Back From The Doctor Today

[sstephan]

Well I am back from seeing Dr. Gilden today and it was a very very long visit. She did a five hour glucose test today and I had my blood drawn and blood pressure taken every half hour. She feels as though there is a relationship between my blood sugar and blood pressure. It will be interesting to see the results. However, she will not get the results for a week or so. Therefore, she did not want to start me on the Midodrine today. I was so hoping to leave the office today with some sort of a treatment plan but she says we are still in the diagnostic stage. She knows that I have dysautonomia, she wants to look into it further to see if there is an underlying cause or other issue.

The entire doctor situation is just so frustrating. For those of you who see a pots specialist at somewhere other than your own hospital, who do you refer to for day to day problems? Dr. Gilden is through ST Mary of Nazareth Hospital in Chicago. My docs are out of Lutheran General Hospital in Park Ridge and no one communicates with Dr. Gilden. To be quite honest, they don't understand what she is doing and I think they just write out the referrals to me just to appease me. But when I am in autonomic crisis, I am left with the emergency room at Lutheran and doctors who really don't understand what is going on. Dr. Gilden is like a consult basis and then I have my primary care doc, cardiologist, GI doctor, and neurologist. (none of whom which communicate or know much about dysautonomia) I feel lost. What do I do and who do I go to first? I have a fear of traveling now because I feel like the only doctor who gets this is Dr. Gilden and I am afraid to be too far away in case of trouble. Furthermore, Dr Gilden is only in her office two days per week and is difficult to reach. I guess I just feel frustrated and confused and not sure where to go with all of this. What type of doctor manages your cases and who do you consult with? Furthermore, those of you who see a specialist at Mayo or another clinic of the like, do you go there just for consult or treatment? How do you then confer with that doctor? I am very very frustrated and have been dealing with the doctor mess for quite some time. Not to mention that I have an HMO and Dr. Gilden is out of network. (another huge headache I am still dealing with)

AND then today I had a heart rate episode during the test and my blood pressure sky rocketed! What was that? My blood pressure was running very very low- eighty over fifty

Could anyone offer any advice? Thanks for listening.

Susan

[bttrflyamby1981]

I don't know what advice I can offer, but I don't see a POTS specialist. He's just an average Cardio. He knows very little about POTS, but has been so helpful in trying to find answers as to what is going on with me.

I hope you find answers soon!

Amber

[maggee]

hi susan!

this doctor maze...a dang nightmare.......

we are all there..or been there....at sometime...for tooooo long!

anyways, wanted to tell you what works for me:

****come off all refined sugars!===cake,cookies, ice cream..etc....

****if you eat fruit----balance it out with pecans, or low fat cottage cheese, or protein of some sort==as need to balance carbs/proteins in a 2:1 ratio.

saying this, as i read in dinet info===that w/dysautonomia....we have may have metabolism prob----such as===when we cause INSULIN SURGES----like by eating too high refined sugar/carbs==>our bods can go into hypoglycemia episodes....AND ALSO WE PRODUCE MORE ADRENALINE---CAUSING MORE POTS SYMPTOMS.

ALSO--I try to....get some high quality virgin coconut oil...and eat but a 1/2 to one tsp. of it before you eat anything===which apparantly cuts down on the insulin surges.

just my interpretation of what i read, and doing it helps me control my symtoms.

let me know if it helps you any, hun!!!!

write me a PM or email if you want more info

((((hugs)))))

maggee

[mom4cem]

The dr. business, it is tough to get coordination. Have you asked Dr. Gliden if she knows of or can recommend someone near you to coordinate your care, who at least may be a bit familiar with dysautonomia and she can converse and consult with for your care?

I agree about the insulin surges. I just went to see a former dr of anesthesioligist turned doctor of D.O. He spent over two hourse with me, I took an extensive questionairre, with background history, symptoms etc., I had my hubby sit in with this consult. He went over everything, told me what he thought was going on, what he thinks will help. His first thing when I originally called him on the phone to set up an appt., he right away said that it was a sympathetic overload, adrenal crisis, probable hypoglycemia and hormonal imbalances. The questionnaire proved to show the same. I went for some blood work that was not performed by my primary. He recommended licorice root, some adrenal support support, vit c, vit d, and a few other supplements. Many of these things he said would not be long term. I have to follow a hypoglycemic protocol, add more protein, liberally add celtic sea salt.

Point of the story....maybe there is another type of dr. out there who is familiar and can offer help. A d.o. does residency in internal medicine can write rx, etc.

[nadine]

I do not see a specialist for dysautonomia, but wondering if yours could write a suggested care plan or contact info for your local MD and hospital.

Would she be available for phone consult if hospitalized? I know she is only in a couple days a week -but maybe you could discuss the- what if plan, meaning emergency care. I understnad that she may not be affilited with your hospital, but as a speicialist- they could perhaps use her for phone input.

Just might be nice to have something in your hopsital record from her, so they know what her care plan has been and her thoughts on your condition.

[Jacquie802]

Hi,

I just wanted to let you know that my BP goes up when my heartrate does too....