Hey all its been some time since I have let you know how things are and what's happening with my treatment, CCSVI in things in general, so here we go.
As far as I go I am doing OK. Rough month or so overall. My apologies if I haven't been myself and been in touch as much as normal. For the most part I have been having the "Normal Dave" issues which seem to be for varying degrees and longevity. The list for the last month or so is the dreaded extreme fatigue, heat issues (MUCH better with the weather change), optic neuritis (creeps in/out), cognitive issues and of course the sore/cramp like symptoms I sometimes get. I also seem to have these rare flare-ups what I can only describe as bone aches and pains. It feels like all my bones hurt and everything is rubbing on each other. The symptoms seem to last 2-3 days, give or take. This has happened to me 2 or 3 times over my time with MS. Pretty uncomfortable as you can imagine. Just have to weather the storm and try not to get PO'd about it. Other than that I think the weather change in general will do me a lot of good. Time to get out of the house!
CCSVI
A lot going on in the world of CCSVI. Two US (yes that says US!) double blind studies have started on the correlation between CCSVI and MS. Hundreds of people will be taking part between the two studies. This is VERY important for MS suffers and can't move along fast enough. If you are looking for details or want to get involved get in touch with me. Personally I am doing all I can do to get involved and help. I haven't gotten complete confirmation but it appears I may be taking part in one them. Again as with the procedure appointment this appears to be another waiting game for the "phone call". When will the waiting be over ....ugh... frustrating?
The basics purpose of these studies:
The study is being done to determine if venous angioplasty is an effective treatment for chronic cerebrospinal venous insufficiency (CCSVI). In this condition, areas of narrowing or blockages are present in the internal jugular or azygos veins (veins which drain blood from the central nervous system) and these blockages may be associated with symptoms classically attributed to MS. Therefore, angioplasty may help to improve the symptoms associated with CCSVI and multiple sclerosis (MS). In this study, the investigators will evaluate the effectiveness of angioplasty in the treatment of CCSVI by comparing two the outcomes of two groups of patients: one group with CCSVI diagnosed on a venogram and treated with angioplasty and one group with CCSVI diagnosed on a venogram but not treated. The patients enrolled in this study, and the neurologist evaluating patients after the procedure, will not know whether or not they were treated with angioplasty.
Fundraising
Thanks to everyone who has chosen to help. The words don't seem to be enough. I haven't reached my goal and I am still working hard to raise money. If you missed it the NYC auction ended and we have a new one for a 4 day stay in Sedona. This hotel and area are unbelievable. If you know anyone who may be interested you should let them know. This auction will be up on November 5th. Check it out at http://www.liberatedave.com/rouge.html. Any help is greatly appreciated.
I know a lot of you donated to my treatment and is GREATLY appreciated. A few of us involved on the trials are also trying to help raise some funds for help there as well. If you can spare $5 please help with this drive. Got to http://clinicaltrial.freewebpages.org/index.html and make a $5 donation.
I will cut things here as to not make this to long. There is more I will post in a week or two. Great things going on out there! Keep spreading the word on CCSVI.
