Is this hospital terrible or is it me?

[green]

Hello All,

I went to a main hospital in Rochester, MN. In fact, I am still here. They booked me across the weekend, so I came to my first appointment last Tuesday and my last appointment is this Tuesday. 

They have run a lot of tests: stress tests, autonomic tests, oxygenated blood test, catchecholamine test, blood tests.

So far my consultations have been a real bummer. First the neurologist said that while I may have POTS, he doesn't think so, and even if I did, my POTS wouldn't explain my symptoms. I told him I have generalized fatigue independent of autonomic stressors like heat/cold, standing, stress, etc. (I also get worse from all those things: heat/cold, standing still for more than a few minutes, stress).  He said that POTS doesn't explain general fatigue.

I guess I felt like...this was kind of a lame answer from a supposed autonomic specialist. Arn't they supposed to understand that POTS causes fatigue? 

And then I had a bunch of tests and the exercise consultant said: you can either do high-intensity short-duration exercise OR you can do a lot of low-intensity exercise...either is equally supported by evidence and neither works for everyone. This did not strike me as particularly insightful, but rather a rehash of the old: POTS is due to deconditioning so exercise your way out of it. And in general, I did not find the exercise consultant to be helpful - this is stuff I've tried before. I tried Dr. Stewart's gradated exercise program years ago and it did not help. 

I am looking over all my tests too - they are all negative. Stress test was normal, autonomic tests normal, catchecholamine normal.... normal. So, one thought is: maybe I don't have POTS??

I even suggested that in the opening interview with the dude. And he was not helpful. Maybe they could have checked for something else if he was so confident that I don't have POTS? I tried communicating that to him but I had a lot of trouble understanding his english. He sort of barked at me that he could refer me to the chronic fatigue clinic, but that didn't seem like a smart move. I also just had trouble understanding what he was attempting to communicate in general. 

Anyway, I haven't done the final consultation. That is Tuesday. But it seems pretty clear that I haven't learned anything about my condition that could justify the incredible expenditure of flying to Rochester, MN and spending a week at an AirBnB, and paying for thousands of dollars of tests. I am incredibly bummed!

I am thinking of asking the doctor to write a letter saying "this man clearly does not have POTS" because a year ago I was denied entry to the Peace Corps because I reported POTS. I guess if I don't have it, then I can go start a new life in the third world? 

Absolutely baffled! Thoughts would be appreciated, but I do not know if it is even coherrent what I am asking. Here is my central question: Is this clinic terrible or is it me?

1.) They poo-pooed my diagnosis at the start.

2.) Despite having serious doubts about my diagnosis, they didn't run any other tests or explore anything interesting. They plowed ahead with the full battery of POTS tests.

3.) They taught me nothing except: you no longer qualify as having POTS.

4.) I have spent an incredible sum of money and have nothing that could help me, except possibly evidence that I do not not have POTS.

I am bummed about it because - I still feel bad! I wouldn't have wasted all this money if I were high energy and getting things done! I am low energy and struggling at life!  I am not going to do this clinic thing again if they want to refer me to the chronic fatigue clinic - it is too late, dude. I spent massive amounts of cash already.

[JimL]

IDK. I had a complaint about a similar experience in Scottsdale that was redacted because I mentioned the doctor's name. I didn't have a good experience. The doctor was a neurologist-ophthalmologist and she was terrible. just went through the motions and basically said, yeah, you have 4th cranial nerve palsy and it looks like thyroid problems in the eye, but we don't know why, but I am sending you back to your regular eye doctor for prism lenses. No interest in why at all. Understand other than age related far sightedness, I never had eye problems in my life. I'd never go back there again for anything. They couldn't pay me to. 

[Guest KiminOrlando]

I had a similar experience . I don't think this clinic in general does as good with dysautonomia as Vanderbilt.  Vandy was fabulous, but it was 15 years ago. f you're managing physician is good, then you are lucky. Otherwise, you may not be any better off.

