shelleynshaggy
Distinguished member
- Joined
- Sep 2, 2009
- Messages
- 280
- Diagnosis
- 08/2009
- Country
- US
- State
- OH
- City
- Brunswick
Jim went for his tilt table test - which was of course abnormal. He does have ortheostatic hypertension (he is hypertensive when lying down and hypotensive when standing up.) And the tests showed he has autonomic neuropathy. The neuro had suspected this before sending him for the test and had already said their is little we can do. I have already tried to increase his salt intake and I try to make sure he drinks at least 1 bottle of gaterade a day to help with his electrolytes. Any one else have experience with this?
Overall I thought Jim handled the tilt table test very well. He did pass out for about 30 seconds during one of the breathing exercises. I was watching my daughter when the tech says "we lost him there for a bit." I was in the room with him and he was groggy for a few minutes but said he felt fine. They continued the test.
SO - I get the results back and find out - ya- they really did lose him there - he was in asystole for about 15 seconds (heart stopped)! The ALS clinic calls me and tells me all the experts are now having a pow-wow to figure out what, if any, steps they will take next. Possibly a cardiology visit. I should hopefully know by Monday.
I also faxed the results to the FTD neuro and figured I would get his brain in on the next step. Cleveland Clinic seems to have a lot of specialists on the ALS team - but apparently no cardiologists so I think they are trying to find someone with understanding of the disease. WHO KNOWS! I have been waiting to update his blog until I get a few more answers. The last thing I need to do is worry more family members when I don't have answers right now. I hope to let them all know once I find out the next step. All I need is for them to be all putting their two cents in!
I knew I could vent here - thank!
Overall I thought Jim handled the tilt table test very well. He did pass out for about 30 seconds during one of the breathing exercises. I was watching my daughter when the tech says "we lost him there for a bit." I was in the room with him and he was groggy for a few minutes but said he felt fine. They continued the test.
SO - I get the results back and find out - ya- they really did lose him there - he was in asystole for about 15 seconds (heart stopped)! The ALS clinic calls me and tells me all the experts are now having a pow-wow to figure out what, if any, steps they will take next. Possibly a cardiology visit. I should hopefully know by Monday.
I also faxed the results to the FTD neuro and figured I would get his brain in on the next step. Cleveland Clinic seems to have a lot of specialists on the ALS team - but apparently no cardiologists so I think they are trying to find someone with understanding of the disease. WHO KNOWS! I have been waiting to update his blog until I get a few more answers. The last thing I need to do is worry more family members when I don't have answers right now. I hope to let them all know once I find out the next step. All I need is for them to be all putting their two cents in!
I knew I could vent here - thank!
