Finally, success with a local doctor!

[SOC]

Daughter and I both saw a cardiologist recently about OI issues. She's POTsy, I'm more hyperadrenergic POTS. He actually read up on ME after the first visit, and prescribed appropriately for ME patients. It's so weird and wonderful to be taken seriously by a local doctor, that I'm a mix of stunned and thrilled.

Three cheers for the Primer, I think it made at least part of the difference in this situation.

If you need a cardiologist for autonomic problems and you're in the central Illinois area, I've got a name for you.

 

[*GG*]

Good to hear!

GG

 

[WillowJ]

excellent

 

[Little Bluestem]

I'm almost sorry that I do not have autonomic problems. If you find any other good ME doctors in central Illinois, be sure to let us know.

 

[SOC]

I'm almost sorry that I do not have autonomic problems. If you find any other good ME doctors in central Illinois, be sure to let us know.

Hah! I don't have much hope in that direction. "Evidence-based" medicine with emphasis on CDC information is big in the Carle system which pretty much runs medicine in this area.

I have had better luck with local docs by carrying in the Primer http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf with the parts I need help with stickied and highlighted. I also give them the guideline.gov link http://guideline.gov/content.aspx?id=38316. That seems to help them see that everything's aboveboad and official-like. And they don't go immediately to the CDC for info, which is a help.

Getting the local PCPs to run useful tests has been nearly impossible, but our latest PCP, while unwilling to take on ME/CFS, has (so far) been cooperative with what Dr Rey wants. I'm keeping my fingers crossed.

 

[SanDiego#1]

Daughter and I both saw a cardiologist recently about OI issues. She's POTsy, I'm more hyperadrenergic POTS. He actually read up on ME after the first visit, and prescribed appropriately for ME patients. It's so weird and wonderful to be taken seriously by a local doctor, that I'm a mix of stunned and thrilled.

Three cheers for the Primer, I think it made at least part of the difference in this situation.

If you need a cardiologist for autonomic problems and you're in the central Illinois area, I've got a name for you.

SOC

Great news. I live in Atlanta and my CFIDS Dr. just found out I have Diabetes Insipidus. Thinks a lot of my symptoms- he believes is coming from this. I still have POTS and DD but starting on Desmopressin tomorrow.. My Physician is not in the Atlanta area. So communication in an emergency is not the best. Hope you do well with new Cardiologist.Wish I had one here that took this Disease seriously.

San Diego #1

 

[Tristen]

Hah! I don't have much hope in that direction. "Evidence-based" medicine with emphasis on CDC information is big in the Carle system which pretty much runs medicine in this area.

I have had better luck with local docs by carrying in the Primer http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf with the parts I need help with stickied and highlighted. I also give them the guideline.gov link http://guideline.gov/content.aspx?id=38316. That seems to help them see that everything's aboveboad and official-like. And they don't go immediately to the CDC for info, which is a help.

Getting the local PCPs to run useful tests has been nearly impossible, but our latest PCP, while unwilling to take on ME/CFS, has (so far) been cooperative with what Dr Rey wants. I'm keeping my fingers crossed.

Gotta agree with ya there. My me/cfs evolved over ~12 years from immune type symptoms (always a flu like illness with sore throat, swollen glands, etc) eventually into neuro with OI, POTS, NMH, etc. I would take the Immune stuff anyday over the Neuro which was by far more brutal.

Awesome that you have found a good doc. Happy for ya!

 

[SOC]

SOC

Great news. I live in Atlanta and my CFIDS Dr. just found out I have Diabetes Insipidus. Thinks a lot of my symptoms- he believes is coming from this. I still have POTS and DD but starting on Desmopressin tomorrow.. My Physician is not in the Atlanta area. So communication in an emergency is not the best. Hope you do well with new Cardiologist.Wish I had one here that took this Disease seriously.

San Diego #1

I've wondered about Diabetes Insipidus myself. I haven't done enough research in the area to know if there's a distinct difference between low blood volume and DI. Another thing to add to my list of things to learn about.

 

[SanDiego#1]

I've wondered about Diabetes Insipidus myself. I haven't done enough research in the area to know if there's a distinct difference between low blood volume and DI. Another thing to add to my list of things to learn about.

SOC- I still have Pots also. My CFIDS Dr. said Desmopressin would help DI , DD and Diabetes Insipidus. Guess what I took ONE DOSE OF DESMOPRESSIN and did not sleep for 18 hours. He is saying it is something else. I am saying it is Desmopressin. I even cut the dose rec to half. TO BE CONTINUED.!!!!! PC WITH HIM THIS WEEK TO DISCUSS.

SAN DIEGO

 

[SanDiego#1]

SOC- I still have Pots also. My CFIDS Dr. said Desmopressin would help DI , DD and Diabetes Insipidus. Guess what I took ONE DOSE OF DESMOPRESSIN and did not sleep for 18 hours. He is saying it is something else. I am saying it is Desmopressin. I even cut the dose rec to half. TO BE CONTINUED.!!!!! PC WITH HIM THIS WEEK TO DISCUSS.

SAN DIEGO

FORGOT TO MENTION-HE SAID IT WOULD IMPROVE BLOOD VOLUME LEVELS.

SAN DIEGO

 

[Tristen]

Hey SanDiego,

Diabetes Insipidus surely could act like me/cfs in some ways. I looked into that years ago but don't rememeber why I had decided against it for myself. Don't even recall the testing we used. Was it some kind of acth challenge test?

Here's hoping DI, a treatable disease, is causing lots, if not all of your symtoms.