I have a friend that did a chronic fatigue clinic and they documented all kinds of stuff for her. It was a good investment for her.

Treatment for this disease seems to be hit or miss. It took me many years to finally get answers. Hang in there.

[RecipeForDisaster]

I sure have a bad taste in my mouth - they messed up everything about my referral, had me do a short, bland survey (they refused to take any medical records, results, or letters from doctors who wanted me seen there) and then declined to take me. They were not doing telemedicine when COVID was in full swing, either. They told me I’d have to travel. Irresponsible if you ask me. 
 

They seem to love that chronic fatigue clinic. That’s not when I’d be going there for! I have a lot going on that’s mostly undiagnosed-abnormal labs, very low BP that is hard to treat, connective tissue abnormalities, etc. I was pretty disgruntled that they didn’t want to see me before they had much of any information on me. I’m looking at NIH and hope to do that remotely.

[Pistol]

@green - I am so sorry about your bad experience. The same thing happened to my sister overseas when she went to a "renowned specialty clinic" for autonomic work-up and was told that she does not have any autonomic issues - except they refused to do ant testing!!! At least you had testing. Knowing that you DON"T have POTS is good!!! 

12 hours ago, green said:

This did not strike me as particularly insightful, but rather a rehash of the old: POTS is due to deconditioning so exercise your way out of it

Actually - the exercise is good for POTS to PREVENT us from becoming deconditioned. 

 

8 hours ago, KiminOrlando said:

I have a friend that did a chronic fatigue clinic and they documented all kinds of stuff for her. It was a good investment for her

I agree with @KiminOrlando, I too know a few people who found answers and treatment once they saw a specialty clinic for CFS. And remember - CFS is a dysautonomia in itself???

[TCP]

Hi. Sorry you feel that this was all a waste of time, effort and money. I became ill with fatigue issues after Glandular Fever and surgery in 1984. Felt awful for 8 years until I got an diagnosis of ME/CFS. Symptoms waxed and waned over the years and improved when I started to eat more healthily. I got fitter and lost heaps of weight. Then in 2007 I had symptoms of whole body neuropathy, POTS and autonomic dysfunction. Put on Gabapentin and Nortriptyline. Then finally got diagnoses of Ehlers-Danlos and POTS. I didn't have ME it was always EDS and POTS. Many friends with ME/CFS and Fibromyalgia are being diagnosed with EDS and/or POTS. 

PS. The deconditioning thing annoys me greatly as I was pretty fit prior to getting GF and having surgery. Many people I have chatted with online have been super fit and have developed POTS. 

[Colomom]

 

My family has had a different experience than OP’s experience. My first experience was a health issue with my father  (not dysautonomia ). The hospital was a life saver for my Dad, numerous local neurosurgeons chose to ignore his debilitating issues for over a year, but the doctors immediately recognized his problems, did emergency surgery which saved my dads life.

After my Dad’s incredible experience  when my son started having health problems our local docs couldn’t figure out, I pushed to get him in at that clinic and am so glad I did. We traveled a long way  from Colorado, and while a few of the docs my son encountered were not helpful, some of the docs offered tremendous help.

It’s rough when you are suffering from complex health issues, it’s hard to have to wait so long for appointments, have to travel so far, and spend so much money. All of these seemingly insurmountable issues are probably amplified  by 1000 with COVID. 
 

Doctors are people, it has been my experience that in-spite of the “stellar” reputation of an institution, there are always some bad eggs. 
My advise to you is don’t get discouraged and make the most of your follow up appointment tomorrow. If your some of your tests were negative perhaps that is a sign of progress, if that is the case hopefully your docs can help you build on that progress. Some of the things I found that Mayo does well is interdepartmental communication, appointment and test scheduling, and online patent access to tests and records.
 

Hopefully your appointment tomorrow will be informative and helpful, if not don’t loose hope. 
 

