Christinvme

On 3/19/2019 at 12:24 PM, bombsh3ll said:

I have EDS too, hypermobile type. My dad also has an aortic aneurism and some other features but only me with POTS. 

Recently, I got myself scared witless about having the vascular type of EDS. Particularly as I have very high BP spikes. (note these aren't a symptom of vEDS you just really wouldn't want them with fragile blood vessels). If you get reading & find yourself worried like I did, there is a lab you can send off your saliva to for 250 USD for genetic testing to rule out the COL1A1 and COL3A1 mutations that cause vEDS. It is called INVITAE. 

I sent off a sample and thankfully tested negative which gave me great peace of mind and the turnaround was very quick. I live in the UK and sent it via fedex.

This may not be on your horizon but I would hate to think of someone else panicking like I was, not knowing where to turn when there is a reasonably accessible way to put it to bed (or if positive get appropriate management).

B xxx

I will look in to that, thank you!

On 3/18/2019 at 11:45 PM, gackedo said:

Did your doctor evaluate you for the possibility of having Ehlers-Danlos Syndrome. It can be associated with dysautonomia-but it can also cause aortic dissections and you mentioned that is how your dad passed away.  Please look up some information about EDS and ask your doctor about it at your next visit.  Just to cover all your bases. 

I get all the eye symptoms as well as well as the red swollen fingers. That’s from venous pooling.  I can’t get my rings off anymore. Someday I’m going to have to get them cut off!

Thank you, I just saw this. I will do! 

Hello, 

Currently using a DR at the MVP/DYSAUTONOMIA center in Vestivia. Has anyone used any of the Neurologist at UAB for treatment. I have gotten some good help there butI am having symptoms that do not want to be addressed. This is discouraging for me. Thanks for any advice or tips!

Thank you all for your answers. I am waiting for my test results. I asked they be mailed to me. The dr did not tell me the results.  But I go see the dr again next week and will have my list of question. After years of being told it was anxiety I was shocked when she told me I had Dysautonomia. My mind went blank.My dad had it but sadly passed away in 2013 to an aorta hemorrhage. So I can't ask him for advice.   The clinic I go to is specifically for Dysautonomia and MVP. So I feel confident the dr will help me get to betyer health, I'm only 29!

As for the low bp. This is new. And I can tell it makes me feel really bad. 

As for the eyes I will rest in the knowledge that my last eye exam was perfect and just take it as it goes.  

Hello. I have had symptoms for around 10 years but was finally diagnosed a few weeks ago. I have been hydrating, increasing salt, starting light exercise. And general paying attention to what my body is telling me. I am having a few symptoms I am not sure re Dysautonomia related.

- vision disturbances; floaters, blurry vision, things looking like they are moving when they are not. I had a eye exam last year and all was well. 

- low bp at night only. When laying down 90/50. No clue why. 

- By the afternoon my hands are red, hot and a little puffy. 

I have the other normal symptoms: hr and bp problems. GI issues. Dizziness and balance. Heart palpitations. Joint pain and pins and needles. Migranes with aura. Had tilt table, echo and stress test when diagnosed.   

Looking for some advice with the "odd" symptoms. I feel better hydrating but still not great but better than I was 6 weeks ago. Any advice is appreciated. Thank you.