Quote:
Originally Posted by Sallysblooms
No, I am healing the Autonomic Neuropathy (Dysautonomia/POTS) with supplements and diet. It is going very well! I was unable to sit up or walk. Now I can walk and do more.  I have also had CFS for many years and that is doing really great.
To answer your question, my hands used to be cold and my feet also. I wear socks or SOFT UGG slippers at home. Even in summer, but the AC is on keeping me cool. With Dysautonomia, you cannot keep your temperature regulated. My hands and feet are much better now. I can go without slippers and sleep without socks now. I am improving.
I hope you can figure out exactly what is wrong. With Dysautonomia, everything automatic stops working so there are many problems. Adding that to CFS and wow, it is a mess. |
Hey Sally,
It looks like my Neuro is moving forward with sweat test and tilt table to prove out dysautonomia. I wish I could rely on getting better with just supplements, but I have been on the supplements/diet for a few months and I am still add symptoms each month. (I realize the supplements can take a while)
So, the first plan of attack is IVIG. I am apprehensive about it, but I feel like I am backed up against the wall. My quality of life is sucking wind right now!
Is there any advice you have for me of things to watch out for? Do you monitor your blood pressure daily for spikes and drops? Do you see certain types of doctors regularly?
I am going to look for a Integrative doctor (like yours)where I live and see what he/she has to think about my case. I am working to feed my mitochrondia, but I get very little exercise, so the axons dont have much work to do. I have been super athletic for 22 years, and now I can hardly walk. It is killing me inside, I must get back to some form of exercise or I will never get better. Just being able to get the diagnosis in relatively short time is a huge weight off my shoulders and I consider myself blessed. I feel so sorry for others who struggle with this relentless disease and never get a diagnosis or wait an exorbitant amount of time. I was lucky the the neuro did not give up, although he tried three times. I explained to him that I was not going anywhere and we were going to figure this thing out together. Not sure he really wanted my help, but he got it and he is being very helpful now. Guess we have learned each others personalities and we try not to step on each others feet now