Ohio

[hollie]

OK... I haven't been on for a while. I've been trying not to focus on POTSY stuff (even though it hasn't worked on getting my mind off things).

Anyway... I've been having a real hard time lately. I wont bore you with details cuz we've all heard them before. But I have to say that I've been feeling SO COMPLETELY USELESS in every way. I finally have made some friends that understand my crap - so that's good. But everything else is falling apart and I can't seem to do anything anymore. I can't seem to get out of my slump. Plus I'm getting so crabby at everyone all the time and more and more "out of it".

My family is trying to convince me to go to Ohio. I've already seen another highly known dr and had no answers from him. I don't really see what going to Ohio would do for me. I feel like he would just blow me off like everyone else has. I need to know what luck others have had there... thoughts... feelings... experiences. Please PM me because it will probably not be allowed on the site (for legal reasons).

Thanks in advance!

Hollie

[Rachel]

Is there a specific place in Ohio you are considring going to? I have been to Dr. Grubb in Toledo. He was very kind and very knowledgeable. I have also been to the Cleveland Clinic, but I saw a mito specialist. I didn't go there for any autonomic doctors or testing. I have heard good things from others about Cleveland Clinic and the dysautonomia doctors there.

Sometimes it can be helpful to get an opinion from another specialist, but of course there isn't any guarantee for answers or a better treatment.

I hope you can come to the decision that is best for you.

Rachel

[hollie]

Yes, I'm thinking Dr. Grubb. I've heard such wonderful things about him. Problem is long term care. I've been seeing my dr here once a month for over a year. I would never be able to do that with him... I'm just so sick of being sick and am willing to try anything - I'm sure you all know...

Hollie

[Elegiamore]

Hollie,

So sorry you have having such a hard time. I am a patient in the Syncope Department at the Cleveland Clinic and from my experience, that is where you go at the Clinic for help. I got good diagnosis from them, but just the same run of the mill advice for treatment.

Which makes me think that there is just not so much we can do, depending on your type of POTS.

But like you, I'm failing and I want more help. I called up to Dr. Grubbs and I was told that I should send up all my personal info and he will then call me a month before he has an opening for an appointment and of course, I would have to take that appointment. Has anyone else been told this?

How can my husband get off work to take me with only one month's notice? I have never heard of this before. Usually you just make an appointment for six or months out to see an expert.

I am presently being treated by Dr. Charles Lapp in Charlotte, NC, who has treated CFS for two decades and has learned to treat and test for POTS, as a large percentage of his CFS patients have it. He is the most patient and understanding doctor I've ever met and has helped me this week get an emergency IV that my local doctors refused to give me. Only his partner, Dr. Black, is on our physician list...I don't know why he's not on it, as he has many years more of experience with this that Dr. Black (who is good also).

I find that the biggest problem with heading out to more than one POTS specialist around the country is the travel. I am sick for a month or more if I get on a plane. Driving from Georgia to Toledo would take at least two days of not being able to stretch my legs, etc. I had this problem with the Cleveland Clinic and had to be hospitalized as soon as I got off the plane from the two hour flight.

Good luck and keep reading and learning. In the end, those of us with orphan diseases need to take care of ourselves.