peralez01 Posted September 9, 2014 Report Share Posted September 9, 2014 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 sweatingUTI pain with no UTI found - ConfirmedSlow bowel - ConfirmedBurning pain almost everywhereMild Cognative impairment (Memory) - ConfirmedCarpul Tunnel both hands - ConfirmedMigraines/Headaches Daily (Light Sensativity)Rapid heart beat - ConfirmedLightheaded when standingHypertension - ConfirmedFatigueWeaknessTemperature 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 Jessi Quote Link to comment Share on other sites More sharing options...
angelloz Posted September 9, 2014 Report Share Posted September 9, 2014 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! Quote Link to comment Share on other sites More sharing options...
Katybug Posted September 10, 2014 Report Share Posted September 10, 2014 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! Katie Quote Link to comment Share on other sites More sharing options...
BeforeTheMorning Posted September 12, 2014 Report Share Posted September 12, 2014 Sorry you are having to go through all this. But Welcome to the forum! I hope you find answers soon,Best Wishes,Lyla Quote Link to comment Share on other sites More sharing options...
looneymom Posted September 13, 2014 Report Share Posted September 13, 2014 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. Quote Link to comment Share on other sites More sharing options...
corina Posted September 14, 2014 Report Share Posted September 14, 2014 Hello Jessi, just thought to say welcome at the forum! Quote Link to comment Share on other sites More sharing options...
IronPharmer Posted November 24, 2014 Report Share Posted November 24, 2014 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. Quote Link to comment Share on other sites More sharing options...
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