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

new here!

Postby MS_mama » Wed Nov 11, 2009 8:57 pm

Hi all,

I've been lurking excitedly for a while, and am just now delurking to introduce myself--my MS sx started suddenly a year ago (after my 2nd child's birth). I've had 4 relapses, two of them transverse myelitis since then, plus a host of random symptoms that come and go. Just diagnosed in June after the 3rd relapse. I'm on Copaxone and LDN.

I am young, in my twenties with a toddler and a baby and the CCSVI research has given me hope where none, as far as I was concerned, existed before. That may sound pessimistic, but I'd like to see a chronic disease that has actually been "cured" without a person being dependent on side-effect ridden meds for life.

I'm based in Detroit and will be taking part in Dr. Haacke's study in December. Hopefully I'll get some insight into what's going on with my veins--as all of you who have seen Dr. Dake, I'm hoping an abnormality is found!

Hope to take more part in the discussions, although the kids keep me incredibly busy!
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Postby Sharon » Wed Nov 11, 2009 9:37 pm

Welcome MS-mama!

Since you have been lurking on the site for awhile, you already know that we are a friendly and supportive group of people.

You are fortunate to be in Detroit and available to be in Haacke's study. Your recent diagnosis should be of great interest to Haacke.

am young, in my twenties with a toddler and a baby and the CCSVI research has given me hope where none,


I think we would all agree with you - the CCSVI research has given us hope. Resolution of a stenosed vein is not a cure for MS --- but, we do know that symptoms are relieved without the drugs.

Good luck to you -- please be sure to update us with your test results.

Sharon
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Postby Ruthless67 » Wed Nov 11, 2009 9:42 pm

Welcome MS_mama,
I'm a newbie here myself, just discovered this site less than a month ago. And it is some of the best reading and information I've gotten my hands on in awhile. And everyone has been friendly and helpful. So kick your shoes off and stay awhile whenever you can.
Lora
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What to expect

Postby SandyK » Wed Nov 11, 2009 11:34 pm

Hi. I'm very new to this site and don't know if this is the right spot to post this. I have no insurance and I have started sending information to Alex about seeing Dr. Dake. I'm super scared but I want to go for it. I have the paperwork for financial assistance. I think I can drive to CA and stay at my uncles place. I live in WA so it should take about a day to get their. I am doing this alone and I don't know if I am missing anything.
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Postby Sharon » Thu Nov 12, 2009 7:41 am

Welcome Sandy!

Have you read the research "sticky" threads at the top of this forum? This is a good place to start. There is also a thread "Getting Ready for Stanford" http://www.thisisms.com/ftopict-7387.html.

Alex will help you out with the financial asistance.

There is a ton of information on here - use the search function and key words to help you locate the threads. And, if you can't find an answer, just ask --- we are all here to support and help each other.

Sharon
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Postby SammyJo » Thu Nov 12, 2009 6:52 pm

SandyK
So glad you are in WA, me too, and we've got a great local MS support group, that actually does things to help people. MS Helping Hands MShelp.org is in Edmonds WA, they have a warehouse of mobility equipment (based on donations, what you can afford) if you need anything (I used a rolator from them the first week I was home).

I have advanced disability, use a cane, and looking for any resources we can collect for people wo are doing this w/o a caregiver. Here's one

There is an MS Foudnation that will give grants to those lacking financial resources, for someone to meet them at the airport on their return, get them settled in at home etc. If you need it for someone before I get everything together, it is 888-673-6287 http://www.msfocus.org/Homecare-Grant-Program.aspx
Coming Home from the hospital can be a difficult time of transition. The MSF Home Care Assistance Grant Program offers a four-hour visit from an aide who will meet the patient at the hospital, provide transportation, and get the patient settled comfortably at home.
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Postby SandyK » Fri Nov 13, 2009 1:52 pm

Thank you so much. Edmonds is only a ferry ride away. I live in Kingston. I will look into this organization.
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Postby ozarkcanoer » Fri Nov 13, 2009 2:07 pm

MS_mama !!!! I'm going to Detroit in December to be imaged for Dr. Haacke's study too !!!! I'll be there December 7. When are you going ?? It would be fun to meet. I believe we are from different generations but we have MS in common.

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Postby MS_mama » Fri Nov 13, 2009 5:05 pm

ozarkcanoer, I'll be there from the 9th...my appt is on the 10th. I'm guessing you will be gone by then. It would be nice to meet up though :D
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