This Is MS Multiple Sclerosis Knowledge & Support Community

cheerleader wrote:Really glad you documented it.

I of course did it for my own benefit. Being able to actually see the difference makes it easier to accept / know where your at. I actually am surprised how little the video shows in improvement, it feels way better. But that's the reason I kept documentation of it.

cheerleader wrote:Do you credit this to your exercise and supplement program?

I of course can not "credit" it to anything specifically, except all the things I have done. The item that has recently made me feel more in control, is that my only known trigger for a relapse is an infection, and Tamiflu appears to limit/control those. Makes me feel considerably less answerable to this disease.

DIM wrote:what's your current medication, still on LDN, simvastatin and antibiotics?

DIM, I have been off LDN for a number of years. I am on 80mg Lipitor. I try to take 2x100mg Mino (for its anti inflammatory properties, not for infection, and I cant say I notice when I skip it, just extra insurance). I take a LOT of supplements; Inosine, D3, Turmeric, Omega 3 (high DHA). Lots of others, but not as regularly. I have been off the ABX regimen for a while as after over 2 years, i kept on having relapses. The above seems to be a big oversimplification to me, but its the major chunk of it.

ooo... almost forgot, and exercise. As much as I can drive myself.

and sub lingual B12

So my next question arises Cure, what do you believe helps you more statins, LDN (I don't think as you stopped it) or ABXs?
Our doctor Dr Mylonas is one of the first that researches statins for MS and have some publications on them.

What I think has helped me the most is the Lipitor and exercise. But of course, what I think means very little to MS. Also note, that it has not stopped relapses, but helped me recover (I think )

As for stopping relapses, with my only known trigger being a cold/flu, then Tamiflu is the hero there.

I stopped the LDN, as I didn't see any positive benefits while I was on it. I may have noticed my walking was a little stiffer/harder the following day. However, since I never had anything close to the lucid dreams others have talked of, I question whether it really caused the expected peak in Beta-endorphins.

The ABX I take, is not in the true vein of "ABX'ers", who take it for CPn, and take 3 different medications. I tried the ABX regimen, but it did not work for me. I simply take mino now, as it has shown some very positive outcomes in small trials so far. But I can't say I could attribute anything to it.

Fantastic record, Cureo. Keep up the good work!
ps. My quack is dragging his feet over the doppler scans...so much for my GP saying it would be easy.

gibbledygook wrote:ps. My quack is dragging his feet over the doppler scans...so much for my GP saying it would be easy.

Trust me, I have been delayed by more than one person saying they could, wait, then no. What is your credentials? a sonographer? neurologist? vascular specialist?

I had multiple paths in motion at once as backups, all failing. Just be glad you haven't had the frustration of getting so close to the line, then finding you have unwittingly sabotaged your own efforts.... like I did.

Now that I may have a Dr willing and possibly interested, it seems his "profile" may be a good path to try.
He is a neurologist specialising in strokes. from my simple understanding, strokes are related to arteries and veins in the brain, and neurology relates to MS. This field would logically be the most familiar with the type of tests Zamboni is performing, with the addition of the medical field MS falls into . I guess this is why my last sonographer suggested this guy. And hindsight makes it such an obvious path now to me. However, this guy is at a hospital about 2hrs outside of Sydney. So why no recommendation for a Sydney based stroke Dr

My GP referred me to a neurologist who he said should be able to do the scans without problem. My heart sank when I saw a white-haired, rather wizened old man. He nevertheless confirmed that the scans were easy and cheap to do but was concerned that the Zamboni research wasn't valid and hadn't been published. This was because he noticed a typing error in the 2008 article. Frankly he was chafing to discredit the research as he started banging on about how people had tried omega 3s and then bee stings etc when I explained I was using curcumin and salvia. So he refused to organize the scan until he had checked out Zamboni with his friends at Imperial college. So now I'm waiting for an email. The medical profession is just like the civil service; neither civil, nor a service.

I have an actual appointment for the 17th of Feb, with the neurologist that said he could do the scans. I asked the assistant making the appointment with me, and she could not confirm if it was simply an initial consult, or if he would actually do some sonography. From previous discussions, Tuesday afternoons are when they are most likely to perform any sonography. Also, in all my emails, I kept using the word "tests".

Good luck with this, Cureo. I contacted Zamboni who described ECD as cool for MS!!!! He said that the ECD should be available in London by the end of the year....he also didn't answer my question which was whether there were any contacts in London he would recommend!

I went and saw another neuro today. I'm not dropping my existing neuro, but I saw this one because he is the lead guy in Australia for the Campath trials, which I do not qualify for. I was hoping that he may know or be able to help me somehow get it off-label. No luck, he said that in Australia it would be illegal for anyone to apply it for MS outside of the trial. Basically the same thing my actual neuro said. DOH! Looks like I may have to either develop Chronic B-Cell Leukaemia, or go O/S for that...

I also saw him, because when his research assistant told him my history, he was interested to see me, if I wanted. I think what caught his eye was that I was originally misdiagnosed with CIDP.

Anyway, it was actually very interesting. This guy is going to run a battery of blood test, for differential diagnosis. As he was writing the test down I told him "you can call my GP and he would have the results on file". To this he said "I want to confirm them myself". He has also booked me in for a battery of nerve test (evoked potential, conduction etc etc) as well. He is VERY thorough. I like it, I always wanted to do the evoked potential exam. He also informed me that his lab was the only lab in the state that can perform the test for Devics (he may of said country). He also wanted to do a spinal tap, but I said that was off the table.

He kept on looking at me saying "your very interesting". For example, he noticed I had tiny spasms in my chin, which he wanted to take video of, and said "this is a very common symptom of MS". Which confused me as to why I was therefore "very interesting"? He said because its in all the text books, but you don't actually see it in person very often. He wants me to come in so he can show 10 other neurologists.

I felt like I was in a teaching hospital or on the TV show "House MD". He had a more junior neurologist and his research nurse in the examination room the whole time, and kept pointing things out to them. I guess it was my first experience of the hospital system, normally I see specialists at their private consulting rooms.

What also interested me, he told his junior neurologist to book me in for the tests, and she told me that it would be in about 3 months, to which he told her that he will make room for me next week, so I go in tuesday next week. I feel so special.

The bad news however, he thinks I have SPMS, and not RRMS. Which brings me to another questing, for another thread.

Actually, I just remembered, he says he has some non-intrusive device that can distinguish between RRMS and SPMS???? Huh??? I will know more next week. Anyone else hear anything like this?