This Is MS Multiple Sclerosis Knowledge & Support Community

A woman has claimed her multiple sclerosis improved so dramatically she was able to walk again after being prescribed HIV drugs...Read More - http://www.ms-uk.org/MSnews

I was going to ask if this was the same team as in the Charcot project; searched before I posted . Dr Gold who is referenced in the article, IS part of Charcot Project http://www.youtube.com/watch?v=GTD1Bp-LZk4 And at least now I know how to pronounce it correctly. NB: This video was made back in 2012

Apart from its simply the media (BBC News © British Broadcasting Corporation 2015 (29/10/15)) that have brought it up, but apart from this fact, is there any other reason it has come up again? I know they were going to release some trial results recently, but were delayed. Has that changed?

Perhaps it is the retroviral effect of the HIV drugs on EBV?

I've asked Dr. Pender to comment.

PN

It is doubtful that someone who has been in a wheelchair for an extended period of time could walk without PT of some sort as they would have severe muscle atrophy.

ElliotB wrote:It is doubtful that someone who has been in a wheelchair for an extended period of time could walk without PT of some sort as they would have severe muscle atrophy.

In the video, the person is using dual forearm crutches, but still seems pretty mobile.

https://www.mssociety.org.uk/ms-support ... -hiv-drugs

More information.

Strange the the effect was not permanent.

Going to tackle my EBV using low dose immunotherapy. Will try MBP myelin basic protein at the same time. Will report back.

PointsNorth wrote:Going to tackle my EBV using low dose immunotherapy. Will try MBP myelin basic protein at the same time. Will report back.

I was on a trial of MBP 8298. It was cancelled due to the thing not working. It certainly didn't help me any but I met a lot of people it also didn't help. I don't know any of the people who were on the drug or who not. I was on placebo. I had a heart attack before they stopped the trial, but in my case the cardiotoxic thing I did a few years before that was to try mitoxantrone.

Anyway that variant of MBP was deemed to do nothing.

...It is doubtful that someone who has been in a wheelchair for an extended period of time could walk without PT of some sort as they would have severe muscle atrophy.
...

In the video, the person is using dual forearm crutches, but still seems pretty mobile.
...

Strange the the effect was not permanent.
...

If there was a non-permanent effect it indicates to me that whatever happened temporarily reversed the damage or unblocked some usual nerve pathway. How permanent was the damage?

I was amazed to see my foot move, when I used the device that electrically stimulates the nerve in your leg (used to help you walk). The motion that the foot performed is called eversion. It is a sideways motion of the front of your foot.

The motion I would have liked to see is called dorsi-flexion. That is the motion that moves your toes up (and out of the way), which is the main one missing in foot-drop. From what I was told, the nerve that controls that motion is buried underneath the calf muscle.

But eversion will move your toes out of the way, to the side. That is good enough for better walking than I can do unaided.

To me, the take-home lessons were:

• 1. The nerves are still there, and still hooked up correctly to operate the muscles.

• 2. My toes can still move, when operated by my intact nerves.

Atrophy is very very gradual muscle loss. Chances are, if you could fire the appropriate nerves, some of the muscle you were born with, and used during the healthy beginning of your life, would still work as before. You might require physiotherapy to recover strength and muscle mass.

Any voluntary movement is better than total paralysis.

That is what the Myelin Repair people are after. But I think the problems we are facing may be farther up than the peripheral nerves (like in the neck), and there is nothing wrong with muscles other than lack of exercise. I also don't even know if myelin repair will do all the things we would like it to... We can't walk, but we still know how.

1eye wrote:To me, the take-home lessons were:

• 1. The nerves are still there, and still hooked up correctly to operate the muscles.

• 2. My toes can still move, when operated by my intact nerves.

MS is CNS damage. ie in the brain and spine. All the peripheral nerves should be in-tact and functioning.

Hi all,

Just asking the question (I am not seriously thinking about it...now): should we buy some drugs with retroviral effects, available on the net ?

Best Regards,

CureOrBust wrote: MS is CNS damage. ie in the brain and spine. All the peripheral nerves should be in-tact and functioning.

So you unequivocally know that MS does not include peripheral neuropathy? No peripheral nerves involved? If it is driven by a virus or bacterium, I wonder why it doesn't spread shingles-like along peripheral nerves.

One of my first symptoms was a numb finger. No control problems yet. But it was definitely in a peripheral nerve. Yes it was connected via other nerves, but how could it be isolated to numbness there, without the ulnar nerve being directly affected?

The Charcot Project sounds fine but some study results soon would be welcomed
Wheelchair use and walking are not mutually exclusive, you know

1eye wrote:

CureOrBust wrote: MS is CNS damage. ie in the brain and spine. All the peripheral nerves should be in-tact and functioning.

So you unequivocally know that MS does not include peripheral neuropathy? No peripheral nerves involved? If it is driven by a virus or bacterium, I wonder why it doesn't spread shingles-like along peripheral nerves.
One of my first symptoms was a numb finger. No control problems yet. But it was definitely in a peripheral nerve. Yes it was connected via other nerves, but how could it be isolated to numbness there, without the ulnar nerve being directly affected?

One of the diagnosis tasks for MS is to exclude peripheral neuropathy. This task is performed using nerve conduction tests.

Excluding peripheral neuropathy using nerve conduction tests can be unnecessary torture. If you consider that unless something is wrong, there is no neuropathy, then sticking a needle into a nerve is very painful. If it is not painful, there is some kind of neuropathy, maybe. In my own experience there was no success in finding the correct nerve, and believe me, there was no numbness in any other nerve.

I had conduction studies where the guy used the signal from the needle stuck into my nerve, as a signal source, hooked up to a cheap audio amplifier. Then he wiggled the needle around in my nerve, so that he could hear the resulting audio scratches through his speaker. This was very very painful. I don't know what conclusion he came too, but it was neither quantitative, repeatable, nor accurate. If this is the state of medical science, leave me out of it. I seriously doubt whether he ever encountered my ulnar nerve.

There has to be a pain-free way of doing this. Please. For goodness sake you could use a TENS machine.