trice125

I loose my hair too when my symptoms are flared up but my dermatologist has told me that it's just a stress response from my body and all of it plus more will come back once my symptoms settle down (and it always does).

I adopted a puppy for our local humane society at 6 weeks old and he has naturally become my own service dog without any training. He's great for emotional support and watching over me when my symptoms are flared up.

My GI doc said that reflux can cause that sensation.

I also have severe tension headaches on an almost daily basis and would love any suggestions you get on this post.

I went gluten free for 6 months last year but I didn't have any changes in my symptoms.

How long before you started noticing a difference with salt loading and/or Mestinon? I started salt loading with drinking 1 liter of Gatorade a day along with adding more salt into my diet 2 weeks ago. I also started taking 60mg of Mestinon twice a day Monday and will increase it each week until I get to 60mg three times a day. This is all new to me though so I'm interested in others experiences with these treatments and how long it normally takes to see a difference with them.

Yes but I haven't been able to associate it any foods, it happens with no rhyme or reason.

How long before you started noticing a difference with salt loading and/or Mestinon? I started salt loading with drinking 1 liter of Gatorade a day along with adding more salt into my diet 2 weeks ago. I also started taking 60mg of Mestinon once a day last Monday and will increase it each week until I get to 60mg three times a day. This is all new to me though so I'm interested in others experiences with these treatments and how long it normally takes to see a difference with them.

Krissy21- I know how you are feeling. I'm only 26 and tried to do the whole living in the dorms thing while in college but my illness just made it too hard. Luckily my college wasn't too far to drive back and forth each day and staying home allowed me to have family support. My opinion is that you may not get answers that day, he told me directly that he likes to have the whole picture before he makes any suggestions, recommendations, etc. and some of the tests have to be sent out or at least this is what I was told.

I went to the cleveland clinic the week before Christmas for dysautonomia. Originally I was scheduled for 4 tests (tilt table- abnormal only because of my high heart rate, hemodynamics- more on this later, QSART-normal, and EKG- abnormal due to being on digoxin which Dr. J took me off of that day). I ended up being there three days because after Dr. Jeager saw/talked to me he decided to add more tests (echo, stress echo, 30 day heart monitor, lots and lots of blood tests plus one more autonomic test that I can't think of the name of) and consults with doctors (neurology- very little help and GI- no help at all). I also go back at the end of February for more testing (mainly the hemodynamics test since it's supposed to give them a lot of information which they were unable to when I was there the first time because they couldn't get a big enough IV in my arm) and I also have a follow up appointment with Dr. Jeager. We are planning on staying the the hilton garden inn this time around because their rooms are a lot bigger and nicer and their shuttle runs every hour. I only saw Dr. Jaeger on the first day (during which I spent double the amount of time with his nurse than himself) and then I had testing and other appts during the rest of the time there. I was told that he would send me a copy of his report once he got back all of the test results (which took extra time since I had to do a 30 day heart monitor). Once I did finally get his report very little of it made any sense to me. I did not get an "a-ha" moment and my PCP did not either after reading the report in front of me. I mean they did find stuff but that just created more questions that answers. The report did suggest some lifestyle things I can do and some medications we can try though. My mom and I are hoping to get more clarity when I have my follow up appt at the end of February.

I would apply as soon as possible because the process takes forever and you can work on collecting more documentation while you are waiting. As for not having the money to get a lawyer to help you with your claim, that's a non-issue because legally they don't get paid unless you win your case and then they only get part of your backpay. I didn't get a lawyer until I had been declined the first time but I know of people who got one before they even applied the first time so it's a personal decision. Feel free to send me a message if you have more specific questions, I'm more than willing to help.

He did refer me to neuro but he couldn't get me in to see one that specializes in autonomic dysfunction so I ended up seeing a different one who called me yesterday to tell me that most of my autonomic tests came back normal. She wants to start me on mestonin but my local GI doctor just started me on linzess Monday so I have to wait a couple of weeks before starting the mestonin to give my body time to adjust.

I have autonomic dysfunction and I went to see Dr. Jaeger the week before Christmas. I had three days of testing and consults with GI and nuero but they were unable to do the Hemodynamic testing due to the fact that they were unable to get a good enough IV access. I have been given access to the blood results but otherwise I haven't been told anything besides that Dr. Jaeger and the neurologist want to wait to make any conclusions and/or recommendations until they have all of the testing back (the GI I saw was a joke and I still have one more week left on the 30 day heart monitor). Dr. Jaeger's secretary called me yesterday though to make me aware that Dr. Jaeger was already trying to set up another visit for me to come see him again and to do more testing including the Hemodynamics. Dr. Jaeger gave me handouts about resources and the testing he ordered but otherwise I wasn't given anymore info so I'm quite confused.

I'm interested in hearing about other people's experiences at the Cleveland Clinic especially if you have seen Dr. Jaeger.