jaddico

Potluck, I have exact same syptoms. It feels like cool mist blowing or running down or next to my leg. . The medical term is dysesthesia. It's related to dysautonomia and neuropathy

PS, I rarely got periods with use of POPS..maybe once or twice a year with small spotting. I got off because I wanted to get pregnant but had to get infertility treatments due to miscarriages. Nuva ring continuous gave migraines and raised my BP.

I highly recommend Mirena IUD as well a. Another option which I have used is Progesterone Only Pills "POPS" such as "Errin", since I cannot take combined hormone due to migraines and elevation in BP. I have history of endometriosis, fibroids, heavy menstrual bleeding and uterine adenomyosis ( the main cause of the heavy bleeding). iIhave D&C /ablation done without success. POPS are the only thing that I will take

Thanks for this info. I find it to be helpful.

FightagainstPOTS I truly feel your pain . I have symptoms similiar in my thighs,legs and feet which worsen with exercise of the lower extremities (climbing stairs..It feels like I have been running long distance or climbing a mountain). I Had abnormal QSART but skin biopsy ( please make sure you get a copy of your result) was normal in fiber density but was commented as "unusual and excessive fibers" and will see a specialist for dysautonomia in Septmember. My neurologsit told me my skin biopsy was normal but didn't go into further details with me until he sent me a copy . I then contacted him about the comments on my report ( I'm not even sure if he saw it until I brought it to his attention)and told me that he didn't know why I have excessive and unusual huge numbers of fibers but to ask the specialist that I will be seeing in september. I was not pleased at all. I think your symptoms goes with dysautonomia. Its very uncomfortable to say the least and no one understand you because most of your lab work comes back normal and they think you are imagining things. I believe in your discomfort and don't stop until you have reasonable answers for your pain. small fiber neuropathy can do just that, with normal skin biopsy (go to THERAPATH.com). You can also have normal fasting blood sugar, hemoglobin AIC and have impaired 2 hr GTT or abnormal glucose tolerance test which can cause neuropathy. Stay strong and I hope you will find the right doctor soon.

Agreeky, I have the same eye problem. I never knew how to describe until I say how you stated it. Interesting

my weirdest is cool, yet misty sensation of water (sometimes running) on my legs and crawly sensation on my leg as well. Excellent question to ask. As we read everyone's response, hopefully we will see how our symptoms aren't that weired at all , epecially with some similiarities. To the general popuation, our symptoms maybe weired but in the Dysautonomia world, its unique and normal. I'm glad I found this forum.

I have extremely dry eyes, pressure and achy feeling/discomfort (almost as looking at the sunlight after you get your eyes dilated for vison screen or feeling like you have been stiring at something too long) . I also have enlarged optic nerve/disc and get visual field exam yearly with my routine exam. My glasses went from single vision to bifocal now. Night vison is my worst. I have lacrimal duct plugs to help me tear and I use Restasis. I know vision problems are part of dysautomonia. I was wondering if any of you are experiecing this type of discomfort.

Sorry to hear about your diagnosis.Please don't be scared. That's a lot to take in. Take it one step at a time and don't panic. Finding answers to madness helps at times. As I shared with you I'm looking forward to seeing Dr Chemali in Septmember. I'm sure others will join in soon to guide you. I've found everyone here to be supportive and understanding. These conditions can make you feel like an alien and its hard for other to understand when they cannot relate. At least here at DINET, I feel like home. Best wishes. Take care.

I've had these symptoms started 16 years ago and had 2 pulmonary function test which were abnormal and know one could figure out why. I end with Asthma ( inhalers does not help)and allergist specialist. My skin testing showed that I have terrible allergies and ended up with allergy shots since then. I will be getting an evalution for MCAS next month since I have neuropathy, terrible allergies, extemely dry eyes with lacrimal duct plugs to helpe me tear, fragrance sensitivity and anormal QSART. My sympotms of shortness of breath, increase heat rate and low BP got worst again during pregnancy. Now I know that my shortness of breath, exercise and heat/cold intolerance are all due to dysautonomia along with other weird skin sensation symptoms. Yes. Anxiety and panic atatck is often the first thing that doctors think of. The automonic nervous system controls breathing and can alter your breathing and heart rate.

I got it during pregnancy and has had neuropthy after pregnancy

For those of you who have had screening for Mast cell activitation disorder or have been diagnosed with it (MCAD); Who screened you for it? 1. Was it your neurologist /dysautomonia specialist o 2. An allergist (immunologist) 3. Other. Thanks to all the wonderful information and resources from this forum, I'm now wondering if my neuropathy/dysasthesias (arms, thigh and legs the worst) and abnormal QSART test, excessive and unusually high nerve fibers from recent skin biopsy, as well as pregnancy/post-surgical induced POTS has anything to do with MCAD. I've been getting allergy shots for over 10 years. My allergest states that my skin testing was bad and I get 3 shots every 2 wks after my most recent test almost a year ago. I can barely tolerated my injections because my arm swell up and itches so bad ( they do "Epi-wash" before the injections to help minimize local reaction..doesn't help much). I'm allergic to shellfish and had horrible allergic reaction to MRI constrast almost a year ago. I will truly appreciate your feedback. My neurologist has referred me to Dr Chemali in Norfolk, VA and I have an appointment with him in September so I wanted to do some work before seeing him to figure out this madness that's affecting my body. Thank you very much

Thanks Corina, I'm happy to had find this wonderul forum Natops, It does sound like yours is abnormal as well. I had my testing done with a neurologist in Virginia Beach , VA. I'll be following up with Dr Chemali in September to go over my results and care since my neurologist doesn't know what to make of it either. Google your results. There's some info out there on yours online. Mine on the other hand...zero. I called therapath and they told me that unusually high can also represent a disease process but I haven't been able to find anything about too high numbers. I think the test looks at 1. density fo the fibers, 2. appearance and 3. size of the fibers, so you can have a low, normal abnormal density fibers with appearance and size of the fibers being something else. I will get some answers when I see Dr Chemali in September. Thanks for your response

Hi all, I'm new to this forum. I wasn't sure how many of you have neuropathy in addition to Pots and other dysautomonia symptoms I'm having a work-up for small fiber neuropathy due to abnormal QSART testing and history of dysautonomia symptoms. I have history of Pregnancy induced POTs. My results for skin biopsy were normal for my calf and thigh but the pathologist states that my specimen was "unusual and extremely high". highest for thigh is 17, normal 8, my was 28. My numbers was higher than their highest level with Therapath and it also states that it maybe "unusual form of small fiber neuropathy". I was wondering if anyone here has had anything similar. Usually for small fiber, the level are low, 6 or below. Thanks