Can't Find Help

[robert elrod]

It might just be me. Has anyone else gone through the despire of just not able to get help. When everything started I was told I was depressed and had anxiety. I wasn't so much untill countless trips to doctor after doctor and no help. Fast forward from misdiagnosis after misdiagnosis I finally understand what has been going on since day one. years later still cannot get help. The last test at the dysautonomic clinic turned out to confirm my suspicions of hyperpots/dysautonomia and likely eds3 plus a unknown heart condition that took my heart to 272bpm with 200/110. Again sent home without treatment. My local doctor even with info infront of him still said anxiety and he wouldn't treat for anything and said if they wanted to develope a treatment plan he would help oversee it but wasn't going to try anything related to treatment of dysautonomia just my anxiety. They wanted the local doctor to manage my problems. How does anyone get help. I realize that I live in a small town of doctors that dont care about helping. If they did I dont think I would have to fight so hard just to get help even after diagnosing myself and getting it confirmed by independant doctors. Is it just me or is it this hard for everyone to get help. At times it doesn't seem worth the effort. I guess because almost everything now takes so much effort even just standing walking, not to mention I had to go out on disability after twenty four years of working. I guess I'm just ranting I know others have a hard time too.

[Darlene]

i m having a hard time myself dealing with dysautonomia and chronic pain. i see a very good cardiologist (grubb) and neurologist, but don't feel like i am getting anyway. you would think they would do extensive testing to find the cause. their has to be a reason i have chronic nausea, burning inside my body, fast heart rate, dizziness, chronic pain, lesions in my brain... i go to counseling for the 1st time tomorrow, not sure if it will help but worth a try i guess.

[puppylove]

I'm so sorry. I don't really know what to say, but I wanted to let you know you're not alone. I have felt like that too. It's just so hard. I just remind myself that I'm here for reason and there has to be a reason that I'm going through this "experience", even if I never find out what it is. I want to fulfill my purpose here even if POTS has to come along for the ride. Don't give up, you are strong enough.

[Katybug]

You're not alone

I stopped counting at the 27th doctor. I do now have a good team of docs around me but it took five years of me being relentless and leaving no stone unturned. I advocated for myself fiercely and didn't give up until I found that one doc that got the ball rolling. She helped guide me to other worthwhile docs that I needed. Don't give up.

[Rachel Cox]

Don't give up. Let your fingers do the talking and start emailing any doctors within the radius you can get to. Call to get their email addresses. Just don't give up, be clear and concise with all your data, you've got lots to go with. It's so disheartening. You need help and you owe it to yourself to make a big noise, even when it is soul destroying. Keep at it Robert. You are worth it.

[jpjd59]

Robert:

You are not alone!!! If you are feeling helpless and overwhelmed with this process you need to have someone help act as an advocate for you (family member??). My daughter has POTS and I know she would not have had the energy to battle the medical system and be so persistent with the doctors without help from her family.

Whatever you do, don't give up. We are still looking for answers too (16 months so far) but I feel we are getting closer everyday.

Good luck!!!

Pam

[Christy_D]

Emailing doctors has been my best way to find the ones willing to help my son. I email them with a brief history and ask if they are willing to help. Two doctors, via email, referred me to other doctors that could help. All the doctors currently treating my son have been found via email. I googled simple terms like 'hematologists St Louis', or neurologists etc.. It provided me with a long list that I could then google those doctors and read about them. You can usually find their email address somewhere on line as well.

The doctor we saw at the Mayo Clinic had an article he had written about POTS and his email address was on it, so I emailed him. They have all responded back to me fairly quickly. I got a lot of doctors turning me down and some willing to ask their colleagues if they could help us.

[targs66]

I'm so sorry to hear you're going through this, Robert. I can really sympathize - just posted yesterday about my miserable visit to my now ex-GP who just wants to treat my "terrible depression" because that will apparently cure every physical woe I have.

It is such a demoralizing feeling to have a doctor completely dismiss you like that.

As much as you feel too tired, ill and discouraged to keep trying to find some help in the form of a decent doctor, there's good suggestions here and tons of support. One step at a time, I think.

I really hope you find some help soon. Keep us posted.

[ukwildcat]

Ive had ncs and pots for a long time, since high school and I am 38 now. I decided long ago that my medical problems were in my hands(my new job). I had to research to assist my doctor in finding my diagnosis(and been to many rude and down right mean doctors-vey helpful to take someone with you to hear what they say medically and otherwise, because most people wont believe how they talk to you. after my husband heard how they talked to me, he became totally involved) also had to help my doctors to find possible treatments(many didnt work-very medicine sensitive). but please have faith. there are alot of us out there, that have went through what you are going through, and have made it, a little mentally scared but stronger. Search for a doctor that fits you, Dr.Grubb has so far ben my shining light. Believe that you know your body better than anyone else and trust yourself. Also, familly member as an advocate is always a great idea. there will be times you need them. my mom was mine, she did things even when I told her I didnt need her but she knew better. good luck to you. It is not fair but i think there is a reason why everything happens and some times, bad things just happen to good people.

