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Is A Specialist Or A Referral To A Clinic Needed?


Hoosierfan
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I'm in a situation where I have been diagnosed with chronic hypotension, usually under control (and no side effects) on 75 mg Effexor. Due to a SNAFU last year, I was put on the generic of Effexor, and PCP added all sorts of other meds to counteract breakthrough hypotension and other nasty side effects of the generic.

We've been trying to get me back to 100% function for 15 months now. I'm back on my 75 mg name brand, .075 florinef (down from .15) and a minor dose of Klonopin (down from .5). I'm still very limited in my ability to work and function on a daily basis -- PCP thinks it is side effects from the Florinef and Klonopin.

My question is, how much longer do I give my PCP and my "occassionally seen" cardiologist to get me back to functioning? The plan is to taper off the Florinef and Klonopin over the next 2-3 months. I'm just scared that we'll get to June, I'll still be feeling funky, and only then realize that I should get into a specialist....and then I'll call and they'll say "see you in 3 months!"

The cardiologist I see every 6 months or so usually just checks me and says "well, your PCP and you are doing a good job....keep it up!" Um, ok. :(

There is one doctor who specializes in disautonomic disorders near me (in another cardiology practice). Wondering if I should make a prophylatic appt with him or with somewhere like Cleveland Clinic just in case this keeps going......

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I've been at this for 6 years. My suggestion is make that appt. with somewhere like the Cleveland Clinic. I spent 5 years seeing a doctor here and there, having them have me come back in 6 months or so. Next thing I knew, 6 years went by and I had had NO help. I am finally going to one of the big institutions and hoping they can solve some of this. Of course, there is no guarantee that even the big guys can do anything, but at least it's a try.

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For CC my cardio's secretary sent my records and a referral so I got an appointment that way. For Mayo, I went online and they had a place you could click and ask for an appointment. Apparently you can refer yourself to them...if your insurance will let you. When the scheduling people called me from Mayo they said they needed my records to get an appointment with the autonomic service so I faxed them over the next day and they called the following morning with an appointment time.

Probably wouldn't hurt to see another doc and get another opinion. Having seen docs at both of the big centers however, I'm still about where I was before...except I have better knowledge about my particular situation.

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It took my condition 2 1/2 yearrs to progress with cardiologist (mainly) and PCP (IM--somewhat) working on figuring things out. At that point they both recognized the POTS and my cardiologist referred me to cardiac specialist in dysautonomia. The wait list was year-long to see the doctor and my cardiologist insisted that I see the doctor (not the PA). By the time the cardiologist saw me in follow-up a few months later (end of summer), he'd seen what effects the summer had on me and picked up the phone and called the specialist's office (wanting either to see me--just see me). To our surprise, the cardiac specialist saw me himself--they called me within a week of seeing my cardiologist and scheduled me for about 2 weeks after that. What I learned, with me (OH, ANS failing), I should not have been trying to get down tending to my flower beds or trying to ride my bike, or being active outside when it was 90 degrees or higher or high humidity, or raise my arms above my heart level without anticipation of the BP plummeting. Had I known that in the spring, perhaps I would not have become so debilitated by the time I saw the specialist in Oct. My cardiologist had all my pertinent records and tests to fax to that specialist. No one knows your body better than you. I was being a patient patient and thought I might wither away and die before ever getting to be seen by a specialist. I had to undergo a good course of physical therapy (aquaciser treadmil) to recondition things. With winter following, I had fewer episodes in the cooler weather. I'm dreading the heat of the summer again. I go back to Toledo next month. It's about a 5 hour drive or so but so worth it to me. When I left my first appointment, I was overwhelmed. On the way home and for weeks following, I thought of so many questions. Now that I'm scheduled to go back, I can't remember the questions I'd wanted to ask. Figuring out the right combo of meds is the trickiest part with me (they've tried many but only 1 in combo--one of the combo meds I couldn't tolerate, so now I'm back to one).

I don't know your doctors but mine were only too happy to have expert opinion. I was only the second patient my cardiologist ever had to refer. I'm so glad he did. I was also new to my PCP (having EDS to boot) and of course the PCP defers anything cardiac wise to cardiologist. I wouldn't think your cardiologist or neurologist would be opposed to making referral. I would just say, in living through last summer, the worst of my life, don't wait too long. There are some wonderful specialists out there. Best wishes on your journey.

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We have taken my son to Case Western University Hospital in Cleveland (full autonomic lab there) and we have been to the Mayo Clinic for testing,etc., plus 3 week program at the Mayo to help him learn to live with this. We also see a local specialist who used to work in Cleveland. Honestly, my son is no better today than when he was diagnosed, worse actually. He has progressively gotten worse over the last 3 years. But, we have not given up trying to find help. So start either with the local autonomic specialist or go to a facility with a full autonomic lab. Just keep looking for help.

Christy

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