My Cover Letter To Nwu Re: Stem Cell/chemo
AnonymousNovember 30, 2008 at 11:23 am
November 29, 2008
To Whom it May Concern;
Firstly, thank you in advance for your time and for considering me for your trial.
My symptoms began early December 2007. I first noticed numbness in my toes. I also felt fatigued in general. Over the course of the next couple of weeks, my finger tips also became numb. I saw a doctor at my primary care office (not my regular doctor), and was subsequently referred to a neurologist.
January 2008, I saw Dr. Arnold Greenberg, a neurologist: 415-346-7505 – 2299 Post St, #206, San Francisco, CA. I was examined by Dr. Greenberg and had the following tests: chest x-ray, contrast MRI, CBC, NCV. Dr. Greenberg’s diagnosis was CIDP and he referred me to Dr. Jonathan Katz, a neuromuscular specialist at the The Neuromuscular Disease Care Center located within the Forbes Norris MDA/ALS Research Center located at 2324 Sacramento St., San Francisco, California 94115, Phone: (415) 600-3604.
Dr. Katz also diagnosed me with CIDP. Initially, my symptoms progressed mildly and slowly. Dr. Katz and I agreed to not treat the disease yet as we held hope that it may run its course on its own. Instead, Dr. Katz prescribed medications to manage pain. During the summer months of 2008, the progression of my illness increased quickly. Numbness was now from my buttocks to my feet and my whole hands. Further, I had constant pain, fatigue, weakness and imbalance.
In July 2008, Dr. Katz ordered IVIG. I did one five day loading dose in July and it made me significantly worse. I could not walk after the IVIG and all symptoms worsened. I had even lost the ability to always control my bowel movements. Subsequently, Dr. Katz stopped further IVIG treatment. I had more NCV’s and an EMG. I had definitely worsened. On August 1, 2008, I began high dose oral prednisone.
I enjoyed initial improvement from the prednisone. I gained enough strength to at least walk to the bathroom and hold myself up in a shower. My initial dose was 60 mg daily. Dr. Katz began lowering my dose over the months and I am currently on 25 mg daily. Even before the dose was lowered, the efficacy of the prednisone had either slowed significantly or had plateaued.
It should also be noted that I experienced and experience strong side effects from the prednisone and am anxious to wean off of it.
On November 11, 2008, I began Cyclosporine (325 mg daily) with the goal of continuing to reduce prednisone or even eliminating it completely.
After the first week of Cyclosporine, I noticed improvement; I was steadier on my feet and had more energy. I also experience more pain since taking Cyclosporine. Although there might still be incremental improvements, it too feels like it has plateaued some. Admittedly, it is difficult for me to discern whether the Cyclosporine/prednisone combination has plateaued, or if it is just the slow regeneration of my nerves that I am left with.
Undoubtedly I am better now than this past summer but I still cannot walk unassisted. I have constant pain and debilitating fatigue.
Regarding organ involvement, thus far I do not seem to have any specific problems. Regular CBC’s show nothing out of the ordinary except slightly elevated blood sugar, assumably from the prednisone. It should be noted that I have a very minor degree of Thalassemia; hence, CBC’s consistently show low readings in the red blood cell category.
I do not know if this is of medical interest to you but thought I should mention that I had a bout of Shingles across my back a month and a half prior to the onset of my CIDP symptoms. (I took Valtrex for one week for the shingles)
In regards to “flares” of my disease, these occur mildly after over exertion. But overall, I would characterize the progression of my disease as primarily steady; absent of remissions or major progression. Simply, I have better and worse days without much variance.
I see Dr. Katz in a few days. I will ask him to forward a letter to you. I will also gather my medical file and have that forwarded to you as well.
Cyclosporine 325 mg
Prednisone 25 mg (currently)
Cymbalta 60 mg (for pain)
Hydrocodone 7.5/750 mg x 2-4 (for pain)
Alendronate Sodium 70 mg per week
Omeprazole 20 mg (for stomach upset from Prednisone)
Clonazepam 2 mg (as needed for sleep, periodically)
Advair 100/50 (for mild asthma)
I would very much like to be considered for your clinical trial and appreciate your evaluation in this matter. Thank you again.
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