April 24, 2008

I had my 9 month check-up with Dr. Kerr. He said my walking has improved from my six month check-up. My balance is better and I was able to do the tandem/tightrope walk for the first time. In the past, I would tip over and look very uncoordinated trying to walk heel to toe. Now, I am better at it. Dr. Kerr also had encouraging data from other HiCy patients who showed improvements up to 4 years after treatment!

It is great to hear a brilliant neurologist and researcher say that one can continue to reverse the MS Damage. My homework is to continue working out at the gym and to push myself to increase my walking distance/duration. I will also use every one of the physical therapy appointments that my insurance company has approved. I was given 2 per week for 4 months. My PT has helped me compensate for past MS Damage by working on balance and gait exercises. Dr. Kerr also told me that there is much more interest in HiCy and they are gearing up to see more MS patients and help other clinics/hospitals to use the protocol too. I said that I hope it will be given to patients earlier in the disease to "shut it off" so they don't have to go through as much as I did to get here. Dr. Kerr agreed that it should be offered earlier. I was happy to learn that MS patients that had read my Blog have scheduled appointments to be evaluated at Johns Hopkins. It is my sincere wish that this treatment will continue to bring recovery and inspire new hope for a brighter future to other MS patients.

January 16,2008

I had my 6 month follow-up with Dr. Kerr today. Things are continuing to improve. Just like at my three month post HiCy visit, the MRIs revealed NO NEW LESIONS AND NO ENHANCEMENT!!!

My EDSS (expanded disability systems scale) scores are also looking better. Before the HiCy, I had an EDSS of 5. At 3 months post HiCy, my EDSS was 3.5. Today Dr. Hammond told me it had dropped to 2.5! My reflexes and physical tests improved again. Also, my walking is better. Working out at the gym with a personal trainer has really helped me to strengthen my muscles. I still have some pain and "pins and needles" in my feet that I've had for years. Dr. Kerr gave me advice about reprogramming my muscles by practicing walking on different surfaces (indoors and outdoors / even and uneven) in order to continue to improve. He and Dr. Hammond spoke quite positively about my progress and were very encouraging about my future. The fear and hopelessness that I felt last winter is now gone.

I am so grateful to Dr. Hammond, Dr. Kerr and Dr. Brodsky for letting me do the HiCy protocol. My original goal was to stop the rapid progression of the (MS) disease. I seriously thought that lowering my EDSS score would be wonderful, but hard to fathom. It amazes me to be examined and to see and hear that things are actually better! At 46, I know I won't feel like I'm 20 again, but at least I don't feel like I'm 90 anymore either.

The best thing of all is that I have HOPE for the future.

August 6, 2007

Kayaking at the cottage in Maine and water aerobics in my home pool have made me feel better. Those were both great forms of aerobic exercise that were easy enough for me to do to get my endorphin level up. When it's raining, my back-up is my treadmill, but I don't like it as much. My new goal is to go to the gym 3 times per week.

July 26, 2007

Dr. Kerr and Dr. Zorn switched me to 75 mg Lyrica BID, instead of Neurontin 800mg TID. It seems to be working better for me. Now I don't wake up in the middle of the night needing more pain meds to sleep.

7/21/07

I had a series of blood tests done today. It will be interesting to hear what Dr. Kerr has to say about the results.

July 17 2007

I went to the gym for the first time today. It felt so good to do a workout.

June 18, 2007

Dr. Brodsky switched me to the anti-biotic Dapsone to take Monday, Wednesday and Friday for 2 months instead of Bactrim. I tried my first dose and did not have any side effects. Also, I called to schedule my 3 month follow-up with Dr. Kerr for late September. Dr. Hammond will mail me the list of follow-up tests to do locally and the long term protocol follow-up schedule so I'll know what to plan for. Also (as an FYI for future patients), I did not lose 100% of the hair on my head maybe because I had very thick hair to start with. As a result, I can do a Donald-style comb-over and have little bangs to show under a hat. Plus I have a bit of hair in front of my ears and the lowest part behind my head, and with a hat, I can be more comfortable without a wig. So, the free hair buzz (to baldness) that is offered at the Image Recovery Center may not be so helpful in the long run. My lint roller kept up with the very quick hair loss that only lasted 5 days.

I got a delivery of hats and a gorgeous wig from the American Cancer Society's TLC Catalog. The wig is better looking than my original hair was and it doesn't frizz in the summer heat.