 

[SanDiego#1]

Hey SanDiego,

Diabetes Insipidus surely could act like me/cfs in some ways. I looked into that years ago but don't rememeber why I had decided against it for myself. Don't even recall the testing we used. Was it some kind of acth challenge test?

Here's hoping DI, a treatable disease, is causing lots, if not all of your symtoms.

Tristen- It is by no means causing all my symptoms. I have CMV, EBV, ME, POTS, DD. The only reason this came up as I was thirsty all the time and was drinking gallons of water and urinating all through the night. I looked it up on internet.
If not treated it can be fatal as you stay dehydrated. My Physician is saying only Desmopressin will treat it. Took 1/2 the dosage I was supposed to take and did not sleep for 18 hours. Was really wired.We have a phone conference for Friday. You should be tested for it. I had to take a 16 hr. Water deprivation test. Even if you were tested before, if it was awhile ago, you need to be retested. A lot of people who think they have POTS actually have DI. The earlier it is tested the easier to treat.Will let you know what we decide. Thanks for your interest.

I learn so much from this site.

Stay well,

San Diego

 

[SOC]

SOC- I still have Pots also. My CFIDS Dr. said Desmopressin would help DI , DD and Diabetes Insipidus. Guess what I took ONE DOSE OF DESMOPRESSIN and did not sleep for 18 hours. He is saying it is something else. I am saying it is Desmopressin. I even cut the dose rec to half. TO BE CONTINUED.!!!!! PC WITH HIM THIS WEEK TO DISCUSS.

SAN DIEGO

Keep us posted on how the desmopressin goes. It's not sounding good at the moment, but maybe it will get better as your body adjusts. [fingers crossed]

I would be miserable doing a 16 hr water deprivation test. I hope I don't have to.

 

[SOC]

Gotta agree with ya there. My me/cfs evolved over ~12 years from immune type symptoms (always a flu like illness with sore throat, swollen glands, etc) eventually into neuro with OI, POTS, NMH, etc. I would take the Immune stuff anyday over the Neuro which was by far more brutal.

Awesome that you have found a good doc. Happy for ya!

Interesting. My lack of health evolved similarly. I started hyper-immune, reacting to everything, then switched to pain and fatigue (after a sudden onset flu-like episode), then flu-like, then neuro. I wonder if that's just coincidence or if there's a similar pattern in long-time patients.

 

[SanDiego#1]

Keep us posted on how the desmopressin goes. It's not sounding good at the moment, but maybe it will get better as your body adjusts. [fingers crossed]

I would be miserable doing a 16 hr water deprivation test. I hope I don't have to.

SOC
Tests was overnight -one afternoon late blood draw then next AM. I at first told him I couldn't do it. but he said I could have a few sips before midnight .I always felt something else was wrong.

San Diego

 

[SanDiego#1]

SOC
Tests was overnight -one afternoon late blood draw then next AM. I at first told him I couldn't do it. but he said I could have a few sips before midnight .I always felt something else was wrong.

San Diego

SOC
Tests was overnight -one afternoon late blood draw then next AM. I at first told him I couldn't do it. but he said I could have a few sips before midnight .I always felt something else was wrong.

San Diego

 

[SanDiego#1]

Interesting. My lack of health evolved similarly. I started hyper-immune, reacting to everything, then switched to pain and fatigue (after a sudden onset flu-like episode), then flu-like, then neuro. I wonder if that's just coincidence or if there's a similar pattern in long-time patients.

SOC a lot of the patients that have had this as long as have had it -over 20 yr. go into OI and then more Neuro and then DD.I also think we can't recover as quick. I was a long distance runner than walker for years after I got this. Had to change my distance. However 2 years of serious stress-put me down about 2 years ago.
It doesn't mean everyone will do that. I love my Dr. -However he is 4 hours away. Wish I had one closer as a backup.

San Diego

 

[SanDiego#1]

SOC a lot of the patients that have had this as long as have had it -over 20 yr. go into OI and then more Neuro and then DD.I also think we can't recover as quick. I was a long distance runner than walker for years after I got this. Had to change my distance. However 2 years of serious stress-put me down about 2 years ago.
It doesn't mean everyone will do that. I love my Dr. -However he is 4 hours away. Wish I had one closer as a backup.

San Diego

Meant to mention- CFIDS Dr. said this disease compromises every part of your body. Has to be cleared up in the GUT.

San Diego

 

[Creekee]

Gotta agree with ya there. My me/cfs evolved over ~12 years from immune type symptoms (always a flu like illness with sore throat, swollen glands, etc) eventually into neuro with OI, POTS, NMH, etc. I would take the Immune stuff anyday over the Neuro which was by far more brutal.

Awesome that you have found a good doc. Happy for ya!

Tristen,

You've described my "evolution" exactly. Have seen a big shift in symptoms the last could of years. Sore throat and swollen glands have nearly gone after 33 years; special new neuro stuff now dominates the scene. I've noticed a lot of my new icky symptoms correspond to protomyxzoa rheumatica, specially Ann Corson's list. I'm positive for the PR; have you been tested for it?

Best,
Creekee

 

[SanDiego#1]

Tristen,

You've described my "evolution" exactly. Have seen a big shift in symptoms the last could of years. Sore throat and swollen glands have nearly gone after 33 years; special new neuro stuff now dominates the scene. I've noticed a lot of my new icky symptoms correspond to protomyxzoa rheumatica, specially Ann Corson's list. I'm positive for the PR; have you been tested for it?

Best,
Creekee

Creekee- What is PR??

San Diego