Opinions on Transverse Mylitis treatments

[anty]

Hi all.

I have tm and would like recommendations on what treatments are available out there for me.

I have heard of Dr. Lima's and Huang's treatments and am not sure if they would work for me.

I have a C5-t2 lesion and am taking quinine, baclofen and keppra for spasms. They have been helping and I am going to PT regulary.

Does anyone have any opinions of which treatments (within US or abroad) that would apply for TM?

[Wise Young]

Anty, I believe that most of the therapies that are now being tested for spinal cord injury applies to transverse myelitis (TM). Transverse is a form of spinal cord injury. It is not traumatically induced and there are probably many forms of TM. However, all that I know about TM suggests strongly that regeneration and remyeliantive therapies should restore function for TM as it should for spinal cord injury. The advice that I have for you would be the same as for people with spinal cord injury:

1. Please take care of your body. Make sure that it is healthy and try ot prevent atrophy of your bone, muscle, and skin. Try hard not to do anything irreversible to your body because this will make it more difficult to resotre function.

2. Exercise not only maintains the body but also may reverse "learned non-use". There is evidence to suggest that non-use not only result in atrophy of your body but your spinal cord as well. Exercise and activity maintains circuits in your spinal cord.

3. Please follow the progress in therapies aimed at restoring function after spinal cord injury. While this is clearly not enough, a number of cell transplant therapies appear to be producing significant improvements in sensory function and modest improvements in motor function. This is only the first step. We now need to build on this important first step by combining the transplantation therapiy with other therapies that stimulate regeneration and remyelination.

4. People and families with transverse myelitis should call for and strongly support TM research. As you know, few scientists are working on TM and the causes of this condition are not known. There is no animal model of TM and as long as we don't have an animal model, there will be very slow progress in understanding how to treat the condition and how it differs from traumatic spinal cord injury.

I believe that stem cell therapy offers the best hope for TM at the present time. This is because I subscribe to one theory that transverse myelitis is a result of vascular inflammation that causes ischemic injury to the spinal cord. Ischemic injury kills both neurons and also oligodendroglia in the spinal cord. If so, there may be other therapies that might be beneficial for transverse myelitis besides stem cell therapies. Specifically, I think that some people with transverse myelitis may have demyelination as their primary problem. If this is the case, they should respond to the drug 4-aminopyridine. There are also many cell transplantation therapies that have been shown to remyelinate the spinal cord, including embryonic stem cells, Schwann cell transplants, and olfactory ensheathing glia. As you know, there is tremendous controversial concerning adult and embryonic stem cells. In my opinion, there is simply not enough known to say that one or the other will be the best for transverse myelitis. We should not close the door on any of these options.

I hope that this has been helpful.

Wise.

[lynnifer]

Just because I like to beat a dead horse ...

There is absolutely, unequivocably no way to get 4AP now, riiight?

[Wise Young]

lynnifer, you can get compounding pharmacy 4-AP. Wise.