20 Year Medical Mystery Of "hyperdynamic Autonomic Nervous System" Returns. Help With Dr's?

[Miqual]

Hi everyone. Started following this site recently after the re-emergence of a previously unsolved medical mystery that arose 20 years ago in my teens. I was diagnosed back then as having "hyperdynamic autonomic nervous condition relating to blood vessel control loss and hyperactive adrenal gland" but was told back then not much was known. I spend the best part of my high school years being shuttled amongst specialists and to Mayo twice before they gave that diagnosis, and after a trial of beta blockers not working, was told there was nothing they could do. It improved as puberty settled and I have run from it for 20 years, getting treated and diagnosed for a range of things including exertion migraines, atypical/unexplained chest pain, heart murmur, and even told for many years I was bipolar. After going under anesthetic for knee surgery over a year ago, everything returned but many times worse. I have a very confused family Dr. who I did not tell of the past problems when I took her on, and she's struggled to help me. She is convinced no conditions exist affecting nervous and vascular systems and keeps trying to say there is nothing she can do for me.

I found this site and literally broke down in tears in hearing everything I've experience symptom wise, everything I've gone through Dr struggle wise, and a long time mystery probably solved. The unexplained chest pains, headaches, issues in seated/standing position, dizziness/lightheadedness, heat and cold sensetivity, body temperature control issues, flushing, raging thirst and fluid requirements, night sweats, inability to sleep well, frequent urination, dark lower legs, swelling of feet/legs, shakiness, exhaustion. That's been my life!

So far I've convinced my Dr. to try Mayo and the New York Dysautonomia Center, but since she is disbelieving, I don't thinbk she's giving them the information needed to get them to take me on for an appointment. I've tried calling several of the specialists on the Dr. list here but all are telling me my Dr. has to refer me. Can anyone give me an idea of what they did to navigate past the roadblocking of their Dr? I was laid off my job of 17 years this summer and am using the last of my money to pay for my COBRA insurance, and that money is running out. If I dont get someone to see me soon, I will stay undiagnosed, untreated, and uninsured.

Thanks everyone. Your posts here have been keeping me going through this hard time, and looking forward to some input as well as being able to participate!!

[corina]

Hi Miqual, welcome to the forum! I'm sorry you're struggling so much esp. in convincing your doctor to refer you. Maybe you could print some info from our main pages and let her read it in the hope she'll go from there. Can't imagine how difficult it must be to have lost your job and not being able to get a diagnosis as to move on.

Wishing you all the best and again, glad you've found us!

[arizona girl]

Welcome! The validation of finding others that understand what we are dealing with is why I love this site so much. We are doing gods work here and we are at our best when we are helping each other.

Does your insurance require a referral? If that is the case then you may need you doctor to help, or you may need to find a new primary care that is more open to working with you. I know mayo sometimes requires a referral, but not always.

Do you have the records from your previous mayo visit stating that diagnosis? I would imagine mayo might still have those records. If they do then you may not need a new referral as you would be coming back as a followup patient. This field of medicine has come a long way since you were first diagnosed. Mayo now tests for autoimmune antibodies that can be causing the symptoms. Actually there are many different disease states that cause our symptoms. If you can find a doctor that does a skin biopsy test for autoimmune small fiber neuropathy that would help. Some one recently posted a list of neurologists around the country that might help, I think it was rich. Another member here is seeing a doc in the virgina area that is really good, that might be close enough to you. I forget the name though. Both of those posts were in the last two weeks.

Are you hoping to go back to work or are you considering disability? Remember that there is a stale date when filing for disability, so don't wait to long to get that process started it can take years and you have to apply in a timely manner to even be considered. Hang on to that insurance as long as you can or look into your local state insurance plan, who may cover you also. Don't let your insurance expire as then you will have trouble being covered for preexisting conditions.

Take care now! We are here to help.

[McBlonde]

Wow. Welcome! Your PCP was right about one thing. since "She is convinced no conditions exist affecting nervous and vascular systems and keeps trying to say there is nothing she can do for me" The last thing you need is a primary care doctor that is "disbelieving".... You deserve so much better! If she is not going try, she is not worth your time, energy or money.

Where are you located or how far can you travel? That would be helpful for us to help you. So sorry you are going through this!

[Christy_D]

My son's pediatrician also wasn't very helpful, so I would look for a doctors email address and email the doctor directly and skip any office staff. Once I would get through to the doctor, they agreed that he needed to be checked out and tested. Then the doctor usually in the email gave me a phone number to call to schedule an appointment. If the scheduler gave me grief, I just told her I have an email directly from the doctor telling me to schedule this appointment. But, our insurance doesn't require a referral, so that was a plus.

