Quote:
Originally Posted by hopeforthecure2016
En bloc,
Thank you! The sarcoidosis was found on accident after an episode of SVT where I went to the ER as I didn't know what was happening. That led to an X-ray which then led to biopsies and all kinds of things. I have known sarcoid in the chest lymph nodes and THAT IS IT. It's not even in my lungs which is GREAT, just so weird that it is attacking my nerves. That is usually late in the course. I hate to say why me, but I am.. HAHA! I am 33 and have some serious living to do with my 3 youngins!! You have given me some hope though. They seem to think there is no reason to treat the sarcoid because I have no symptoms from the sarcoid. Truly the only symptoms that I have are tachycardia, shortness of breath and tingly hands, feet and outer thigh. None of this holds me back. Well the tachycardia and SOB does slow me down SOME, but I was never a runner or anything 
Do people live long lives with SFN / POTS? I understand the quality might not be great, but we are getting some new treatments, right? I know stress isn't good, and I have talked to my family dr about freaking out about this, but I'm scared! It helps talking with others that live this life. I just want some hope that I can at least be here for my kids, even with some disabilities! |
People can lead relatively normal lives with dysautonomia. It all depends on the severity. The treatments are limited for some aspects and widespread for other aspects. Lifestyle changes are a must to adapt to a new way of living when symptoms become severe.
I have had severe dysautonomia for 20 years, and raised my son (now 25). I am disabled, but I can function in my own way through lifestyles changes, acceptance and adapting to new ways of doing things. You must have a positive attitude (which it sounds like you do) and not dwell on what you've lost...but stay focused on what you still have.
Your kids will learn to adapt as well, and even help you out when they can.
There is always research, so I'm sure there will be new treatments 'if' you need them...which you may not.