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What Do I Do Now?


Angelika_23
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I am so down. I called today to check on the status of my appointment, only to find out that the Mayo clinic declined to offer me one. I don't know what I am going to do. I have been counting on this so much!

The neuro didn't even call to tell me! I tried to call them, but they are gone for the day. I will have to try them on Monday.

I can't do this indefinitely! I need some validation, a real diagnosis. They told me I don't have POTS, but I most likely do have autonomic dysfunction, but they said they can't help me here in Cincinnati.

:(

Angela

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OMG! I am SO sorry. You must be devastated.

KEep looking. You will find somewhere and someone who understands and is able to diagnose your symptoms.

I feel so disappointed for you - I can only imagine how you are feeling.

Don't give up hope.

Don't ever give up hope!

Dari

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I remember how hard it was waiting for my appointment offer from Mayo. I'm sorry you had to go through that and then get turned down.

I don't know if you're willing to go to Tennessee, but if you were willing to go to Minnesota, I'd guess you might be. There is an Autonomic Disorders clinic at Vanderbilt in Nashville. I've heard great things about them. Maybe you could try there. Good luck!!!

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Angela,

That stinks! But please keep in mind that you don't necessarily have to go to Mayo or some other big place to get a diagnosis. I was diagnosed right here in podunk Sioux Falls, South Dakota, which just happens to have an autonomic testing lab at one of the local hospitals. It seems a little silly that they can't help you in Cincinnati. It's a big place!

Amy

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Angela,

I'm so sorry. It is hard and frustrating when you get rejected by doctors. I've been there too. Keep trying and keep pushing your case. As Emily once told me, "The squeaky wheel gets the grease!" You can definitely try to get in to Mayo again. Re-apply as Ernie said. Also, there is an autonomic center at Vanderbilt. You could ask your doctor to try to refer you to the outpatient clinic there.

I hope you can find a good doctor soon.

Best wishes,

Rachel

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Four years ago when I was having other problems, I couldn't get an appointment at mayo. BUT, you always have the option of going as a walk-in. I believe I had to wait maybe 2-3 days before seeing someone in internal medicine, who then arranged for me to see the appropriate specialists. The whole thing took about ten days. It was winter, so wait times in Minnesota are shorter.

There were things I liked about Mayo and things I didn't. It was a well run system and the doctors spent a lot of time with me. This was before my eds or autonomic issues emerged as culprits-- and no one picked up on them. The really good thing that came out of it was their recommendation of a chronic pain management program for terrible back and neck pain.

The bad thing was that they ended up attributing some of my unexplained symptoms to "stress"--intermittent one-sided weakness and numbness, strange blurred vision. (Even at Mayo, the "hysterical female" diagnosis reared its ugly head. Grrrrr.) With hindsight, I think I was having eds and hemiplegic migraine symptoms. Since both of those are unusual and are often diagnoses of exclusion, they never considered them. But I do admit that I'm not in a big hurry to go back there, with the "crazy until proven sick" approach that I ended up with.

I don't know that doctors always realize the damage that gets done when telling patients it's "in their heads." Why not just say that they can't yet find a cause through conventional testing, so some things can't yet be explained, but that nothing clearly physiologically dangerous appears to be going on? I totally buy that being stressed can make things worse and harder to manage, but every time I've been given a psychological diagnosis for a physical symptom, we eventually found a physiological cause. and every time, I felt somewhat scarred from having to have the "headcase" label affixed.

Does anyone know how frequently psychological stuff really manifests physically? Often enough to warrant all the two-bit (sorry) shrinky diagnoses so many of us have had thrown our way? It always seems like a last ditch, desperate effort, that does long-term damage. Don't get me wrong--I'm a big believer in psychotherapy--but even my therapist at the time thought the "stress" diagnosis was bogus.

Anyway-- I just totally went off on a tangent. The upshot is that there are other ways of getting to Mayo.

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Cleveland also has a few autonomic specialists, or you could try to get in to see Dr. Grubb in Toledo at MUO.

