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New To The Forum From Kansas City


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Hello everyone my name is Jessi.

I've come a long way from trying to figure out what is wrong with me to finally getting a few answers. I was diagnosed with Small Fiber Neuropathy a few months ago, prior to that they just kept telling me is looked like Fibromysagia. I have not been Diagnosed with Dysautonomia because my current neuro is telling me my bladder pain and my gastroparethesis <--- if i spelled it right has nothing to do with my neuropathy even thought my urologist and gastro Dr's say it does. So as of yet I've only had a tilt table test done but it was a joke because the stuff they were suppose to spray in my mouth went half on my face and when i told them hardly any of it got in my mouth they just said it was fine. I am currently trying to find a Doctor in the area who does autonomic testing with no luck of course. My symptoms consist of:

Abnormal sweating

UTI pain with no UTI found - Confirmed

Slow bowel - Confirmed

Burning pain almost everywhere

Mild Cognative impairment (Memory) - Confirmed

Carpul Tunnel both hands - Confirmed

Migraines/Headaches Daily (Light Sensativity)

Rapid heart beat - Confirmed

Lightheaded when standing

Hypertension - Confirmed



Temperature issues - the pain is worse if im in hot or cold environments. I still can't find a good temperature.

I have also been diagnosed with MGUS and I know I am missing something but you all get the picture im sure.

Does anyone elses ears burn? Very curious about that one lol. I would love to hear from anyone in the Kansas City area as I'm not sure where to go anymore.

Thanks for listening :)


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Hello Neighbor,

I live in McLouth KS about 40 miles from KC. I am much older than you but have had some autonomic testing in KC. Dr. Dendi is the electrophysiologist that I saw at KU Med. I have since been to the Mayo Clinic. Dr. Dendi does see patients with POTS although is mostly familiar with the heart aspects. I have also seen a neuro at KU Med. PM me if you have any specific questions you would like to ask! Good Luck!

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My ears burn often. I have mast cell activation syndrome (MCAS) and when I have a mast cell degranulation, my ears become dark magenta and burn....you can actually feel the heat radiating off of them. Have you looked into whether you might have interstitial cystitis in regards to your UTI pain? I don't have this but I know there are a few others on here that do. I also know several people on my EDS forum have interstitial cystitis as well. I can't diagnose you obviously, but gastroparesis is a very common problem with dysautonomia. There are lots of old threads on here regarding this topic, so it might be worth you doing a search.

Welcome to our community!


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Hi and welcome to the forum. Sorry to hear what you are dealing with but you will find plenty of support and information on the forum. The best thing you can do for yourself is find a specialist to help you get through this illness. Hopefully you will find someone close by.

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  • 2 months later...

Hey Jessi,

Has your urologist performed a test to see how much your bladder retains after urination? I have very similar symptoms to yours and was told it was a kidney stone they couldn't find, then trigonitis, then interstitial cystitis, and then they finally found I was never fully emptying my bladder. I had to start taking baclofen to be able to fully empty my bladder. My neurologist thinks that this is related to some sort of dysautonomia but hasn't really put it together.

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