Update on Court

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

Update on Court

Postby Johnnymac » Wed Feb 10, 2010 10:21 am

Been a little bit since I've updated on where we are with things.

We got Courtney's GP on board and she gave us the referral/script for an MRV (luckily we've had the same GP since before the MS so she is very open to helping us get whatever testing we need done). I've been in touch with the IR department at a local university hospital and they are waiting on AIM for their approval on the procedure so we can get scheduled for the exam.

The really great news is this IR is very interested in CCSVI and has a good relationship with one of the neuros at Courtney's MS clinic (she currently goes to a couple of Neuros at different clinics). The IR doc and the neuros will both be involved in this testing and evaluation and from what the nurse told me they are working together to determine what protocols they want to use in testing for CCSVI going forward (they are familiar with the currently published CCSVI diagnostic protocols).

The bad news is Courtney's fatigue is getting really bad, she has very little motivation to do much of anything and it kills me to see her like that. I've got her on Ginko and Horse Chestnut now in addition to her other supplements and bumped up her D3 to 6k IUs daily. She hasn't been on any approved MS treatments since her last Tysabri infusion last September and she doesn't want to make a decision on anything until we can make it through the CCSVI diagnostics. All the MS drugs she's taken over the last three years have done nothing to stop her progression (yet no new lesion activity in any of her MRIs over the last 3 years...in that same time has gone from about a 2.0 on the EDSS to a 6.0-6.5).

I think about all of you out there fighting MS every time I watch my wife hobble behind her walker and I hope you all get relief soon.

Will post any updates back to this thread.

Cheers,
John
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Postby JoyIsMyStrength » Wed Feb 10, 2010 2:29 pm

Yours is a beautiful love story. Wishing you all the best and look forward to more news! Thanks for being a supportive husband and advocate for your wife. Her condition sounds very similar to mine, plus I also have a caring, understanding and loving husband. People like you are a rare gift for people like us... this disease can be hardest on the ones we love.

Hugs to Courtney and a message: "Hang in there sweetheart. Your husband lets everyone know how beautiful you are with every forum post."

Pam
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Postby Johnson » Wed Feb 10, 2010 2:57 pm

Thanks, John. I can but echo joyismystrength's comment. Having someone navigating through the system for us is huge. I don't have the same luck that Courtney, Jeff Beal and others have, but I have my own kind of luck, and I've lapsed into babbling...
My name is not really Johnson. MSed up since 1993
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Postby lilsis » Wed Feb 10, 2010 3:10 pm

what do you think of the inclined bed therapy idea? is your wife getting any massage therapy, physiotherapy, manual lymph drainage? these things seem to help my sister with her fatigue levels... she also has said since starting gabapentin and minocycline she has more energy to do things, she's made dinner every night for the last week, she usually only manages maybe twice...
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Postby SammyJo » Wed Feb 10, 2010 4:43 pm

What about LDN? If you've got a supportive GP, just get a script and try that, if not using any opiate based pain killers.

I had fabulous results for 4+ years on it, and many have done great even longer. To fill it, I use http://skipspharmacy.com mail order. At least this might get her some relief from fatigue.
RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 | http://www.patientsforstemcells.org/
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Re: Update on Court

Postby euphoniaa » Sat Feb 13, 2010 8:56 am

Johnnymac wrote: The bad news is Courtney's fatigue is getting really bad, she has very little motivation to do much of anything and it kills me to see her like that. I've got her on Ginko and Horse Chestnut now in addition to her other supplements and bumped up her D3 to 6k IUs daily. She hasn't been on any approved MS treatments since her last Tysabri infusion last September and she doesn't want to make a decision on anything until we can make it through the CCSVI diagnostics. All the MS drugs she's taken over the last three years have done nothing to stop her progression (yet no new lesion activity in any of her MRIs over the last 3 years...in that same time has gone from about a 2.0 on the EDSS to a 6.0-6.5).
John


Hi John,

I'm very sorry to hear about Courtney's decline, but glad she may have the opportunity to get testing and treatment for CCSVI soon. I'm excited about that myself. In the meantime, I thought I'd add a teensy bit of my experience. I've posted many times about my severe reactions to meds, supplements, and even vitamins. I keep daily charts, and I've had worse experiences from a few of them than MS has ever given me - especially Omega 3s. Honest!!

Since my dx 6 years ago and discovery of MS forums, one of the things that surprises me has been how often people assume that supplements are practically harmless. Just like you mentioned above, often they take them, and, if they get worse, they just double the dose or something. My approach is never to ADD more of a supp/vit, but instead to STOP doing it first and see what happens. That always seems to work for me. I usually try again later, just in case. It's really amazing how obvious it is once you monitor carefully.

In my case, it seems to also be due to brands, which may be from impurities and/or an allergy to additives. That causes MAJOR problems (usually digestive). Even vitamin D, which I know is important, causes me enough problems that I can only handle about 500 IU - of an expensive, pure brand with no additives. To me, vit D is completely constipating. Even though I've had the opposite problem for 50 years :), suddenly, with vit D, I was constipated for the first time ever! It also seemed to cause some body aches & fatigue (I looked up my results). My body can NOT handle 1000 IU, but 500 IU kinda makes my digestive system normal for a change. Powerful stuff...

So, long story short...why don't you have her stop all or most of the supplements for a week or so, and then add the most important ones back one at a time, monitor carefully, and see what happens.

I'd also agree that LDN is a relatively harmless choice - probably less worrisome than mega doses of supplements :) , and I find the inclined bed idea fascinating - wish I could fix mine that way myself!

I wish both of you well!
Last edited by euphoniaa on Sat Feb 13, 2010 3:44 pm, edited 1 time in total.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby gibbledygook » Sat Feb 13, 2010 9:01 am

I had a new disability appear whilst taking moderate doses of just horsechestnut which is vasoconstrictive. I found dilators to be better but in low dosages. I went a bit crazy on them and took anything up to 14grams of salvia miltiorrhiza!! That was NOT a good idea. I would follow euphoniaa's advice and be cautious about the supplements.
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