Still Know Its Dysautonmia, But What Cause

[Guest malosp]

Hi everyone,

Well, I know I have some form of dysautonmia but I still don't know the cause. As I told everyone earlier I have a appointment with a neurologist middle of May. I finally could take no more and made an appointment with a new doctor - internal medicine. Waiting just kills me lately - I have waited so long already.

The doctor did the standard tests in the office, reflexes etc and ordered some more blood work. At least this doctor checked my reflexes, sense of touch etc. I never had one of the other doctors ever do that. Even though any trained doctor should have been able to tell that I had some form of autonomic nervous system problem from my symptoms that I have repeated and repeated for over eight months....inappropriate tachycardia, HTN?HYPO, dizziness, balance problems, arms falling asleep, extreme muscle aches etc.

The new doctor also ordered an MRI (for tommorrow, I guess he didn't like some of my reflexes) before my neurologist appointment and said the neurologist would appreciate it.

Still waiting for that illusive diagnosis. Thought it was B12 - still could be.

So there is always the possibility of MS, CDIP (which is an autoimmune disease), some type of dysautonmia etc.

It is hard to believe that this time last year I was soooo healthy and took my health for granted. I wonder how long it will take to lose that memory of great health. It is fleeting now even as I type. Life can change in an instant, and of course one doesn't realize that until it is too late sometimes.

I assume there are stages of grief that we all go through when we lose our health. I hope I come to accept whatever my diagnosis is.

I am so grateful to be able least read other peoples posts, and know that there are other people out there that are experiencing some of the same fears as me.

Thanks for a great site. I will let everyone know what my diagnosis finally is. I feel that I will find out soon - it such a shame it could not have been sooner. I was diagnosed with everything from chronic fatique syndrome to CMV to possible endocarditis. It has been a long road.

[mom4cem]

Hi,

I can understand a bit of what you are going through. I have dysautonomia but I don't fit neatly into any category. You almost forget what it was like to feel "normal", what it was like before the symptoms started. I could cry because I have seem to forgetten.

I'm sure all will go well with your MRI and I hope this neruologist can give you some insight and point you in the right direction with treatment.

[halmad85]

Hi and welcome. I'm sorry that you have to be here, but glad you found us. I know the diagnosis stage is very difficult, so I hope you find the answers you need very soon. We are here for any questions you have. These people here are very knowledgable and greatly supportive. Hope to see you around the boards!

[rflood]

Hey, I'm in the same boat with you. I'm going to a big multi-specialty place in mid-May with the hope of finding something out, and not being told that I'm having 7 day long "panic attacks". Just to have someone say "you have dysautonomia" would be helpful. I think there are a lot of leads in my case. I have a chiari malformation and weird environmental and food allergy issues. But it seems like I can't find anyone qualified to help me, or willing to look harder.

I don't know if they'll be able to figure it out for me or not. I'm trying not to obsess over it so much, and trying to adapt my lifestyle and attitude. I'll say one thing: this has been a personal growth experience.

Anyway, I know what you're feeling. It's good to know we're not alone.

[morgan617]

The person who ever figures out the direct cause of this and why we are all so different should win the prize of the century............