Transverse Myelitis and Stem Cell Therapy (3)

For those of us with Transverse Myelitis, we are eager to know whether Stem Cell Therapy may make a difference to our recovery, and whether there may be problems as part of the treatment. I tracked down Neil Burton's blog (from the UK (see Transverse Myelitis and Stem Cell Therapy (2)) to see whether he had posted an update since the 23rd January 2014. No luck, so I left a message to enquire how things are going. I guess we don't know whether no news is good news or not.  :-(  (https://plus.google.com/102669743159144551082/about)

The discussions certainly continue. A post by Dr. Michael Levy, a member of the Medical and Scientific Council of the TMA, and an Assistant Professor of Neurology at Johns Hopkins University (http://myelitis.org/resources/tma-blog/research-studies/stem-cells-in-transverse-myelitis-are-we-ready/) on 14th February 2014, was very technical, and did not answer the question: "Are we ready?"

There is a great Youtube video you can watch of a lecture by Dr. Levy (https://www.youtube.com/watch?v=tDJBl2_0_Jc). Very clear. Very cautious. Essentially the message I get is that we should wait for sufficient suitable trials, before we all rush to the clinics, and spend enormous amounts of money.

Conversely, another site: "Stem Cell Regen Med" (http://www.stemcellregenmed.com/Transverse_Myelitis.html) has clinics in Florida and Peru, and their front page seems to be very upbeat, as though the research is already completed, and overwhelmingly positive:

"Transverse myeltis is a condition that results in the inflammation of the myelin sheath of the spinal cord. The area targeted goes across the width of the spinal cord at a certain level of the spinal cord. The problem occurs after vaccines (DPT, Influenza, viral infections, post radiation treatments, etc.). The underlying problem is that certain elements of the patient’s own immune system cause inflammation and sometimes destruction of the myelin.

Symptoms include pain in the arms, legs, back and neck, numbness, paresthesias, numbness below the affected area of the spinal cord, weakness of the arms and legs, muscle spasms, and/or headache. Tests may include lumbar spinal tap, functional MRI, or NMO-IgG test.

Many patients will clear up uneventfully after the acute phase, while others may have relapses. Some patients may go into a chronic phase with partial or total paralysis of the upper and lower extremities, spasticity, osteoporosis, and/or sexual dysfunction.

Treatment initially should include intravenous cortisone. If symptoms continue, plasma exchange therapy (apheresis) is considered. If the condition does not improve, StemCellRegenMed recommends stem cell therapy treatment.

Treatment by StemCellRegenMed consists of the following:

1. -> Autologous stem cells. The patient is given an injection of G-CSF once daily for three days. Peripheral blood or a bone marrow aspirate is withdrawn and in the laboratory, autologous stem cells are extracted and administered to the patient.
3. -> Following the above administration, the patient is given via spinal canal administration at the level of disease, neuron stem cells mixed with neurotrophins, nerve cell factor, neuropeptide protein, and glial derived neurotrophins oligodendrocytes. In addition, the following may be given: riluzole that targets sodium dysregulation in the affected spinal cord, minocycline that targets apoptosis, and neuroinflammation.
5. -> Targeting immune factors include anti-IL-6, anti-TNF, IL-17 and IL-1beta which attack the myelin in this condition.
8. -> Targeting axonal inhibitors such as Rho with Cethrin and ATI-355 against Nogo.
11. -> Electric field stimulation."

There is further work going on in India at a group called Neurogen (http://www.neurogen.in). Again some of the work seems promising, and there is a video you can watch on Youtube (https://www.youtube.com/watch?v=tkER2APp2ZY)

I guess all of that comes at a price.

There may well be research evidence that this approach works, but I have yet to find it. Some of the new work I have found is not necessarily positive. (http://nnr.sagepub.com/content/24/8/702.short)

There seem to be so many factors involved: the spinal level of TM, the age and fitness of subjects, the type of stem cells, the method of providing stem cells. It is hard to get your head around the detail.

Current Status: Sadly, I think we have to watch and wait. Be cautious. Beware of snake oil.

Keep watching the Transverse Myelitis Association site for updates. I will keep reporting progress as and when I can

Conflict of Interest: Yes, I do have conflict of interest. I have had T7 level Transverse Myelitis for the past 4 years, and reached a plateau last year. My function is slowly deteriorating, and I am feverishly looking for things I can do to stop that.