Undiagnosed...frustrated w/ Dr.'s..

[IreneF]

What part of the Bay Area do you live in? I'm in SF. It's nice and cool most of the time.

Many people have problems with Kaiser. It's very cookie-cutter.

These sites might help:
http://howto.kaiserpapers.org

https://healthy.kaiserpermanente.or...qU0wm30D7nE8_g!!/dl5/d5/L2dBISEvZ0FBIS9nQSEh/
http://mydoctor.kaiserpermanente.org/ncal/provider/jenniferhan/about/professional?ctab=About+Me&to=1
http://mydoctor.kaiserpermanente.or...thSpecialtyName=&contentTitle=Tilt+Table+Test

Kaiser's tilt table is in Santa Clara

 

[Valentijn]

I don't have a BP cuff but maybe will buy one. Am curious to know if it drops! What do you do to help with your symptoms?

Testing indicated that I have low norepinephrine, which can result in low blood pressure or low pulse pressure. So first I tried an NRI, Strattera, which was very helpful in low doses (10mg) 3 times per day.

Then some research came out showing increased ADRA2A gene expression in ME patients after exertion, which could also result in excessive supression of norepinephrine. So I found the most potent and specific ADRA2A antagonist, which also happens to be a rather cheap OTC bark extract, Yohimbe, and now I take 100mg of that twice per day instead. It keeps me upright, and also helps with my constipation issues.

 

[Valentijn]

@jjgirl67 - I think you should also push for getting EDS investigated and diagnosed. It could help in indicating treatments likely to work, etc, and there might be more useful treatments developed eventually which you'd have better access to if you're properly diagnosed.

 

[jjgirl67]

@jjgirl67 - I think you should also push for getting EDS investigated and diagnosed. It could help in indicating treatments likely to work, etc, and there might be more useful treatments developed eventually which you'd have better access to if you're properly diagnosed.

I have tried...but they said they would not do gene testing as"it's expensive and would not change the outcome". They have noted hyper-mobility in my chart and one dr. noted "possible eds" but that's as far as I got. None of them seem to much about it. I will try again when I manage to get change my health care provider. Definitely want to get my son gene tested as well as I certainly don't want him to walk down the same path getting limited to no support from unknowing Dr.'s.

 

[Gingergrrl]

I understand that--that's why that is the only plan I can get...BUT--no many Dr.'s around here accept it as they say the gov keeps cutting payments... So there are many people i know who have it but can't even find a primary care Dr.

@jjgirl67 Sorry and I think I misunderstood your prior post. I thought you meant that you could only qualify for one plan within Covered CA due to pre-existing conditions but you meant that you could only apply for Covered CA, period. I think I read it wrong.

My husband and I got the Blue Shield Platinum PPO through Covered CA and made sure that it covered the lab where I do all my blood tests and the pharmacy where we get meds (which were two top priorities.) Most of my doctors don't take insurance for office visits, so that part did not change, and the ones who took my prior insurance (Blue Shield through my former employer) also take Blue Shield through CC.

I have never had Kaiser and don't have a primary care doctor so I am not sure how it would compare. Best wishes whatever you decide and hope I did not add to the confusion!

 

[jjgirl67]

Testing indicated that I have low norepinephrine, which can result in low blood pressure or low pulse pressure. So first I tried an NRI, Strattera, which was very helpful in low doses (10mg) 3 times per day.

Then some research came out showing increased ADRA2A gene expression in ME patients after exertion, which could also result in excessive supression of norepinephrine. So I found the most potent and specific ADRA2A antagonist, which also happens to be a rather cheap OTC bark extract, Yohimbe, and now I take 100mg of that twice per day instead. It keeps me upright, and also helps with my constipation issues.

Wow-that's awesome you found a natural OTC!! Very encouraging! I had my epi and norepinephrine tested recently as part of neuroendocrine workup and either one or both were elevated. they said it was probably stress.

@jjgirl67 Sorry and I think I misunderstood your prior post. I thought you meant that you could only qualify for one plan within Covered CA due to pre-existing conditions but you meant that you could only apply for Covered CA, period. I think I read it wrong.

My husband and I got the Blue Shield Platinum PPO through Covered CA and made sure that it covered the lab where I do all my blood tests and the pharmacy where we get meds (which were two top priorities.) Most of my doctors don't take insurance for office visits, so that part did not change, and the ones who took my prior insurance (Blue Shield through my former employer) also take Blue Shield through CC.

I have never had Kaiser and don't have a primary care doctor so I am not sure how it would compare. Best wishes whatever you decide and hope I did not add to the confusion!

Thanks so much for the well wishes and you did not add any confusion. I'm so happy to have stumbled upon this forum, everyone has been so welcoming and helpful, very much appreciated!