[Chaos]

I think there's a Dr. Abdallah (?) in the Virginia area that people have seen and liked. Hopefully some of them will chime in.

My insurance doesn't require a referral so I self-referred to Mayo on-line. When the scheduling people called me and I told them who I wanted to see, they said I had to send my records. My local docs' records would have been worthless in that area for the most part but luckily I'd been to Cleveland Clinic and had their records. I'm wondering though if you could just tell them you already had that diagnosis from Mayo in the past (they may or may not have your records from 20 years ago...I'm guessing probably not) but it might help them to get you in with them.

Otherwise like others have said, I'd be looking for a new GP. If they aren't willing to work with you, they're wasting both your time and money. I've learned that a doc doesn't have to know everything about the condition but they do have to be somewhat open minded to at least listening and reading some of the info I bring them or I won't bother seeing them again. Like Corina noted, this site has TONS of good info you can print and articles you can provide docs if they're receptive to the research you're willing to do for them.

Sorry you've had another flare of your symptoms. Glad you found the site and may have a possible explanation for your issues. It's a major relief to know you aren't crazy and other people are struggling with the same issues.

Hope you can get some help soon!

[diamondcut]

Ita so wrong we have to go through this for so many years when inexpensive, simple, cheap tests can dx POTs or EDS etc...... Treating it of course is a whole new ball game but to be told whats wrong AND believe it is priceless

If its any consolation Miqual, at least now you know your not crazy or alone!!

[Relax86]

Welcome...This forum helped to make me well. Well in the sense of functioning but not quite feeling like me. Well in the sense of knowing I'm sick and not crazy, well in the sense that of knowing I'm just sick and not dying. I have yet to really find the medical direction that I need - mostly due to being in SJersey and having no autonomic specialists near me. I do have a family doc who diagnosed me with POTs. He's a great guy and it's nice to have someone to believe me, but he has limited treatment and testing experience. My biggest education came from the people here. My own personal opinion - which could totally be wrong - is that there are some folks here who have been eval'd, tested and treated by the best but still do not feel well, or function well. Symptoms still seem to do what they're going to do regardless of the highest level of medical care for some POTs people. And symptoms also seem to change from day to day for a lot of folks including me. I guess for me I'm not sure the best autonomic Dr will make me any better than just trying to educate myself. I learned a lot from how these people manage themselves and never use it in place of seeking sound medical advise. So far I've learned way more on this forum than I have from most of my specialists. Good luck to you and your medical path. This forum is a great start for feeling mentally safe and supported in an autonomic nightmare.

[diamondcut]

I totally agree with every word of that!

[Christy_D]

My son is an example of Relax86's post. We have been to Clevand (5x), spent a month at the Mayo and are now seeing a MCAS specialist in SC and my son is sicker than ever. Nothing has helped and he only seems to get worse. So seeing a specialist is not a guarantee you're going to feel better. BUT, I'm not leaving any stone unturned trying to make my son get/feel better. I think we just haven't found what will help him yet, and there is a long list of MCAS medications yet to try. Plus, we did have a short lived success 2 years ago(6 weeks of reprieve) that still gives us hope we will find what we are looking for. Just not giving up.

[Relax86]

@ChristyD - if this was my child I would not quit seeing Doc's until I heard every possible answer to all these POTs questions. Good luck to you both. T

[Kellysavedbygrace]

I ditto all above.

Cleveland clinic does not require a referral and you can often get in there quicker than other autonomic testing centers.

I'd suggest 2 things:

1. find a new new primary doc (don't waste anymore time w one who does not listen to you because you need a doc who is willing to learn, listen and work with you as you bring new info about your condition to him or her.)

2. find a cardiologist. If they don't know about POTS tell them you want to "rule out Neurocardiogenic Syncope"- this is a more common form of Dysautonomia that most cardio docs have heard of. The way to rule it out is with a Tilt Table Test- which is also the gold standard diagnostic test for POTS. You can do all this locally w/o going to a major medical center (or while you are waiting for your appt. At a major med center.).

So glad you found this site- blessings to you.

[Miqual]

Thanks for the words and suggestions everyone. Seeing my primary physician tomorrow and bringing some more information to her. Over the last 2 months I've started following a lot of the dietary and lifestyle change suggestions from here and some other Dysautonomia sites and finding they are helping take an edge off of things, especially since I dove hardcore into heavy salt-beverage intakes. Fingers crossed here. I've got the childhood records with the "hyperdynamic autonomic nervous system" diagnosis over to her already. Mayo has turned us down saying they didn't think there was much they could do to help. I have yet to have any sort of tilt-table testing done and that will be brought to her attention. I'll keep you all posted and look forward to participating with everyone here. Good luck to you all too!!