This Is MS Multiple Sclerosis Knowledge & Support Community

Getting rid of the fatigue is a huge improvement. I don't think anyone really enjoys the rehab process! My uncertainty is about how much Amir can fix, and what I'm left with. Sometimes, rarely, my legs feel just normally weak, but mostly they feel ms-y, tingly, numb, dead. When they feel that way, e...

This is impressive progress! How much did she rely on the walking frame a year ago? It is hard when you don't see the progress you had hoped for. Sometimes it seems to be a definite step forward and then there is a pause of nothing or worse a step backwards. It really helps to hear Emma's tale. I ho...

The improvements are quite far-reaching and impressive. I've found that once anything really improves, the rest seems more manageable, maybe because I expect it also to improve and hope makes life better in general. Is Emma using a vibroplate to rebuild muscle? I haven't been able to get therapy app...

I did just read of someone trying to email a friend in the UK and the email was blocked due to objectionable content. She selectively deleted various rants and once references to ccsvi and against big pharma were gone, it went through, no problem. Disconcerting.

I've been treated by Dr Amir since June 7. I've generally been doing well, excluding Sunday which reminded exactly how much better I've been. Sunday, my legs once again had that dead, numb exhausted feeling and my bladder was buzzy tingling. I was in the toilet umpteen times and even needed a change...

Jen, so encouraging to hear about motor improvements so early in treatment. Are you doing physical therapy as well to rebuild muscle or improve gait?

Robyn, In your place, I'd def find someone to look at your jaw, it seems to affect so much. I never would have believed it, but I got back home (Germany) from London last week and what a difference. Dr Amir gave me a new custom appliance to work on my jaw asymmetry and I feel totally different. Driv...

I've also become very skeptical, although the story of ccsvi and the vascular issues that obviously affect many patients does offer hope. The awareness and research has been patient-driven. I think only Schelling, of the early pioneers, has no personal connection to ms. There are researchers and sci...

I just got home from London and I also can't see how so many 'ms' symptoms can be remedied so quickly if they were truly caused by brain lesions. I have read of people who were diagnosed with ms posthumously because there were extensive lesions found in the brain during an autopsy although they had ...

very cool! I think I could have used that a couple of years ago.

I think what Cure or Bust is asking for is some kind of criteria of what constitutes a problem? With ccsvi, there is the ultrasound or mri, depending on where you go that shows or at least strongly indicates flow disturbances or blockages in the ijvs. Some have been scanned at home to identify the p...

It would be interesting to see before and after mri's to see what changes are visible but since they aren't needed for treatment, that would be complicated. But maybe if enough of us have 'before' mris already, it would just be getting afters done and comparing. I'm not convinced that an mri is the ...

It has been just over three weeks since I got my brace from Dr Amir. It is just amazing how quickly changes were evident. After an exhausting daytrip to London and stopping at every toilet between Frankfurt and Putney despite skipping breakfast and coffee after being fitted with my upper brace, my b...

We waited about a week and then flew back to Europe. I think Dr S was recommending not flying for 2-3 days, we waited a bit longer and visited family. I had no problems beyond the usual airline frustrations.

It seems very much like the ccsvi in a way to me. First there needs to be enough case studies to justify publishing an article. Then, the process has to be duplicatable by others which would lead to more published articles and studies. (and also opposition) It still takes time to get an idea to be a...