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greyman wrote:I have contacted Dr. Castillo Recarte in Madrid and - after some e-mail exchange - scheduled the date for CTOS diagnosis on 10th of Nov and the procedure, if necessary, on 18th of November this year.
I completely agree. I believe people should pursue every possible avenue before accepting the "MS" diagnosis as the cause of neuro symptoms. It's a travesty when other conditions/syndromes are misdiagnosed as "MS."greyman wrote:I thought - what the heck - all of my impairments should be removed.
Helloblossom wrote:greyman, great that you can get this done. you may have posted this about yourself and i missed it. would you mind telling your age, type ms, lenght of illness, and extent of disability? i think you are the first at this site getting this done.
Couldn't be said betterHappyPoet wrote:I completely agree. I believe people should pursue every possible avenue before accepting the "MS" diagnosis as the cause of neuro symptoms. It's a travesty when other conditions/syndromes are misdiagnosed as "MS."
Diagnoses: lyme disease, Wilson's diseaseHappyPoet wrote: What other kinds of treatments and diagnoses have you tried?
I haven't tested my vit D levels. I will do so next week.HappyPoet wrote:My Vit D3 level was close to zero, so now I supplement. Unbelievably, I had to fight with my PCP to order these tests for me;
And same to you HappyPoet, and every MS patient anywhere in the world!HappyPoet wrote: I wish you all the luck in the world!
HappyPoet, what is CCVBP and does that involve chiropractic treatment? I'm asking because my darling man also experiences numb feet. He started to feel some relief immediately after his CCSVI procedure but in a few days they went back to being numb again. Because of the broken neck he sustained in his 20's (he'll be 59 next month), and the subsequent neck surgeries (the last one was five years ago) that have completely fused the vertebrae in his neck, I don't know if he'd even be a candidate for any type of chiropractic treatment.HappyPoet wrote:greyman wrote:I have contacted Dr. Castillo Recarte in Madrid and - after some e-mail exchange - scheduled the date for CTOS diagnosis on 10th of Nov and the procedure, if necessary, on 18th of November this year.
Wow! This is so exciting for you. You're going to one of the world's leading doctors for CTOS diagnostic testing/treatment -- I wish I could join you!
I completely agree. I believe people should pursue every possible avenue before accepting the "MS" diagnosis as the cause of neuro symptoms. It's a travesty when other conditions/syndromes are misdiagnosed as "MS."greyman wrote:I thought - what the heck - all of my impairments should be removed.
What other kinds of treatments and diagnoses have you tried?
First, I pursued CCSVI (venoplasty). I can now sleep, and M-T was ruled out;
Second, I looked into nutritional deficiencies, thanks to jimmylegs -- she has great advice and links and is always willing to help. My Vit D3 level was close to zero, so now I supplement. Unbelievably, I had to fight with my PCP to order these tests for me;
Third, I pursued CCVBP (Atlas Orthogonal) and can now walk on feet that are not numb anymore -- treatment continues;
Fourth, I'm just now starting my pursuit of ruling in/out CTOS;
Fifth, I'll start back at the beginning again with repeat blood tests for Lyme disease and others... maybe some of the tests are now more sensitive/accurate than they were ten years ago when I was diagnosed with RRMS.
I wish you all the luck in the world!
Hi Trish,Trish317 wrote: HappyPoet, what is CCVBP and does that involve chiropractic treatment? I'm asking because my darling man also experiences numb feet. He started to feel some relief immediately after his CCSVI procedure but in a few days they went back to being numb again. Because of the broken neck he sustained in his 20's (he'll be 59 next month), and the subsequent neck surgeries (the last one was five years ago) that have completely fused the vertebrae in his neck, I don't know if he'd even be a candidate for any type of chiropractic treatment.
I'm very interested in CTOS. I think it's another piece of the puzzle.
No no, I don't have it ;). I mean lyme and Wilson's - just tested to rule it out and to definitely diagnose MS.HappyPoet wrote:
So sorry you have Lyme and Wilson's -- very interesting that you accumulate both iron (CCSVI) and copper (Wilson's) in the brain. I hope any treatment for this "MS" mimic is helping.
Thank you, Pam. I'm going to do some research.HappyPoet wrote:Hi Trish,Trish317 wrote: HappyPoet, what is CCVBP and does that involve chiropractic treatment? I'm asking because my darling man also experiences numb feet. He started to feel some relief immediately after his CCSVI procedure but in a few days they went back to being numb again. Because of the broken neck he sustained in his 20's (he'll be 59 next month), and the subsequent neck surgeries (the last one was five years ago) that have completely fused the vertebrae in his neck, I don't know if he'd even be a candidate for any type of chiropractic treatment.
I'm very interested in CTOS. I think it's another piece of the puzzle.
CCVBP = Chronic Craniocervical Venous Back Pressure.
CCVBP involves only the upper cervical spine, and there are several approaches. Dr. Flanagan (uprightdoc) recommended an excellent Atlas Orthogonal chiropractor very close to my home. You should definitely ask him about your darling man's case.
Here's a link to his thread: CCSVI and CCVBP
Best wishes,
~Pam
I am very happy you don't have them!!greyman wrote:No no, I don't have it ;). I mean lyme and Wilson's - just tested to rule it out and to definitely diagnose MS.
Sorry for the mix-up!There's a lot of information regarding CCVBP -- if you have any questions, Dr. Flanagan will be glad to answer them to help you along the learning curve which I found to be similar to the learning curve of CCSVI - steep.Trish317 wrote:Thank you, Pam. I'm going to do some research.