Nina

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Angela, I was rejected from Mayo, Vandy, and NIH. It was a few years ago, and at the time I felt my world had come to an end. It didn't and after a bit, you just move forward. Sometimes the doctors you think are going to save the world and your life, aren't and don't.

I have struggled for many years, but today I truly don't feel that spending the money to go would have changed the course my life has taken. There are other doctors out there and they don't have to be someone "famous" to help you. They just have to believe in you and be open to new ideas. If I can find a few, I truly believe anyone can. I still get frustrated, but I don't believe I would physically feel any different, had I spent all that money and time.

I was just rejected by yet another doctor in New York, for a sort of unrelated problem, and I was upset for a few days, but then realized it was his loss, and his insecurities that were the problem, not me. I sent him a letter telling him that , in my own unique way. :)

Allow yourself time to grieve and then move on....things will happen as they are meant to. good luck sweetie, morgan

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to be honest with you, I personally did not find mayo clinic all that great - I was quite despondent actually after i left mayo clinic, because i didnt feel they really did anything to help me....

i know there are people here that have probably been helped by mayo, but in my opinion, it's not worth the tears. i think you'd find more help/insight in going to blair grubb, but once again, this is just my experience/opinion.

also, i did not know that mayo clinic was allowed to reject patients?? or any medical facility for that matter........strange....

take care and dont give up girl, you'll get the help you need. look into blair grubb.

cardiactec.

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Hi,

I am sorry to hear that you were turned down by Mayo. But don't give up there are other places out there that are just as good if not better. However, I would definetely call Mayo on Monday and ask why you were turned down. Maybe it was for something that you could take care of and then get your appt. I'm new to this site so I don't know what your symptoms are or what tests you have had, or even what kind of doctors you have seen. This may make the difference in whether they will see you. I know it doesn't seem fair, but with these big institutions they want to know that you have done and been everywhere else before they see you.

If you can't get into Mayo there are two other big Autonomic Centers in the US. There is the one in Cleveland Ohio and then there is Vanderbilt. I went to Vanderbilt and they were great I cannot say enough good about them. However, I had to be prequalified by the doctor to get an appt. there too. But maybe they will see you there. But if not then maybe you need to start in your home state and get what is needed to qualify to get into one of these places. I can tell you that I live over a hundred miles away from any major medical centers. So, I started out by going to my local country doctor who then sent me to a cardiologist in Chicago (over 100 miles from my home). I then was sent to an electrophysiologist cardiologist in Chicago. This type of a cardiologist is the type of doctor that does the tilt table test and other autonomic testing. And evey big city hospital has a team of these doctors on staff. These are the doctors that specialize in HR and pace makers, so they are in all big hospitals. But they are the ones to do the tests you may need, and then you can get the referral and documentation you need to get into one of the big Autonomic Centers.

I can tell you that it took me 7 months to go from my local country doctor to getting my appt. at Vanderbilt. It felt like forever, but it was the road I had to travel to get the help I needed. And if you haven't had the testing then maybe you need to start there, because maybe you have something other then autonomic problems going on, which maybe in your favor. Because maybe this is something that can be fixed alot easier then dealing with some form of autonomic dysfunction. It is not hard to get the right testing, if your doctor was willing to get you the referral to mayo then ask them to refer you to a hospital that can do the testing needed. Your doctor will have that information and be able to get you the appt. needed.

I hope you get what you need, because I know it is very hard not knowing what is going on in your body. It is also hard when you have a ton of questions and no doctors around that have the knowledge to answer them. But don't give up, you'll get there.

Best wishes, Joline

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Stay strong, Angelika! DISTRACT yourself this weekend (NO easy feat I know especially with your FAMILY counting on the health coverage thru your job!)

I sent you a PM. It's early yet for you...Also I have heard some good things about Cleveland but it depends on the doctor. I have heard good things of a doctor's who name starts with C but can't remember exactly now.

Take a deep breath and STAY IN THE SHADE or inside. Geez.

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Have you decided what you're going to do? I've been thinking about you.