[green]

Thanks for your support, everyone!

It IS possible that I DON'T HAVE POTS. And maybe it is worth the money to know. 

I finished the last of the tests today - sweat test. Clearly, I am normal for everything. Pretty fit, pretty normal.

It is sad because I was just talking to my Dad on the phone yesterday and he describes the same kind of fatigue issues that brought me here.

He also says he "gets woozy sometimes" and can't play pickelball (strange game popular with my parents and their friends), so he'll sit out rounds. It reminds me of me not being able to move fast enough in the warm summer weather to play sports when I was younger.

This is some sort of familial problem that we have no explanation for - it is impacting more than just me. 

[Pistol]

@green - here is a link to generalized information about fatigue : https://www.mayoclinic.org/symptoms/fatigue/basics/causes/sym-20050894

You may find more details under the chronic fatigue link. 

[green]

Hello All,

Thank you, Pistol for the link.

I went back for my final consultation today: I am pretty normal on ALL tests. Even tests for auto-immune problems. The only slightly abnormal thing was some venuous pooling which they said was probably genetic since my Mom has varicose veins. The doctor said that neither POTS nor dysautonomia explain my problems with fatigue.

So there you go. He said it could be mitochondrial disorder but he doubts it. 

I am inclined to accept this. I do feel better when I drink a lot of water, and I don't handle heat well, and I have brain fog and fatigue, but maybe I have sufficient hardware to succeed at life and I have been having so much trouble because I am not properly organized and/or not channeling my energy effectively.

best,

GREEN

 

 

 

 

 

 

[JimL]

I think that at times, doctors are afraid to say they don't know. They might say idiopathic or even hypochondriac at times when they can't explain things or find anything wrong. I've more than a couple long format news shows where people indeed had a problem, they just didn't get to see the right doctor who had the knowledge, experience and desire to figure it out. 

[Pistol]

@green - 

3 hours ago, green said:

I am inclined to accept this. I do feel better when I drink a lot of water, and I don't handle heat well, and I have brain fog and fatigue, but maybe I have sufficient hardware to succeed at life and I have been having so much trouble because I am not properly organized and/or not channeling my energy effectively.

Has anyone ever considered ADHD? I have it ( had it all my life, even prior to onset Of POTS ) and so do my siblings. I have found great improvement of fatigue, brain fog and inattention fro Ritalin. Hyperactivity and attention problems can cause fatigue, its from this article: https://www.verywellhealth.com/chronic-fatigue-syndrome-adhd-whats-the-link-3972913

Researchers concluded that ADHD and ME/CFS may share a common underlying mechanism and that over time, ADHD may develop into chronic fatigue syndrome and pain.

 

 

[green]

Yes, they said I had ADHD as a child. I took ritalin.  In my early 20's I was obsessed with this idea that my problems were ADHD / anxiety and I took a lot of psychotropic medications that, overall, caused more problems than they fixed. 

It is very strange. As a child I took a low dose of ritalin and I hated it - it killed my appetite but it did improve my school performance (although please note - long-term studies show amphetamines do not really improve performance). I tried it again in college, a higher dose of some amphetamine. And I think that the meds worsened my POTS-like issues (see what I did there?).  My issues started in high school and got much better my freshman year of college (no meds), but worsened in my sophomore year when I was taking a higher dose of amphetamine, running cross-country, and definitely not getting enough sleep.

What I think now is that a combination of stress, meds, running, poor sleep hygeine may have caused some damage when I was younger - and I had autonomic instability as a result.  Perhaps it resolved as a result of improved sleep hygeine (and I got a device to treat my apnea), not taking meds, and laying off on the running. 

I hope I can get back into running now. The doctor said he thinks I should try to keep my cardiovascular fitness towards the peak end to reduce my susceptibility to orthostatic intolerance issues.

I'll look at this research, Pistol. Thanks!