Maxine

Hi Sarah,

Here's a link to the Mayo Clinic:

http://www.mayoclinic.org/neurology-rst/autoneurogroup.html

I heard that many people have had good experiences there, and NIH. Also Dr. Grubb in Toledo is very good, but it may take a while to get in to see him.

I hope this helps a bit............

Maxine

Morgan,

Please let us know how your appointment goes.................

I'm sorry that you have to wait like this.

Take Care,

Maxine

Hi,

I can't seem to get my PCP to take me seriously. I am going to be having a 64 slice cat scan in place of a colonoscopy due to high sensitivity to drugs. The surgeon who I saw for the colonoscopy wanted to go this route first------she saw my BP that day, and it was running really low---80s/something---and then they took it again and it went up to 90/60----this was sitting-----so you can only imagine what it was standing.

If something shows up on the c-scan---then I'll have to do the colonoscopy----but she will admit me to the hospital, and have an anesthesiologist present for the procedure.

I don't have the real low BPs all day long everyday---it fluctuates----but it's been running pretty low---more then it did in the past.

Anyway---I also have upper cervical spine/chiari issues along with instability at the cervical/cranial junction---most likely due to EDS. As a result of that I have constant pain which varies from mild to severe throughout the day---and spasms that spread into my chest.

The surgeon and I thought we would also do a cardiac C-scan the same time I have the virtual colonscopy----WHY NOT. The reason is because I have long standing low HDL (27)---and moderate LDL/Borderline (127)---and triclycerides---of 205--Total 195. I told her I would feel more at ease if I could have this done. She agreed it was a good idea, but my PCP would have to order it. WEll that was a mistake. When I called my PCP---she said go to the ER if your having chest pain. I told her I have pain everyday that spreads from my neck/clavical/upperback into my chest---and it's hard to tell sometimes if the pain could be cardiac related. My feeling is no----but I would like to play things on the safe side.

This type of C-scan is recommended by cardiologists for people with chronic low HDL. I have always followed a very low fat diet---and it could be secondary to that---no good fats, but any surgars I ate---even if low fat----would elevate triclycerides. Hashmotos thyroid doesn't help with the cholesterol either-- Of course my health problems prevent any type of aerobic exercise, and the pain makes it difficult to do weight bearing exercise----ect. I do legs lifts, and other mild types of exercise. The fatigue is relentless---and I'm just happy to keep up my house on good days.

I'll probably need to call the cardiologist I saw a couple years ago. He did do a stress echo about 2 1/2 years ago---and he said it came out fine. I also have an implanted cardiac loop recorder-----and I get ECGs downloaded every couple of months or so---but it's not a 12 lead---6 lead-----it's to check for arrhythmias.

What is it with docs today---I can't even get her to set up an appointment to see me.

Any insights?

Maxine

Dizzygirl!

What are we going to do with you---I'm worried about you!

What hospital are you going to?

I'm sending prayers for healing energies-------------

Your going to be OK---hang in there dear......

Maxine

Oh Morgan,

I'm sorry that you didn't get the proper care right away for this. It never stops surprising me---these ignorant Docs. Why he would think prozac would help is beyond me...............

They should not make you wait like this---not when you have pausing like that going on. Clearly, this man doesn't know his a** from a hole in the wall.

Gee---I didn't know prozak was used for treating arrhythmias...........dingy me----what was I thinking taking this propranolol------------- (SARCASM)--------ick.....

Some of these doctors(or doctor wanna-be) are a train wreck waiting to happen.

Maxine

Congratulations AMY!

Hi-----I don't have a specific problem----I was just wondering if anyone ever had problems taking multi vitamins with sugar substitutes----side effects---ect................................

I took my first one today-------------I didn't seem to have a problem with the sugar substitutes in the chewables. I know that some of us have problems with some of the sugar substitutes----so I thought I would ask if anyone has taken the chewable vitamins----centrum---ect

Thanks---------

I find that quite interesting---because a physician assistant told me to take clonopin daily--for "hyper adrengic" POTS............ however, my BPs were running 80/60---and sometimes lower.

I don't think they believed my BPs were that low---even though I gave them 6 months worth of BP readings------------ Needless to say I never took the clonodine----as I was already on a beta blocker.

My catecholamines were tested---they were normal----

I don't think this is a drug that should be prescribed that way---"take as needed".

Maxine

I went to a chiropractor in 1995, but I went for my hips/pelvis area---because it was displaced from the birth of my son----very narrow pelvis----and somewhat narrow hips.

I would never recommend one for the neck-shoulder area at all---this is such a delicate area, and if you have something wrong in this area---it could be made worse, and it could affect your dysautonomia in a negative way.

Bee is on the right track ---heat for muscle pain, and Ice for any other type pain. Ice works well for my neck/cranium area. I have a lot of upper spine issues---and I already had one surgery. I just feel your going into unknown area's, and if you have an undiagnosed condition with your neck, a chiropractor could make it worse, and you may not be able to reverse it. Taking an Anti-inflammatory is helpful also.

Maxine

Have you heard of the coat hanger effect? Here's a link from a post in Feb. 2006.

http://dinet.ipbhost.com/index.php?showtop...t+hanger+effect

I know that EDS, chiari related conditions, congenital cervical stenosis can all cause pain in the same area's also. You can do a search on these conditions and find out more.

Maxine

Thanks---lThomas

I am wondering if anyone has side affects from centrum chewables----and the Aspartame. **Phenylketonurics: Contains Phenylalanine.

Thanks for taking the time to look up the links on Centrum....but that was the first thing I did--looked up what was in it.

WE POTs folks have high sensitivities to many things----even simple foods. It's as if our body is in some kind of autoimmune response..........you just can't be too careful.

Maxine

Hi,

I was wondering if any of you are bothered by multivitamins----i.e.----Cetrum chewables?

It does contain Aspartame. **Phenylketonurics: Contains Phenylalanine.

I really need to take a multivitamin...........

Maxine

I often get sudden fatigue---and usually weakness comes with it.

I don't always know how I'm doing until I venture out, and if I'm going to have a bad day, I will find out quickly. I can be OK one minute, and then feel like the wind is knocked out of me the next.

Maxine