Cleveland Clinic

[Mike]

I'm going to see an Autonomic Neurologist at the Cleveland Clinic next month. I'm sure we've all seen a Cardiologist before, but I'm just wondering if anyone has seen an Autonomic Neurologist before. What the experience was like, any tests they might have done, maybe some questions I should ask. I've seen a Cardiologist at the Cleveland Clinic before, he's the one that referred me, I've also seen a Neurologist in my home town before but he wasn't an Autonomic Neurologist and said he couldn't really help me. Thanks!

[Kris4444]

Hi Mike,

I was seen at Mayo clinic Rochester, MN. They will do a tilt table test to see what happens to your blood pressure when you go from laying down to standing. They also did a sweat test to see if there were areas of the body that weren't sweating or were sweating too profusely. They hooked me up to a halter monitor for 24 hours to look for palpitations or irregular heartbeats. They tested my blood both laying down and standing up for levels of norepinephrine. (I have a flushing disorder Hyper Pots).

They also sent me to many other doctors to have testing done to see if the autonomic nervous system was causing problems in those areas, GI, ear nose and throat, vascular doctor.

I hope this helps! Good luck at your visit!

-Kris

[Poncha]

I've seen both an autonomic neuroloigst and cardioligst at the Clinic before and had the autonomic testing done at the Clinic last year. I had several tests in one day that started early in the morning and ended with me seeing a cardiac electrophysiologist and discussing my results. I didn't have the tilt table that day, but had one previously and also had one later. The tests I had were the sweat test, the blood volume test, the hemodynamic test, and autonomic reflex testing. A month later, I had a 2nd TTT and was then diagnosed with Hyperadrenergic POTS. Later in the year I tried to do the sweat chamber test, but couldn't tolerate it and I also had a skin biopsy. After all this was done, I also underwent several different types of stress tests.

A few months prior to my autonomic testing, I also saw a neurologist in the Syncope Dept there who ran a battery of blood tests on me looking for an underlying reason for my dysfunction. He also had my catechlomines tested (I forget the name of the test) where I had to lay down for a while, get my blood tested, and then sit up for a while and have my blood retested. I've also had a 24 urine test done when I was a patient in the hospital, as well as at home too.

[Mike]

Thanks! I have had a couple tilt tests before and even the blood volume test, the cardiologist ordered.

Hopefully the autonomic neurologist will order some of those other ones mentioned.

I feel like every doctor I see orders a couple tests and passes me on to another doctor, and I'm running out of doctors to see. Haven't seen an autonomic neurologist yet though. Thanks again for the responses

[Natops]

I don’t mean to sound to pessimistic. I think there is a difference between pessimism and just trying to be truthful. I suffer from autonomic neuropathy…. And lets be clear autonomic neuropathy is a symptom… vs. a diagnostic disease name. The cause of autonomic neuropathy would be the disease. Dysautonomia/ Autonomic neuropathy (in my humble opinion) is a very gray area of medical science. Neurology in general is a gray area …compared to other medical sciences. The “specialist” will admit they don’t understand most of the science behind it. Yes they do know a lot… but I’ve been sick for 5 years…. In that 5 years…. I can hardly count on one hand a success story I have heard of diagnostic /treatment/ remission…regard to POTS/ SFN/ Dysautonomia etc etc. Autoimmune diseases are shrouded in unknown and unexplored laboratory testing. So, when you say one specialist pass you off to another specialist…. I’ve seen over 30 doctors. Many people here have been through doctor after doctor. I think the reason is that this is a poorly understood symptom / diseases. The proof – look how many people go without finding answers. Look how few doctors there are that specializes in dysautonomia. There’s not many. Far and few between. Luckily there are sites like this that we can come together and share information to help each other deal with this mysterious ailment.

[Poncha]

I agree with Natops. There are very few people who find the underlying cause of their dysautonomia. I have yet to find mine. I've only been sick for about 2 years and have symptoms that very in degree pretty much every day. I've seen numerous specialists, and yes my POTS doctor has referred me to countless doctors and for countless tests, and yet I sitll do not know the cause of my dysautonomia. But that doesn't mean you shouldn't try to find the cause. The key to successful is finding the casue. Many people have lyme, or diabetes, or some other autoimmune process going on that is the culprit. Finding it is difficult. Treating it can be even more difficult. Keep fighting for an answer, even if it takes years and don't ever give up.

[Katybug]

I agree that dysautonomia is not a well understood illness. However, there are many people that do recover or at least show great enough improvement that they return to a fairly normal life. I've been ill for 8 years. I won't ever give up trying to find answers and make improvements. I also believe that those of us that are pushing for answers today, are paving an easier path for the dysautonomia patients of the future. That's how medical progress is made. Anecdotally, I've noticed that many new members are being diagnosed much faster than what most of us were even 5 years ago when I joined this forum. My own PCP, who knew nothing about POTS when I was diagnosed, has recognised the symptoms in 3 other patients since working with me. He learned and he used that knowledge to help someone else.

I know this road is long and winding (and mostly uphill) but it is so important for us to advocate for ourselves. We have to care more than the doctors and keep fighting for answers.

[Mike]

I agree and understand there's little known about our conditions. There are just many things that get frustrating. I'm sure we all feel that way at times. Poncha, you brought up Lyme, I've had some doctors gladly test for it and I've had other doctors tell me they don't believe Lyme exists. The thing that frustrates me the most is I feel this is the last doctor I can see, I don't know where to go next and I don't want to give up. I'm excited because I haven't seen a doctor with this specific specialty so I was hoping for something different, like tests or medications, cause I haven't responded to anything so far. Katybug that is awesome that your PCP has been able to recognize and help others after learning from you! Natops you couldn't be more right that there are sites like this that we can come together and share information to help each other. I've been dealing with NCS for 14 years and only found this site last year. The people here are great and helpful, wish I would have found this site long ago.

[Natops]

…And I wasn’t suggesting to not seek the help of specialist. If you have dysautonomia, neuropathy etc… a doctor is probably your only chance of finding help. I’m simply saying try not to get frustrated when doctors don’t have the answers…. As I mentioned above there are few doctors that understand this stuff and even the ones that do may struggle to diagnose you. I was lucky. I was only into my unexplained illness for a year - twelve doctors later – when a POTS specialist ran that specific test that no doctor had even mentioned. Bingo – antibody found. Now doctors have to listen to me… they can’t just shrug off my blood results…. It’s open up doors to treatment options…. Unfortunately… they haven’t been responsive… or they are too costly to pursue (IVIG). The disease name (diagnosis) or cause of the antibody escapes even the top autoimmune specialist at Mayo.