 

[jjgirl67]

What part of the Bay Area do you live in? I'm in SF. It's nice and cool most of the time.

Many people have problems with Kaiser. It's very cookie-cutter.

These sites might help:
http://howto.kaiserpapers.org

https://healthy.kaiserpermanente.or...qU0wm30D7nE8_g!!/dl5/d5/L2dBISEvZ0FBIS9nQSEh/
http://mydoctor.kaiserpermanente.org/ncal/provider/jenniferhan/about/professional?ctab=About Me&to=1
http://mydoctor.kaiserpermanente.org/ncal/provider/charlieyoung#tab|1|1|Tilt Table Test|/ncal/provider/charlieyoung/resources/dc/condition?condition=Procedure_Tilt_Table_Test_-_Cardio_EP.xml&ctab=&cstab=&bc=N,mdo,content,lists,regions,ncal,specialties,cardiology_electrophysiology,diseasesconditions_611676.xml&co=providers/charlieyoung &pathName=Default&pathSpecialtyName=&contentTitle=Tilt Table Test

Kaiser's tilt table is in Santa Clara

Thank you--I will check those out. I'm in over in Marin so we're close!

 

[jjgirl67]

I'm curious to know how many of you have an exasperation of symptoms in warmer weather? Last year my cut off was about 90 but now it's more like 80. Also curious to know if meals/stress aggravate your symptoms? And are your symptoms fairly consistent or do they wax and wane?

 

[Sushi]

I'm curious to know how many of you have an exasperation of symptoms in warmer weather? Last year my cut off was about 90 but now it's more like 80. Also curious to know if meals/stress aggravate your symptoms? And are your symptoms fairly consistent or do they wax and wane?

Probably the majority of us have trouble with hot weather. I once had an autonomic doc who wrote a "prescription" for a friend of mine who was traveling to see relatives--it said: "Thermostat to be set for 74 degrees or lower." This was so that her family would take her heat intolerance seriously.

Many of us don't tolerate cold well either--in fact we don't regulate our temperature very well at all--probably due to problems in the autonomic nervous system.

A heavy meal will pool blood in the stomach area and if you have autonomic problems, you often have low blood volume which means less is available to important areas like the brain--this can be a problem!

Sushi

 

[IreneF]

I can handle heat into the high 80s as long as I don't do anything. Basically sitting/lying all day, except for brief periods where I get something to eat or move from the bed to the couch and vice versa.

I can't deal with the heat from a bath or shower.

I often have to sit and "digest" after a meal, but I usually just eat a series of little snacks as I'm home all day.

Cold is not as much of a problem as it used to be. Perhaps because I've gained quite a bit of weight.

 

[Valentijn]

Wow-that's awesome you found a natural OTC!! Very encouraging! I had my epi and norepinephrine tested recently as part of neuroendocrine workup and either one or both were elevated. they said it was probably stress.

So an NRI probably would be a bad idea for you to try And Yohimbe as well.

 

[out2lunch]

jjgirl... so sorry to hear about your problems with KP. I'm in SF and was able to leave KP last year when my Medicare from SSDI finally kicked in. They were positively worthless for everything that has ever ailed me. The only diagnosis they got right during the 20 years I was with them was my fibromyalgia. But the ME/CFS, Hashimoto's, complex sleep apnea, Lyme, POTS, and EDS were all diagnosed by experts outside of Kaiser. (I was fortunate over the years to have a partner with a good salary so we could afford to pay doctors outside KP.)

If you can afford to do so, I would highly recommend you see Dr. Jaradeh at Stanford. He is the director of the Autonomic Disorders Clinic and very knowledgable about the stuff you're describing. I saw him last year when I developed peripheral neuropathy and extremity weakness a few weeks after a very bad GI illness. KP couldn't identify the gut bug even with multiple cultures, nor could the neurologists figure out why I had this widespread painful neuropathy without having diabetes.

Well, Dr. Jaradeh did a boat load of autonomic testing and figured it out in no time. The peripheral neuropathy was autonomic caused by a mild case of Guillain-Barre. It's not uncommon for GBS to move in a few weeks after a camphylobacter infection, which is what Dr. Jaradeh suspected I had, given the symptoms. None of the brainiacs at KP could figure this out, and kept insisting that my very mild pre-diabetes was the cause of my problems. Of course, Dr. Jaradeh said give it some time and most of the neuropathy would eventually go away. He was correct; after about one year, 90% of the pain and tingling disappeared.

You definitely sound like a POTS person to me, and Dr. Jaradeh is a great diagnostician for this. Hopefully you can get to see him and nail all of this stuff down.