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Tom Trajectory

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Everything posted by Tom Trajectory

  1. Hi All. I was the potential leper who chimed-in a short time back. I've spent the past 8 days in the hospital due to increased numbness and paralysis of my left arm and right leg. My new neurologist was incensed that two other doctors diagnosed my case as leprosy (Hansen's Disease), and he exclaimed that conduction blocks of the nerves do not happen in leprosy. To make a long story short, I went through a series of tests this past week, and I have been diagnosed with CIDP, and in particular a subtype known as Lewis-Sumner Syndrome. Although CIDP and MS are different, they are both demyelinating conditions; and perhaps this prompts further consideration of Mle's (the OP) query about cluster headaches and demyelinating auto-immune diseases. I'm not suggesting a connection, but I do want to make others aware that something such as CIDP exists, for whatever that is worth. Leprosy would have been a more interesting diagnosis while chatting at cocktail parties, but the bland abbreviation "CIDP" provides me a diagnosis and a somewhat navigable route for battle and recovery. Allow me to close by saying that I do not blame the two dermatologists for suggesting my condition was leprosy; I'm in India, and when patients in this country present these kind of symptoms, leprosy is always the first consideration. One doctor told me that we should be hopeful that it is leprosy, as it is completely curable--otherwise it is some form of polyneuropathy, meaning that we are in nebulous territory. Perhaps some of you identify with me in the sense that I always want to attach cluster headaches to other symptoms in life, and thereby knock them all out with a single stone; i want to be able to say CH is bundled and fully connected with everything else and in that manner find some superstitious panacea. I even stopped wearing red shirts for a while because on three occasions I had cluster headaches while wearing that color. I know that's irrational magical thinking, but cluster headaches aren't applauded for their ability to promote lucidity and reason. -Carl
  2. I've had cluster headaches since 1998, and in recent months I have started to present symptoms of MS. My left hand is paralyzed, and now it is in my right leg. I'm from the US, but I've lived in India on and off for the past 22 years. My symptoms are also indicative of Hansen's Disease, aka leprosy; my biopsy will be returned tomorrow. Three doctors that I see have told me leprosy will be the best diagnosis for me, as it is curable. Otherwise, it is some kind of neuropathy or MS, conditions that are much more grievous. In any event, the three doctors I see (two neurologists and a dermatologist) confirm coincidence of MS with cluster headache patients. The other reason I post this is because during this situation I have been disturbed by the lack of support groups for people with leprosy--whether I have the disease or not, I have not found any support online, and the internet is filled with misinformation about the disease.
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