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Old 10-24-2009, 07:08 AM   #1
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Join Date: Mar 2009
Location: Silver Spring, MD
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Monnie45 HB User
lots of questions

Hi, I have not written for awhile, still trying to accept a diagnosis of MD2. Let me tell you my story. Three times in my life I have had problems with vertigo, the room did not spin but I felt like I was on a boat with no firm diagnosis the first two times. It would finally subside. The last time it happened I was diagnosed with Meniereís Disease, an inflammation of the middle ear. It left me with a feeling of unstableness. I have also complained about a tightness in my lower forehead, base of my nose. Well, the ENT said that could be from the Meniereís because my eyes are fighting the disease, not sure I bought that. I was put on HCTZ for both the Meniereís and high blood pressure. It seemed to help but left me with an almost constant feeling of lightheadedness. I actually cut back on the HCTZ and it seems to have helped. By the way, when I complained of the tightness my internist sent me for an MRI and I was diagnosed with mild chronic sinusitis in my maxillary sinuses. OK, now onto MD2. My doctor noticed a high CPK of around 700 and sent me to see a rhumatologist to see why. I found out that my brother was going to the same group for the same reason. Well, after a series of tests including a genetic test I was diagnosed with MD2. My symptoms have not been life altering yet. I have difficulty climbing stairs, cannot run, cannot lift myself from a stoop but generally it doesnít interfere. I am 64 years old. My father had MD2, it was never diagnosed and he didnít seem to develop much in the way of symptoms until later in life, about 70. Is it possible that the MD2 will never be a problem or am I too optimistic? Anyway, I wish I could tell you a feel great but I donít. I always seem to feel a little unsteady, my forehead always seems a bit tight and I am tired. I do still work full time, though. I leave the house around 7 every weekday, get home after 6 and honestly I am exhausted. I check my mail, prepare a light dinner and make sure I have lunch for the next day and climb into bed. I get out on the weekends but sometimes would rather stay in bed watching TV. By around 8 the lights are off and I am up again at 6. Why do I not feel great, is it the MD2, the Meniereís, sinuses, medications? Any thoughts? Oh, by the way, the rhumatologist also suggested the tightness I feel could be related to the MD2.

Marlene

 
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