my tests are coming back normal

[sleeve]

i was seen by a really nice neurologist who thought i might have POTS (an my brother too) since so many symptoms throughout my life can match. i thought i was finally going to get somewhere with what has been happening in my body. he passed away unexpectedly 2 weeks ago. sad!! great doctor

now i am at the Mayo Clinic being seen by Dr. Goodman in the Autonomic Lab. so far every test has come back normal, even the Tilt Table. EEG, skin nerve biopsy, a couple of other tests. all normal. this has been my story. strange symptoms and nothing showing up on tests.

does anyone have experience with this happening and some understanding of wether you can still have POTS or some form of dysautonomia even though the tests are not showing much??

thanks very much, eve

[mtgardner]

Have you had both an MRI of the brain to rule out smaller strokes and other factors and also your TSH, free T3 and free T4 tested to rule out hypothyroidism?  I have hypothyroidiam and my body temperature can be as low as 95.8-96.6 and I sometimes have shaking chills from this.  My MRI did show some small strokes and gradually I am learning what subtle things have been effected by that.

My tilt test was abnormal but my abnormality showed up later in the testing then many.  My test was an hour long.  Some people only show symptoms late in the test not after the traditional ten minutes.

I should state however I don't have POTS and an increased heart rate is not one of my symptoms either.  I do sometimes have skipped beats but so far it has been in relation to medication taken or low potassium.

I have autoimmune thyroid problems in addition to other autoimmune syndromes and it is thought that it might be the reason for my neuropathy and my autonomic dysfunction.
I also have a lot of allergies and chemical sensitivities. I will see Dr. Goodman in late January to see if the autoimmune is actually the cause and rule out other factors.

I hope you find some of the answers you are needing!  None of this sleuthing out answers is easy or inexpensive but our health is foremost.  Best wishes that things become clearer and health is enhanced. Marie

[sleeve]

thanks very much for responding meagan.
yes, i know Dr Goodman is the best. i see him thursday to review a lot of tests taken monday. seeing him i hope will help with all the confusion i am having right now. well, you must understand... the time, money, energy you spend trying to get an answer, start to think you're a little crazy and no answers. it's a lot. like a full time job.

we did a Holter monitor test last week. maybe this is more heart related.

over time my symptoms have been all over the place. some have subsided others starting. my symptoms are worse in the summer with heat (Phoenix). are not so bad now that it's cooler. being gluten and dairy free has helped a lot as well (brain fog decreased, gastro better, body aches not so bad).

in a nutshell: tremoring when stressed/can't get warm; stopped sweating this past summer; body temperature seems really low even when it's warm; vision changes that the optomotrist doesn't see as prominent but my visual acuity is off; confusion; clumsiness; difficulty completing sentences, finding words; some cognitive problems; long stretches sitting at the computer has created a few cases of feeling like i am having a stroke or something (leg pooling, neck swelling, numbness on left side and face); dizziness where my head is swirling some at yoga (never had that before); out of nowhere my heart will race while standing or sitting; sexual dysfunction nearly my whole life. more and more food intolerances not allergies though (vinegar, avocado, any grain but rice... more and more foods this year. i ate oats a couple of months back and had trouble with coordination)

a lot of this has happened after being on Lexapro. the withdrawal was terrible... took a year. Dr Goodman said he has seen people with autonomic issues get worse on them. until thursday i don't know what the answers are if there any. he may do a Celiac test

after reading posts i don't have it so bad except that it's difficult to get my business back running again. the Mayo isn't cheap. in my heart i now i did the best thing for me even if the tests are inconclusive, but my mind can go another direction. that's normal though and part of the process.

you are so kind to read and respond. this is soooo long!! i have never posted anywhere. thank you.
how are you feeling? did the diagnosis help you reestablish your health and life?
i hope you are felling well. eve