Anyone had a positive experience with a neurologist?

[jklass44]

I had an appointment with a neurologist for the first time today, and I went into it having higher hopes than with the cardiologists I've seen in the past... Oh boy was I let down!! It seemed like every time I tried to explain some of my symptoms (severity, frequency, etc.), he would cut me off and say that it wasn't relevant. For example when I was talking about my palpitations, chest pain and lightheadedness and how all of that made me feel extremely drained and fatigued constantly he said "Fatigue really has nothing to do with any of those symptoms, so I would just forget about that." That's basically how the entire appointment went, him dismissing all my symptoms or anything I said really. Then he asked me to close my eyes and touch my finger to my nose a few times, said I was fine, and told me to start taking a multi-vitamin...

This has probably been asked before, but what kind of doctor/specialist diagnosed you? How hard did you have to advocate for yourself in terms of requesting relevant tests, etc.? I'm running out of options as there are very few autonomic specialists in Canada (at least in my vicinity). My PCP has been amazing through all of this but he doesn't have the resources to really help me.

Thanks guys. Hope your day is going well!
Jen 

[WinterSown]

My primary sent me to the cardiologist who sent me to the EP, and they both sent me to their neuro down the hall. It was really a team effort between the three, they all knew which direction the tests were taking. After my TTT, and I did not faint, the EP asked me what I do to feel better. I said I go lay down. That got me my diagnosis. And other things.

Get a different neuro, your guy is not caring. Is it possible you can ask for a recommendation for a neuro from any of the doctors you have that understand your symptoms? That way there is the expectation that their recommended doctor is going to be on board with your current diagnosis. 

[Shannoncr]

@jklass44 you could look up Dr Svetlana Blitshteyn... she is a neurologist that specializes in dysautonomia... she does video consults so you won’t have to leave your home. 

http://www.dysautonomiaclinic.com/

[StayAtHomeMom]

I was sent to my neurologist who specializes. My first appt he cut me off, didn't look at me. Seen me for 15 minutes after waiting an hour after my appt time. Then halfway through proceeded to yell at a nurse in front of me about a file not being in the right place on the computer. When I asked he said the file had nothing to do with me. I almost didn't go back for the follow up after he requested a blood test and urine catacholomine test. I am glad I did. He did another TTT, more blood testing, EEG, Brain MRI, Sinus CT, and nerve conduction study to help me find my underlying cause (haven't found it yet but ruling things out helps.) According to his nurses when you first come in he only sees you as data, as time goes by he gets to know you. He is a devout Muslim and pray for all of his patients. He has been great after that first time. I have seen him joke around and smile. Sometimes an unlikely doctor can be good. That being said he started with me double checking work. I had already had my POTS diagnosis. He reconfirmed it and added autonomic dysfunction as well. He is the one who started my midodrine which has been helpful. My cardiologist who diagnosed me knew nothing about POTS. I brought him data and requested the TTT. He was an amazing cardiologist but really didn't know enough to help beyond basic research. He sent me to the neurologist who after a time made me feel like I was not crazy. And things will be OK. 

[Scout]

@jklass44 I'm so sorry to hear about your negative experience. It's so frustrating how dismissive some specialists can be, and frankly, how arrogant of them. 

I am having a similar issue where my cardiologist, as lovely as he is, seems to know nothing about POTS.

It's all very tricky.

Trying to find a dysautonomia specialist / neurologist who is well versed in these matters.

I hope you find someone soon and get the best treatment, and start feeling better. 

 

[jklass44]

Thank you for all your help and kind words everyone! Sounds like we've had some similar experiences for sure... Fingers crossed for the doc I'm seeing next month. Another cardiologist but she apparently has an interest in POTS. Not a specialty but hey I'll take it at this point.

Have a great day

[yogini]

Autonomic neurologists specialize in treating dysautonomia.  They are very rare.  Most neurologists (who deal with the central nervous system) even really smart ones don't know about POTS.  I wouldn't bother unless you are going to see them about a CNS issue.  Cardiologists and electrophysiologists are much more used to treating heart rate and blood pressure issues, so you have a much better shot there.

[TCP]

I found several neurologists useless about the dysautonomia and neuropathic pain. The cardiologist helped me, but only one out of the three I saw as he was also an electrophysiologist. 

Some people in the UK have seen dysautonomia specialists in London. 

[p8d]

I have a wonderful neurologist who specializes in dysautonomia and diagnosed and treats me including HR/BP initially.  She referred me to an EP who also specializes when BP/HR got too crazy.  The neurologist looks at the entire autonomic nervous system which is extremely helpful.   A specialist in the field is worth their weight in gold.

[TCP]

5 hours ago, p8d said:

I have a wonderful neurologist who specializes in dysautonomia and diagnosed and treats me including HR/BP initially.  She referred me to an EP who also specializes when BP/HR got too crazy.  The neurologist looks at the entire autonomic nervous system which is extremely helpful.   A specialist in the field is worth their weight in gold.

That's great - I just wish there were more of them around. 

[WinterSown]

5 hours ago, p8d said:

I have a wonderful neurologist who specializes in dysautonomia and diagnosed and treats me including HR/BP initially.  She referred me to an EP who also specializes when BP/HR got too crazy.  The neurologist looks at the entire autonomic nervous system which is extremely helpful.   A specialist in the field is worth their weight in gold.

