Sunday, June 21, 2009

My Visit to the NIH: Our Tax Dollars at Work

A few months ago, while leafing through one of the many MS publications that find their way into my mailbox, I came across a notice about a study being conducted by the National Institutes of Health that sought to compile a large database of MS patients who might be used in future studies. The NIH was seeking subjects to come down to their facilities in Bethesda, Maryland for a complete diagnostic workup, so that they might be classified as having a definite diagnosis of MS, and thus be eligible for future research studies. The NIH would also use the opportunity to compile data to be included in a wide-ranging "Natural History of MS" analysis.

Since my diagnosis has been called into question, this sounded like a terrific opportunity to get some questions answered, and to take part in research that might eventually help to unravel the mystery of MS. It seemed like a no lose proposition; I could help myself by having NIH scientists evaluate my case, and I could help in the fight against MS by submitting to their research protocols. The study would give me the opportunity to donate my body to science without having to go through the inconvenience of actually dying.

I called the study’s intake telephone number, and spoke to a helpful nurse at the NIH’s Neuro Immunology department. Given the fact that I live a considerable distance from Bethesda, she was at first a bit discouraging about my taking part in the study, but as I explained the atypical nature of my disease presentation, she suggested that I forward my medical records to the department. I faxed my records over to them the next day, and about a week later received a phone call telling me that I had been accepted into the study. Not only was I accepted, but the NIH would also pay for me to stay two nights in a hotel near their facility. Very cool.

My wife and I drove down to Bethesda last Tuesday night, and were seen at the National Institutes of Health's main facility on Wednesday afternoon. The facility is located on a large campus, comprised of about 30 buildings. The main medical center is the second-largest building in the federal government, smaller only than the Pentagon. To say that the facility is impressive is an understatement. Every person we interacted with, from desk clerks to nurses to physicians and researchers, was absolutely top-notch, and not only extremely proficient at their given job but friendly and personable as well.

Over the course of two days, I was examined by the NIH’s Neuro Immunology staff. I was given some physical and cognitive testing, and a thorough neurologic examination. Blood samples were taken, and I underwent brain and C-spine MRIs.

The doctor who examined me was absolutely superlative, a brilliant woman who spent almost 5 hours over the course of two days interacting with my wife and me. She not only took a full medical history, and conducted a comprehensive neurologic exam, but also answered all of my numerous questions in a thoughtful and deliberate manner, and indulged me in long conversations on topics ranging from the many different theories regarding the MS disease process, the influence of Big Pharma on medical research, and the promise of future therapy options (stem cells, neuroprotective agents, etc.). She was insightful, genuinely interested in my case, and frank and honest in her assessments. While very compassionate, she also maintained a strict scientific perspective. I really can't praise her highly enough.

After looking over my previous MRIs and medical records, the doctor advised me that my case did seem quite atypical, and that I might not be able to get a definitive diagnosis simply because my disease profile does not fit the diagnostic criteria of Primary Progressive MS, or any of the diseases that could likewise be causing my symptoms. The bottom line is that I have a big honking lesion right at the base of my brain, a very problematic spot, which is causing all of my neurologic problems.

This Monday, the staff of researchers and physicians of the Neuro Immunology department will go over all of my new MRI images and blood test results, along with the information gathered from my physical examination and medical history, and try to come up with a determination regarding my disease. I should receive a phone call on Tuesday or Wednesday about their findings, and suggestions for future treatment options and/or diagnostic testing.

If it's determined that it's probable that my disease is a form of MS, I'll be asked to continue with the study, which would involve my going down to Bethesda in July for some additional MRIs and a lumbar puncture. Whether I continue with the study or not, I was told that I am now part of the NIH system, and was encouraged to use them as a resource regarding any questions or issues I might have regarding my disease and future treatment options or testing. I was also told that I could request another evaluation at any time, should changes in my disease warrant it.

All in all, whether or not I get a definitive diagnosis, my experience at the National Institutes of Health in Bethesda was an extremely positive one. I felt like I was doing my part to help fight this damned disease, and it was inspiring to find such a well-run facility, devoted entirely to pure medical research, staffed with exceptional people, and funded solely by our taxpayer dollars. My visit there helped further my faith that, despite the dysfunctional nature of much of our health care system, the puzzle of multiple sclerosis, and many other diseases, will eventually be cracked.


  1. Thank you for offering yourself up for the common good. I hope they get to the bottom of your problem quickly and that the atypical nature of your MS(?) intrigues them enough to dig deep and figure out what's going on.

    Bestadmom Michelle

  2. Hi Marc,

    Good post and good to hear you are hopeful that the causes of MS and other degenerative diseases will be found.

    Do hope so too.

    Happy Summer Solstice to you.

  3. Hey WK -

    Have you tried holding your breath while standing on your head and drinking a glass of water? Works wonders for hiccups, so I was just thinking ...

    This post has actually given me hope. Hope that researchers are at least interested in tracking the stats on all presentations of MS, not just the RRMS and SPMS forms. I thank God every day that PPMS is as rare as it is, then curse the same fact for selfish reasons.

  4. Great post. Let us know what they say.

    My mom always tells me that soaking my feet in warm water might help me walk again. HA My wife and I laugh. So maybe the NIH will tell you that your feet are just dehydrated.

  5. "The study would give me the opportunity to donate my body to science without having to go through the inconvenience of actually dying."

    You clever bastard! I'm truly appreciative of giving objective information about the disease while simultaneously expressing the particulars and experiences of living with it. A very difficult task in writing and you achieve it with seeming ease. I look forward to hearing about what you have learned, and if you can at all recount the information exchange you had with your doctor, I'd love to read it. I couldn't believe my eyes, when I read about 17 of 21 patients experiencing a total remission as a result of stem cell injections. Qualifying my knowledge of the disease would help put these progresses into a greater perspective. Once again, I feel incrediably lucky to have found your blog. Thank you again.

  6. Hi Marc,
    Have you heard back any thing yet from NIH, hope you get some answers soon. I went to see Dr. Kerr this month at JH hoping he would consider me for the HYC program. At this point he things that I am PP and not sure any benefit would come from it. I'll try to post again with more info. Love your videows and your insight. I'm the one that has a place in the Colesium building, I emailed you before. Good luck with this new adventure. Patti