I just wanted to say that I didn't go to Mayo for POTS. I probably wouldn't have gotten in for that anyway. I have a mass inside my spinal cord that we thought might be a spinal cord tumor. Since they don't see that many of those, they got me in in under three weeks. It ended up being something called Transverse Myelitis, and my case isn't that bad. (Thank God!) But while I was there, I was told by my neuro that I was getting the exact right treatment for my POTS, and he wouldn't change a thing.

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I am still upset.

Today, I had a bad episode at work and my husband had to bring me home. I feel awful.

The neuro FINALLY called me back a little bit ago, didn't know anything about the denial, I had to read the letter to them, then they said that they can't/won't do anything until I come back in again. The can't get me in for several weeks. I wanted to cry. I told them that is NOT okay, and I am feeling bad NOW.

I asked for a referral to Dr. Grubb, they said no, no referrals or even follow up to find out why Mayo declined me until I come back into the office. :) It is so easy for them to say NO.

So, I am going to drag myself into my PCP tomorrow, even though I detest him, and ask him for a referral to someone, anyone. It isn't likely that he'll help, he's the one who said there is nothing wrong with me that medication and counseling won't fix. :) But I'm desperate, so I'll try it.

Angela

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I'm so sorry Angela.

I just can't believe the run around your getting. Like Ernie said, try again if you can get that PCP of yours to bend a little, and give you a referral. Sometimes it works.

Don't they realize that THEY---(the dismissive docs) will cause any kind of psychological problems because some of them persistantly tell us that it's in our minds when we truly feel very physically ill, and we are desparate for help to feel better.

If this happens enough, it's a good possibility anyone would end up crazy.

I hope you find some help soon.

Nina------Dr. Grubb works at what is now known as : UT Medical Center/University of Toledo Medical Center.

MUO has merged with the University of Toledo. :) It's still the same campus and address, but it's just now part of The University of Toledo.

BIG HUGS,

Maxine :0)

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Honestly after all the mixed reviews I've read here on Mayo I decided I didn't even want to apply there. I had my tilt done at my local hospital and I was so discouraged by the lack of help I got and the way I was blown off by drs. because it was not "life threatening" I was devistated too. After being "rejected" at UCLA, actually they offered me an appointment in the resident clinic NOT with the doctor I requested... I had ENOUGH. So I just called Dr. Grubb's office and made an appointment. It took a year to see him but it was 110% worth the wait. He diagnosed POTS from the test results I brought with and got me treated. The best part of going to see him was that he was able to refer me to a cardiologist in California who I never would have found on my own. She is awesome too and she has spent a lot of time at Vanderbilt. I feel like between her and Dr. Grubb I now have access to what I need. Maybe if you start by seeing someone else they might be able to get you in to someplace like Vanderbilt if you need that?

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Wishing you luck on your search. I'm starting to dislike most doctors myself. They just blow you off like your pain/symptoms don't mean anything. If it wasn't for my PCP and my cardio I think I would have gone postal on some of them by now. No pun intended for those that might be a postal worker. I hope you find the doctor you need.

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The way the referral thing was explained to me by Grubb's office is that they just want to be sure that they will get your records. They said with all the patient privacy issues now they had problems getting records. I told my first Cardio who had reached the end of her rope with me that I had ggod news, found an expert who could help me and I needed a referral stating she would get him my records. It wasn't an option for her to say no, and I was paying out of my own pocket so why would she not give me a referral. Don't look at the referral as something your doctor has contol over, just state to your current dr./his office "this is what I want to do next, and this is what I need from you to help me"...

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Thanks for the advice, I will do just that.

I just called Dr. Grubb's office, and they are booked solid until next June. :) By then, I may not have a job OR insurance. So, even if my PCP will do this for me, I still have a nine month wait. This week has just been an avalanche of bad news.

I am home today, my HR is at 130 just being still. So uncomfortable!

Thanks everyone

Angela

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I have an AWESOME doctor if you're willing to drive to Bowling Green, KY. He's an autonomic specialist, and he has completely changed my life! He has a tilt table and all the other equipment in his office. Send me a message if you want to know more. :)

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