[robert elrod]

Thanks to everyone who posted a response. I just lost track of this forum and it was rude to post and not follow up. I was discouraged and didn't keep up. I finally got through at vanderbilt and Georgia heart science this month and was refereed back to my GP. The specialist diagnosed hyperpots ,fibromyalgia , eds3 joint hypermobility ,Dysautonomia, ibs, gerd and told me they would work with my GP on coordinating treatment. I saw him yesterday, I was really hopeful as the specialist told me that some of the medicine I was on was a bad combination and the would help my GP come up with a better course of treatment. My GP decided to fire me as a patient instead with adjusting the treatment. He said I was to complicated for him to treat and I should find some one more experience. I reminded him that both medical schools said they would help him with the treatment plan and give advice, to that he said he doesn't have time to do that. I told him I had tried before and that no one local that I had called knew about it and the few that asked me to drop off some info never called back. With that he proceeded to leave my room.

[Joann]

Wow, I can't believe he did that. Well, I guess it shouldn't surprise me. I didn't know they could even do that. I wonder if you could report him to some board?

It does sound like you are better off without him, but I also know its frustrating trying to find someone to help.

I left my primary doctor of 11 years when she would not do anything but continue to tell me I just had anxiety and gerd, even though there was overwhelming evidence there was more going on. I currently have a doctor who has stated that she doesn't know what else to do with me. I know I need a new doctor but like you don't know who. Since I am currently going to Cleveland Clinic, I am going to wait until I have some info from them and then search out a new primary, I am going to ask them if they know of any suggestions for doctors near me. Maybe one of your out of area specialists could help you find someone nearby.

I do like the idea of emailing doctors and seeing who responds.

Katybug, wow five years to find a good doctor, well I am at 19 months, so I guess there is still hope.

[margiebee]

I definitely feel your pain, I was diagnosed with anxiety disorders and it certainly doesn't help that I do have an anxiety disorder, but what was called "panic" was actually POTS. Not to mention, once my primary care doc finally referred me to a cardiologist under the suspicion of POTS, that cardiologist told me "well you could have POTS, but basically that's just anxiety and there's nothing I can do about it".

Anyway that is really horrible how your GP treated you, I have honestly never even heard of a doctor "firing" a patient!

[bebe127]

Robert,

You have come to the right place. There are many including me that have gone down this road before and contiue to go down it for that matter. I've been posting on here a lot lately about the some of the same issues. I'm going on four years and still don't have a clear diagnosis. It's tiring just having this illness, but to then expend energy that we don't have on doctors that don't/won't help is enough to break anyone down. That dr. ought not to be practicing. I would definately look into reporting him to your insurance or something.

Such a great idea about emailing dr.s, I'm going to try that myself again. I have in the past emailed one dr. that I was referred to and he promply emailed me and told me that he couldn't help, that's probably why the emailing stopped there. I have new found HOPE (by coming on here and posting--this forum has been such a great, compassionate, caring and encouraging group) and I'm getting back on the ride equipped with what I hope will bring me some answers. If not, I'll be irritated for a while, but I'll have to get back up and try that much harder. Only we know our bodies and only we know how we're feeling. And, great idea on having someone accompany you to the visits if that is possible for you. Two heads are always better than one. Keep up your search!!

One more thing. If you have insurance, you might call them and ask them if they have a medical support group. My insurance does (it's called Medical Decision Support, I only recently found out about it myself) and if you have a diagnosis they will reasearch the dx. and send you a packet of information as well as doctors in your area that treat it. I wish my insurance had this years ago, but they do now and I'm going to use it for all it's worth. Also, make sure you have copies of EVERYTHING so that when you do get into a dr. they don't have to go through the trouble of getting other dr.s to fax your information. Trust me, the dr. will be grateful you did.

I know this is so hard and I do hope you find a doctor that can help you. I've always thought that finding a dx was the hardest part, I know it's no concilation, but you now have clear diganosis to go on, that in and of itself is encouraging. This is a roller coaster ride from the beginning. Try not to give up! I hope a great doctor is right around the corner for you.

Be well!

Bebe

[robert elrod]

Honestly I thought that dx was the finish line. I too have been down the anxiety diagnosis etc. I couldn't believe it myself when he told me I was too complicated and took too much of his time. What's sad is all he had to do was pick up the phone the specialist was going to tell him what needed to be done. I think he is mad because I told him what I had and he would not believe me and I was wrong. Then the specialists confirmed everything which made him more upset and told me how I couldn't have fibromyalgia and all that only women get pots etc.

[bebe127]

So sorry for your experience! I think many of us have had similar issues with idiot dr.s, I know I've had my share. Try to not let one dr. (or more in many cases) discourage you from looking further into treatment. Some doctors have such a chip on their shoulder as well as a god-complex and if we don't fit into their little box or their medical textbooks well, then we're SOL. Try to keep hope, I am convinced there are good doctors out there willing to listen and help, we just have to be vigilant and patient; sometimes that is the really hard part. I truly hope you find a good doctor and get some relief sooner rather than later.

[Christy_D]

Robert,

I have found all of my son's specialists via email. Sometimes it takes some digging(ie articles on line) to find an email address. I would research their bio's through what hospital they were affiliated with. When I was looking for a local doctor to help treat MCAS through Dr Afrin in South Carolina I emailed a lot of doctors, finally one of them emailed me back and said she would help with the search and presented it to her colleagues. So, email is a very good route to take. Instead of a GP, maybe see if you can find a local neurologist to help.

Christy

[robert elrod]

I have heard so many stories and know it is so hard to get DX. I never imagined after the dx the battle would start over. It has been a living nightmare for the last ten years. I can't give up again, it almost cost me my life when I gave up on the doctors. I know there's no cure and treatment is just supportive. If I can just get back to how i bad I was a year ago.I might be able to work again as hard as it was I still was able force myself to get up and at least make it to work. Even through that was all I did I don't even do that now.