HIV drugs helps multiple sclerosis patient walk again

[NHE]

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

Hi PointsNorth,
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NHE

[MSbro]

I have read that over several years, various powerful immune system altering drugs have been used on MS patients with many different results. Some patients show remarkable improvement while others become very ill and get worse. Makes you wonder why it works in one person and does nothing for the next.

These are strong drugs and one has to think long and hard before using them.

[centenarian100]

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

Yes; Multiple sclerosis is a central nervous system disease. We know this because abnormalities are found on imaging studies and pathological tissues on autopsy in individuals with multiple sclerosis. People with multiple sclerosis generally have normal electrophysiologic tests of the peripheral nervous system. Peripheral nervous system problems are generally easily distinguished from central nervous system problems by physical exam (depressed reflexes, downgoing toes, glove and stalking or single nerve distribution, et cetera). An electromyogram/nerve conduction study is generally not required to evaluate someone with multiple sclerosis unless there is some ambiguity. You can, of course, have a concomitant and unrelated peripheral nerve problems.

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.

the varicella zoster virus (which causes shingles) infects the dorsal root ganglia and spreads to the affected dermatome along peripheral nerves. Shingles is a peripheral nervous system disease. However, varicella can also infect the spinal cord (VZV myelitis) or brain (VZV encephalitis) in rare cases. There is no conclusive evidence that multiple sclerosis is a direct viral or bacterial infection. It is not contagious. Spouses of people with multiple sclerosis do not have increased risk. There is some evidence for an association with EBV, but this is probably not due to direct infection (EBV may immortalize b cells or cause other immunologic changes).

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?

It is possible that a very small part of your central nervous system was involved in order to cause this system. Sometimes, a person will have a tiny cortical stroke which will cause isolated thumb weakness. It is also possible that you had an unrelated ulnar neuropathy.

-Cent

[centenarian100]

I have read that over several years, various powerful immune system altering drugs have been used on MS patients with many different results. Some patients show remarkable improvement while others become very ill and get worse. Makes you wonder why it works in one person and does nothing for the next.

These are strong drugs and one has to think long and hard before using them.

All treatments have varied results in different individuals. Even well established medical treatments such as antibiotics for pneumonia and appendectomy for appendicitis are not universally successful.

Anecdotal reports of successful treatments are simply not reliable. If we were to depend on this, we should continue using blood letting as this treatment has a long history of amazing anecdotes. People who believed in blood letting didn't THINK it was effective. They KNEW it was effective.

Multiple sclerosis disease modifying agents aren't proven to make anyone better. They are only expected to decrease the risk of relapses and MRI lesion accumulation. When people improve on therapy, it is often because they are improving from recent relapses (which has nothing to do with being on disease modifying therapy as this often occurs spontaneously) or experiencing the placebo effect.

Also, a lot of people with progressive multiple sclerosis take disease modifying therapies which are unproven to do anything in progressive forms of the disease. In fact, there are several negative studies in progressive multiple sclerosis (i.e. most recently the ASCEND study for tysabri in secondary progressive multiple sclerosis).

[NHE]

Anecdotal reports of successful treatments are simply not reliable. If we were to depend on this, we should continue using blood letting as this treatment has a long history of amazing anecdotes. People who believed in blood letting didn't THINK it was effective. They KNEW it was effective.

Well, it is effective for hemochromatosis. Blood letting using leaches is also effective for getting blood flow established in reattached body parts.

[1eye]

Peripheral nervous system problems are generally easily distinguished from central nervous system problems by physical exam (depressed reflexes, downgoing toes, glove and stalking or single nerve distribution, et cetera).

Well, that list doesn't specify which is which, but I have had Babinski's sign and drop-foot for about the same length of time. Lack of strength is mainly on one side of my body. I have never been told I have any concomitant peripheral neuropathy. Is there a map of he brain which shows sensation arriving from my pinkie follows a certain path and is located in a specific spot in my brain? Or is it anybody's guess?

[MSbro]

Multiple sclerosis disease modifying agents aren't proven to make anyone better. They are only expected to decrease the risk of relapses and MRI lesion accumulation. When people improve on therapy, it is often because they are improving from recent relapses (which has nothing to do with being on disease modifying therapy as this often occurs spontaneously) or experiencing the placebo effect.

Also, a lot of people with progressive multiple sclerosis take disease modifying therapies which are unproven to do anything in progressive forms of the disease. In fact, there are several negative studies in progressive multiple sclerosis (i.e. most recently the ASCEND study for tysabri in secondary progressive multiple sclerosis).

And because of the very good marketing/sales techniques that these companies use, they have made millions and millions of dollars off these drugs which, like you said, really don't do much if anything in the long run. I guess this is why these companies spend the vast majority of their funding on marketing and sales!

[Leonard]

of course, highly active antiretroviral therapy (HAART) works against MS because it tackles the viruses that underly MS.

see also my thesis MS UNRAVELLED of 10 Aug on http://www.thisisms.com/forum/general-d ... 8-720.html

[1eye]

And because of the very good marketing/sales techniques that these companies use, they have made millions and millions of dollars off these drugs which, like you said, really don't do much if anything in the long run. I guess this is why these companies spend the vast majority of their funding on marketing and sales!

Billions and billions, actually. Multiply the number of people in the world (or even half of them) with MS by $50,000 and you have annual sales. They can afford the marketing and sales...

[1eye]

of course, highly active antiretroviral therapy (HAART) works against MS because it tackles the viruses that underly MS.

see also my thesis MS UNRAVELLED of 10 Aug on http://www.thisisms.com/forum/general-d ... 8-720.html

Why is it different from say HIV drugs every one else uses?

Have you tried it? Is it more rich-people drugs?

[MSbro]

Billions and billions, actually. Multiply the number of people in the world (or even half of them) with MS by $50,000 and you have annual sales. They can afford the marketing and sales...

Yes, you are very right! I always chuckle when you hear the explanation from these companies on why they charge so much for their drugs...our research costs are so high! What they should be saying is...our marketing and sales costs are through the roof.

[Leonard]

of course, highly active antiretroviral therapy (HAART) works against MS because it tackles the viruses that underly MS.

see also my thesis MS UNRAVELLED of 10 Aug on http://www.thisisms.com/forum/general-d ... 8-720.html

Why is it different from say HIV drugs every one else uses?

Have you tried it? Is it more rich-people drugs?

nop, haven't used it but I know the incidence of MS is much lower under HIV patients. And epidemiological evidence doesn't lie.

The most effective treatment for HIV is highly active antiretroviral therapy (HAART), a combination of several antiretroviral drugs.

I don't know about the cost of HAART as compared to the cost of the typical MS drugs..