV!!!]and a previous bout of "Shingles" [Herpes Zoster], across my midriff .
I've registered to enroll in the U of B trials to test for venous malformations and am anxiously awaiting their response.I"ve also contacted the vascular surgeons and interventional radiologists in my area to find out if they're doing anything connected with this theory [no responses yet]. If not, I'm going to make some noise with my own GP and Neuro about getting tested on my own. We'll see....


Welcome to NT

You are trying the newest things. Keep us posted.

Hope you find relief.

(Broken Wings) 02-02-2010 12:50 PM

Welcome to NT

MS is no fun. You will find lots of support here.

You've probably found the MS forum but here's the link just in case.

http://neurotalk.psychcentral.com/forum17.html

We also have other forums here that are interesting too. Read down and see if you can find something that interests you.

Look for to having you around the board.

NurseNancy 02-02-2010 05:04 PM

hi dave,

i'm judy.
congratulations on your marriage.
i know you've found a great place for info and support.

looking forward to more of your posts.


All times are GMT -5. The time now is 07:35 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.