I thought I would make a departure from griping about things I cannot change and talk about something relevant. I decided to change doctors when I felt that my current set of physicians was not taking an aggressive enough approach to my treatment. I decided to see someone in Manhattan - NYU has a very good MS treatment center. I chose Dr. Joseph Herbert, a front runner in the field and one of the top physicians in the country. He suggested I may have another disease entirely, NMO (neuromyelitis optica) otherwise known Devic’s disease. This is an illness which also involves demyelination, except the cause is known. There is a specific antibody which, if present, facilitates the autoimmune demyelination response. While there is no cure, there is a way to suppress the antibody. Devic’s disease largely affects the spine and optic nerve leaving the brain alone. This would account for the fact that I am progressing rapidly in my physical disability but my brain is chiefly unaffected. I had an MRI as well as a blood test to determine whether or not I had this disease. The blood test came back negative while the MRI showed telltale signs of the disease. The doctor suggested I may have had a "false-negative" with the blood work. He said he treats a number of other patients who have also had similar blood work results. While my diagnosis is still up in the air, he did suggest a number of treatments which may be effective for both MS and NMO. For those of you with advanced MS, you may want to inquire about these treatments:

1. Cyclophosphamide: Trade name: Cytoxan
   This is a chemotherapy drug that has been around since the 1950s. I have a link to an article that gives a more in-depth discussion about this drug under the "News" tab. This drug can be taken by itself or in conjunction with a bone marrow transplant; however the risk of death increases significantly with the latter. There is some pretty positive resultant data, though. When I asked my doctor about this he said that there was one neurologist at Stony Brook who had done this procedure, I believe he said his name was Goldstone or something similar.

 
2. Rituximab: Trade names: Rituxan and MabThera
   This is another chemotherapy drug initially developed to treat non-Hodgkin's lymphoma and was subsequently found effective for rheumatoid arthritis. It is an off-label treatment for both Devic's and MS.

 
3. The third treatment is something I am seriously considering. My doctor told me about a procedure of being done by a rather unconventional neurologist in New York City, I don't remember his name. What he is doing is injecting chemotherapy and directly into the spinal fluid. He has done this with several hundred patients with positive results, ranging from halting progression to improvement in bodily function. My doctor is going to inquire further about this treatment, and we will discuss it in the upcoming weeks. I'll keep you posted.

I want to be clear. I am not advocating anybody take these drugs without serious consideration to the side effects. There is a slight but definite risk of leukoencephalopathy, increased risk of developing certain types of cancer, and all of the other potential downsides to chemotherapy such as weakening of the heart muscle, renal failure, Hepatitis B, just to name a few. Please consult your doctor to decide whether or not the benefits would outweigh the negatives of taking any of these treatments.

Please refer to the following for additional information:

• Cyclophosphamide and MS
• Cyclophosphamide Risks/Contraindications
• Rituximab and MS
• Rituximab Risks/Contraindications