Any doctors that listen are worth their weight in gold. 

[p8d]

Absolutely correct @WinterSown.  I also have a great PCP, gastroenterologist, and gynecologist all familiar with dys.

@TCP I completely understand the difficulty in the UK, my husband is English and I have had a few experiences with the NHS over the years.  All pre POTS when I could travel but I keep up on news about it because my mother-in-law is quite elderly.  She’s 95 and in better health than me.  I am incredibly lucky and grateful to have two neurologists who specialize in dys in my city plus other specialists familiar with our special needs. 

I guess my take away from this discussion is that we all need to do whatever outreach we can to bring awareness.

[TCP]

Yes, the neurologists haven't been great over here, but the Cardiologists who specialise in Electrophysiology have been very good. I know there are several excellent doctors specialising in EDS/POTS etc in London and some people get referred OK on the NHS and others pay to see them. My cardio is excellent and very open to ideas regarding causes and treatments etc. 

[DizzyGirls]

Yes!  Two.  That is two out of approximately 14 DIFFERENT neurologists.  Over the span of 22 years that my daughter has been alive, we have seen roughly 14 different neurologists.  Only 2 have been worth anything.  Our current neuro is limited to treatment that a local clinic offers.  He's not at a major university.  He is kind, funny, and sympathetic and I wouldn't trade him for anything.  He was the one who wrote the referral for my daughter to get in to her neurosurgeon.  He saved her life.  I don't know what was on that referral, but we got in within 2 weeks.  The other neuro diagnosed my daughter's EDS. 

[ks42]

I honestly have found that whatever specialty you see, whether it be a neurologist or cardiologist, they need to specialize or at least have some knowledge of POTS / autonomic disorders. If you can't find one near you on the DINET physician list, I've had luck by calling offices and asking if they've ever treated POTS, and how many POTS patients they have currently.

Otherwise, as other people have said, general neurologists often don't know what POTS is or how to treat it. However, I've run across the same problem with general cardiologists. I've seen some of the best general cardios in the U.S. who had no idea how to diagnose and treat POTS, since they mainly focus on heart disease, heart failure, etc (though EPs focus on heart rhythm and so they can be a bit more helpful even if not totally POTS knowledgable). They basically told me I had anxiety and/or pushed me off on other specialties.

However, by definition, POTS is a disorder of the autonomic nervous system, so it has been my experience that a neurologist who specializes in POTS or autonomic dysfunction often can and will do more than the other types of specialties. Besides tilt table tests, a lot of them will do other tests to look for small fiber neuropathy, other defects in the autonomic nervous system (valsalva, cold pressor tests, breathing tests, QSART, etc) and usually have more medications in their arsenal that they're willing to play with. For example, I have a cardiologist that specializes in POTS and a neurologist that specializes in autonomic disorders; the cardiologist is amazing, but she needs me to also work with the neuro because she can't order IVIG for an autoimmune cause, won't prescribe certain treatments like Mestinon because it's designed for neuromuscular purposes and it's outside her scope, etc. So if I had to choose one, I'd go with the autonomic neurologist. Unless I could see a doctor like Dr. Grubb, of course. He's an autonomic cardiologist who will test for and prescribe just about everything, from what I understand. So my first choice would be to go with Dr. Grubb. Or maybe Dr. Raj.  After that, an autonomic neuro.

Dr. Blitshteyn, who I think was mentioned by someone else above, is an AMAZING autonomic neuro, in my opinion. I love my phone consults with her - super helpful, you just need a doctor willing to follow her prescribed treatment plan since she can't write scripts or order tests if she doesn't see you in her office physically.

EDIT: I noticed you're in Canada. Since I don't know where in Canada, I'm assuming the answer is no, but are you within traveling distance of Dr. Raj in Alberta? He used to work on POTS here at Vanderbilt and is supposedly amazing. He specializes in autonomic disorders / POTS.

[Pistol]

This is what I have found: cardiologists often do not want to mess with dysautonomia because it truly does not originate in the heart. ( But they will always be the first ones consulted since it affects the cardio-vascular system, so they should at least get on it to be able to treat the tachycardia/ BP issues, that's within the scope of their practice!!!! ) Neurologists and Endocrinologists do not want to be responsible for it either because of the cardiac symptoms ( they do not deal with cardiac meds and most dysautonomia patients display cardiac symptoms ). So - the best physicians to treat dysautonomia are autonomic specialists, whether they are cardiologists, neurologists or endocrinologists. They understand that this disorder affects ALL of the HUMAN BEING - not just a particular anatomic region or mechanism. So - in other words: if they SEE the whole of each patient they are better equipped to understand dysautonomia then someone who sees the specialty instead of the patient.  

[jklass44]

@ks42 You make some really good points! And I totally understand the feeling of being "passed off" to different specialties. I think I went into that neurology appointment having high hopes because of exactly what you said; ANS dysfunction technically falls under their category. Unfortunately the doctor I saw didn't specialize nor was he familiar with these sorts of syndromes or diseases.  Hard to blame them when that's the case, but when you've seen so many doctors it just gets frustrating... I have heard about Dr. Raj and I'm about an 11-12 hour drive away. Wondering if it might be worth it to make the trip...

@Pistol You've summarized that quite perfectly I must say! Thank you for laying that all out and putting my cluster of thoughts into words!