Hoosierfan Posted March 23, 2012 Report Share Posted March 23, 2012 Just wondering what the wait time for a consult & testing is. Right now my PCP's theory is that I'm just in a "medication nightmare" that has lasted the last 15 months, and we're tapering off Klonopin and Florinef to try and get me back to no "drunk" dizziness, energy levels back up, no headaches (that contribute to my "on a boat" feeling all day!) and no brain fog. PCP is 99% sure its the side effects from the Klonopin and Florinef, but I told her that I'd stick it out for 3 months to get off of them, if all the stuff didn't clear up I wanted a second opinion / consult at CC. I'm super sensitive to meds, so I do buy her theory that it is all side effects, but it also means we have to go slow because my MO when we go too fast off medications is my OH starts up again....Wondering when we need to make the decision to consult CC. Don't want to call them in June and have them say "we can get you in in 3 months!" Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted March 23, 2012 Report Share Posted March 23, 2012 Is that U. of Toledo with Dr. Blair Grubb or is there another in Ohio? If it is I called recently and it is a 12 month wait for Dr. Grubb and a 9 month wait for the cardiac NP PHD who works with him. Also Mayo-Rochester and Vanderbilt both told me 6-7 months if interested. Quote Link to comment Share on other sites More sharing options...
Hoosierfan Posted March 23, 2012 Author Report Share Posted March 23, 2012 I was thinking the dysautonomic and syncope clinic at Cleveland Clinic. Not sure if that is where Grubb is at or that is somewhere else. Quote Link to comment Share on other sites More sharing options...
JenLR Posted March 23, 2012 Report Share Posted March 23, 2012 I called the Cleveland Clinic in January and got an appointment in early April. Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 24, 2012 Report Share Posted March 24, 2012 In 2010, my doc talked about me going there in March but I don't think his office sent in the referral until late April. I was seen in mid June.You could always call and get an appointment and then cancel it if you get close and don't feel you need it. Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted March 25, 2012 Report Share Posted March 25, 2012 Dr. Grubb is at University of Toledo. I am not sure how long the wait is for Cleveland Clinic for a new patient. It seemed like when I called the first time, I got in within a month... But that was several years ago. If I were you I'd call now and find out the wait time, not wait until you decide you want to go and then call. There will most surely be some kind of wait. As someone else said, you can always make an appointment then cancel it later if you don't need it.Good luckAngela Quote Link to comment Share on other sites More sharing options...
LindaJoy Posted March 25, 2012 Report Share Posted March 25, 2012 I saw Dr. Fouad at CCF in 2005. I was amazed that I was able to see her in two weeks of my call. I'm not sure, but I had an endocrinologist there, and they asked if I had a doctor already at CCF. When I said yes, I have Dr. So and So, they said okay, set me up in two weeks, and put that doctor down as my referring doctor. She's in a new area there now, so maybe she's building up more of a clientele and the wait is longer. I lucked out, I guess. Yes, Dr. Grubb is in Toledo. I live in Ohio and have never seen him professionally for my POTS. I asked him to talk to our doctors at our hospital years ago, and I listened in and spoke with him afterwards, but have never had an appointment.I know this is all mud, but wanted to chime in with my experience. I hope you can get in within a reasonable time when you do decide to call.Lindajoy Quote Link to comment Share on other sites More sharing options...
Hoosierfan Posted March 25, 2012 Author Report Share Posted March 25, 2012 Thanks for the input. I may have my PCP get started on the referral. I'm just in a conundrum because my OH issues seem to be serotonin related (when I started Effexor they improved, when tried to taper off Effexor they started up again, and when I was on a generic they came back), but none of my docs can say "yes, that's it and you need X medication in Y amounts to manage it." My PCP is the best at it, but its a psychiatrist that prescribes the effexor and she says she has "no idea" how Effexor is used for OH / BP issues; I consulted a neuro who said "no idea, its the psych docs who prescribe the serotonin meds." (argh!). Same answer from my cardio. Never seen an endo.So, I like the idea of the CC to try and see a group of specialists (cardio, neuro, psychoneuro, and endocrinologist) who are familiar with OH issues, serotonin, and how it all interacts, and if I have any underlying deficiencies or I've just become so dependent on the meds after being on them so long that its the "withdrawal" that causes my OH (and it would go away). Quote Link to comment Share on other sites More sharing options...
mwise Posted March 26, 2012 Report Share Posted March 26, 2012 I would push for your PCP to get you a referral and appointment. He/she can usually get you in quicker with Cleveland Clinic than you calling on your own. I see Dr. Shields, Neurologist & Dr. Bhatt in with Dr. Fairbanks, GI Doctor at Cleveland Clinic. I know Dr. Fouad at Cleveland Clinic is for Cardiology and heard very good things. Once you are in with one of the doctors, they usually will help you get in to see the other doctors. If you are willing to see their NPs if they have one, you can get seen sooner. Good luck Quote Link to comment Share on other sites More sharing options...
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