Roxy

Thank you everyone, I am hoping many more of you find great people to help out. The word is spreading about dysautonomia, we just need to keep hanging in and taking it day by day.

I had an awesome doctors appointment today! I just wanted to let you all know that there are doctors out there that are understanding, respectful, willing to listen and then go out of their way to help. My doctor (cardiologist) is going to be the team leader, he is getting me in with neurology, rheumatology, immunology/allergy, GI, and women's health/urology. Then he is going to coordinate all those and all my other doctors to get a treatment plan and to make sure we are all on the same page. I am not putting going to the Mayo clinic out of the picture yet, we are leaving that door still open. This is the same doctor who is putting in my implantable loop recorder this month. Yes, one big step forward.

sorry about any grammar/spelling issues (brain fog)

That the veteran in countered/was exposed to

Sorry forgot to mention that the VA recognizes some illnesses in Vietnam veterans, and  Desert Storm veterans children as caused by contaminants they in countered. 

My father was in Vietnam with the agent orange, he had heart issues, diabetes, cancer, and Parkinson's like issues that VA said was from it. A few doctors I have seen in the past have wondered if it is possible to be environmental in nature or at least a component, because we are now having contact with so many synthetic and poisonous things we were not meant to. I asked what they meant, they started with a simple question, what do you put in your body everyday? Well I thought about it and did more research, farms and ranches use a lot of pesticides, antibiotic, growth hormones, and when our food is processed it has other chemicals like dyes, preservatives and such. Then I looked at what clothes I was wearing, the house I was living in, where I was living, the work I was doing...I am not saying this is the main cause but it may contribute to the issue. It could mean are more susceptible/predisposed to these issues. They have found out that some cancers are that way, so why not dysautonomia. 

Thank you, I have awesome lawyers, we are getting ready to go for another hearing, keep fingers crossed and say prayers. Don't think we will have an answer for some months, but I can hope. We are having to break each diagnosis down into its individual components... Syncope, dizziness, blood pressure, heart issues, gi issues, instead of just postural orthostatic tachycardia syndrome...and then explain in very detailed notes how it impacts my life and possible work. (for every diagnosis I have). Tell me all of my doctors are happy about doing this (using the medical codes and write ups). Hope anyone else that is applying for SSDI have a much easier time.

A lot of my tests come back normal but in the high or low range of "normal" and a couple of my doctors have said that the  normal medical ranges may not be my normal range. It has been a lot of trial and error to find out what works and what my normal is. Good luck with the new b12 test.

Momandmore and Katybug you have described what happens to me so well, I was beginning to think I was the only one. I have heavy socks, gloves and throw blankets all over the place. I also have a cooling vest and lots of ice made. One minute I am so cold and beyond tired, sleep is the only thing that helps. Then I can be so hot I feel like I am on fire or melting. My doctors are saying that it is the dysautonomia affecting my temperature control or lack of it. I have to dress in layers so I can stay warm, or be able to strip to get cooler.

Welcome everyone, since I joined, I have found the people here to be caring, funny, knowledgable, non-judgemental, and just all around great human beings. Glad you joined, see you on the forum

I am trying to find anyone else out there that has been able to get Tricare to cover specialty care (Mayo, Cleveland, Vandy) how you did it or if you are having the same issues I am. I am also trying to see if anyone knows how to get SSDI approved, on year 5 fighting with them, what codes doctors might use that would help. I have POTS, NCS, Cluster headaches, asthma, stomach dumping, gerd, pituitary lesion, adrenal gland mass, esophageal spasms, low vit. D, arthritis, psoriasis, reynauds,gi issues, major allergies ( meds, insects, environmental, materials...) many more issues. I am on 21 meds plus all the dme items. All my doctors say it is not possible for me to work, just daily living is an issue, thank goodness for a understanding and much overworked husband who helps a lot. 

Thank you for the help I am checking on the doctors who do the TTT and also checking on out of state doctors. It is beginning to look like they will have to send me out of state.

Just checked on Las Vegas branch and they treat MS, Parkinson's, Huntington's, Alzheimer's, TBI, and Dementia. Will keep looking, thank you for all your help

Thank you SarahA33 I checked the list just now but no one listed for NV, I am in the military medical system, so before they will let/send me anywhere but Las Vegas I have to have proof that no doctors treat, diagnose pots or ncs in my area. I have been calling neurologist down the line in the phone book and already called the local hospitals but no luck. 

Hi I am new to this forum, but have had pots and ncs for 10+ years. We moved to Las Vegas NV recently and am having a hard time finding any doctors in the area. I was also wondering if anyone has had any success with a cooling vest? My other problem is I seem to be allergic to everything, any ideas?