Yes Brain I may but also may not need one.
This Nutritionist I see (have an appt this Thursday) has an evaluation tool, computerized now that picks up WHERE and what is toxic or deficient to the amazement of all my docs.

First I need to get a PCP for my BP med and then this nutritionist who makes recommendations too. I'll run this endochronologist past him too.

Thanks...good to SEE you Cathy and Sarah

Jan

Hi Jan, I get Iritis also, do you get acute glaucoma from it?, hope not,

curious isn't narcolepsy a sleep issue?

Jan that's how it started with me too always a chest pain numbness on that arm slurred speech vision and they started telling me to go see a diff kind of doc:yikes:, Then one time same symptoms but this time add a very severe headache, they ruled out the heart /stroke, then they had to dig deeper to find headache issue, that's how they finally found the MS

I hope you start to get some answers in a positive way, you have already made the first step, try to hang in there :hug:

Hi Jan,

I have brain stem lesions. Some on my pons and a couple on my medulla. And guess what? I have dysautonomia too. I am not sure why your neuro is dismissing this issue. Our brain stem controls our autonomic systems. You get one well placed lesion, and bingo. You have big problems.

I have swallowing issues, temperature control problems, tachycardia, blood pressures that are all over the place (high and low), fast respiratory rate, shortness of breath (for no reason), fainting episodes, sleep apnea, etc. These are all autonomic problems. You do not have to be far along in a disease process or in my case and yours, even diagnosed with a particular disease to have this problem. One badly placed lesion and you can have issues.

My brain stem lesions enhanced for over a year and a half. They had never seen anything quite like it before. Even after several rounds of steroids, they just kept enhancing and more kept coming.

There are people that have dysautonomia for no known reason and they have no brain stem lesions and will never have lesions. It is very difficult to get treatment for this problem and to get a diagnosis. I was lucky as both my internist and my neurologist recognized what was going on.

I am so sorry that you are having this problem but I wanted you to know that you are not alone. I hope you can find a physician that is versed in this problem and that can assist you in treating this complicated diagnosis. September 1st will be here tomorrow already so try to find a doctor to help you. Good luck. I am sending you good thoughts.

jan,

something cherie said made me think of this;
perhaps if you saw a geneticist they could find something. the real thing.
?

WOW Pacifica you are so very helpful. And yes Nurse Nancy I will talk to my new doc about all of this. A geneticist..hmm..Thats a thought too.

Pacifica I think I will PM you if you do not mind to get more details. This autonomic problem has been around over 13 years and getting worse in that more things are happening more and more. I just cannot afford to lose time from work since I am on probation.

I pray I will find the answers... thanks everyone.. it means so much to me.

Warmly, Jan