Hi there:

Sorry to hear about all of this. The doc fiasco is NOT fun... I have found, as Sue mentioned, that another set of ears at my appointments seems to make a big difference. My husband tries to go with me, if I have to see one of the Dr. Wicked's... It shouldn't be this way in this day and time, but it is amazing what the presence of a man will do in an office visit.

I wish Glenn could go with you to the doctor. In fact, I wish he could go to the doctor with me. I think he could hire out as an escort and make a killing. He is very knowledgeable, and I get the distinct impression that doctors think twice before treating him like a second class citizen. Not that my husband can't speak up, It is just different and he tends to be more softspoken... Still, it helps for him to be there, because usually most doctors will think twice before acting like arrogant a**es in front of someone's spouse, mother, brother or even a friend...

Once I had a surgeon act this way to me. My friend was there with me. He said there was nothing he could do for me and neuro tests were very expensive. My friend, a very tiny loudmouthed nurse, jumped up and told him I could afford $10.00 for tests, did he think that would be enough... He was so embarrassed, he didn't know what to say. I never think of things like that quickly enough... Yea nurses!!!

Try taking someone with you and see if you notice any difference. If not, time to doctor shop...

We are here for you if we can help...

Cathie

thanks Cathie,blush blush!! Yes PN can hurt in all those places,why not
post in both,wouldn't hurt (sorry about that} could only help. Sue

Better yet, maybe you could take both Glenn and Shiney Sue... I bet that would get some results...

Cathie

I'm brand new to the site so this may have been mentioned before-- you mentioned POTS and some other symptoms that aren't pots related, but close enough to some of the things I'm experiencing. Dr. Blair Grubb is the kindest and most brilliant doctor you will ever meet. He is the authority on dysautonomia and he's also very familiar with the link between Ehlers Danlos and dysautonomia (POTS, PAF, MSA, ect.). He's in Toledo, OH if anyone wants to see him. But be prepared for a wait--his waiting list is between 6mos to a year. I assure you that he's worth the wait.

I hope this helps,
Renee

other boards here as we usually have mulitple issues. I suggest you read past posts here, those under chronic pain and those under peripheral neuropathy to find out who we are and what all we have [Please read the 'stickies'/sites that should stick around at each forum and some recent posts to get a feel for who posts what - You might find some questions you have are already answered...so then you can go to the next 'level'. The whole 'thing' about dealing with neuro issues is the 'neuro language'. The technical and medical and laboratory terms tossed around take a long time to get a handle on, let alone explain to a mere moral HUMAN 'IN' this stuff for the first time! Thing about it all is, YOU WANT TO KNOW NOW! Well, a whole lot of what you may want to know is here on these boards, but you mite not be able to asorb it all in a way that's all usable right away. Always remember tho, we are people who HAVE these conditions/diseases...we aren't docs. At times tho, I think we are ahead of our docs in keeping up with what is going on about us for treatments and medications because WE, WE have a very selfish interest in keeping up. We help each other as best we can, how we can, when we can.

I know one really hates to give out info on the internet, but if you find a poster here or elsewhere on the boards who you feel safe asking some things of, go ahead. I have found that no one here is nasty nor has any ulterior motives other than to try and help. I encourage you to read more of Lailavia's posts under the peripheral neuropathy site at:
http://neurotalk.psychcentral.com/forumdisplay.php?f=20
Just click on the 'blue' and you will find others in or near your situation ...or places here or elsewhere to get the BEST info for your needs - j

Has any of your Dr.s mentioned Fibromyagia? With it you have pain all over your body and extreme fatigue. Also, you mentioned dizziness. Do you by chance have a low blood pressure or abnormal heart rate. If so I would recommend an electrophysiologist. Could be an autonomic nervous system disfunction.