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Gitlemans Syndrome
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An_249327 posted:
Hello all, I am new to this board. I was just diagnosed with Gitlemans Syndrome last week by a hospital Nephrologyst. To give a slight timeline, I experienced some slight mucle pain and weakness in my arms and legs on the previous Thursday and Friday, By Saturday the weekness had gotten so bad that I was barely able to drive and had to rely on my cruise control and when that wasn't possible had to pull on my pants leg with my hands to lift my foot from the gas over to the brake etc. Yes, looking back I should have pressed the Onstar button and called for help, but I made it home and into bed. The next morning I could barely walk, barely lifting my feet at all. By that evening I was carwling until I loss all strength in my arms. Then I relied on a friend to drag me around because insisted I would be better by morning and I had to work. The next morning it was clear that I would not be working that day. Luckily, I had someone in the house with me, if not for that, I could easily have layed there and died.

An ambulance was called and when I arrived at the hospital, blood was taken and they noticed immediatley that my pottassium level was only 2.0 so I was immediatley given an I.V. of pottassium which is not a comfortable dfrug to have dripping into your veins. It tooks several days and many more Pottassium I.V.'s as well as oral supplements to get my pottassium levels anywhere to even a near normal level.

The Nephrologist came in and said he was ready to give me his diagnosis of Gitlemans Syndrome. He said I would likley need to have my blooed checked every 2 weeks or so and to be preparred to go in for I.V. supplements when needed.

It was noce to have a diagnoses but when I reached for my laptop, I found very little helpfull information on Gitlemans Syndrome. I checked with my sister who is a 30 year medical research coordinator and she was not familiar with it and she asked her employer who is an M.D. and was met with the same response. I went to my primary care physician today to follow up and he had never heard of it either..

I was supposed to have a follow up appointment with the Nephologist that diagnosed me some time this week but I have not been able to reach him or even get him to return my calls.

Thankfully, I have an excellent primary care doctor who ordered a full blood workup while I was there today and sent it to the lab with orders for them to contact him ASAP if there were any numbers to be concerned about. The doctor said he would call be me right away if he heard anything that was cause for concern and tomorrow is Saturday.

For anyone else that suffers from this illness, are the sore muscles the main thing to indicate that an episode is coming on or are there any true warning signs?

I'm just trying to figure out what I am really in for, I'm 49 years old... will be 50 in February if I make it that long....

So sorry for my long rant... I just wanted to give a detailed description of what happened to me. Wondered if others have had similiar situations. Happy Holidays!
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