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

[jjgirl67]

Hi all-- I'm still as of yet undiagnosed. Have been entirely frustrated w/ medical professionals as have been told I just have anxiety or that my complaints are "somatic". Problems are getting bigger though and feeling pretty desperate.

I have hypermobility, which was unfortunately handed down to my son. I suspect I have EDS but Dr.'s were not interested in pursuing saying gene testing is expensive and will not change the outcome. I have intolerance to standing, my pulse gets up there, I overheat and feel absolutely miserable. I have not actually fainted but have come very close. I've been known to abandon many shopping carts in stores as I just couldn't hold out any longer. I'm always hunkered over my cart for support and I have to bring along a cold drink and ice packs everywhere.

In addition, now dealing w/ elevated neuroendocrine tumor markers but Dr. feels we have ruled out pheo. I made a short video showing the elevation when I stand up as when I have asked about POTS, I've been looked at like I have 3 heads. Every time I go in for an appt. my heart rate is through the roof and my hands are shaky so they think I have anxiety....that's not the problem though it's because I've just been upright.

Usually by the end of the appt. my HR and shaking have normalized...after I've been sitting or lying down on the exam table. still they say it's anxiety. I asked for a tilt table test 3 years ago but they said they don't have a table.

They also do not have a neuroendocrinologist so my endocrinologist has been conversing with one back on the east coast via email. Low and behold, he suggested autonomic dysfunction. I was like ,,,"hello...haven't I been asking about that for years???" anyway--they still have not done anything to further investigate that possibility and instead working to complete gastro eval as began having unbearable upper abdominal pain 1+ years ago.

Anyway, I shouldn't go on and on as perhaps, this isn't what I have suspected and I don't want to waste everyone's time but I would like to ask if anyone is willing, to please take a look at my video and let me know if this is similar to what you go through. It's short as I didn't last for long and these days, I can hardly work and feel like my heart is just going to give out, it's working so hard. The only way I can get my hr under 100 is by laying all the way down--just sitting it will stay around 105. I will greatly appreciate any morsels of wisdom or advice.

• My heart races when I stand up! Anyone know what this might be?
  www.youtube.com
  Can anyone help me? My heart beats so fast when I'm standing, I overheat,feel winded, get shaky, sometimes dizzy. It's exhausting! In this video my heart rat...

 

[zzz]

I watched your video. Those are classic symptoms of POTS. From the Postural Orthostatic Tachycardia Syndrome Summary on the Dysautonomia International Web site:

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia. POTS is a subset of orthostatic intolerance that is associated with the presence of excessive tachycardia on standing.1 The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing.1,2,3,4

It would probably be useful to read the whole article.

still they say it's anxiety.

That's what they say when they don't know what's going on. Don't waste any more time with those people.

It sounds like you need different doctors than your current ones; you can spend your whole life and not get anywhere if you have the wrong doctors. Someone like an autonomic cardiologist (not just a regular cardiologist) should be able to help you.

Your elevated neuroendocrine tumor markers sound like something different, but they could possibly be related. If you start with a good autonomic cardiologist and go from there, you should get some results. If you're not in a big city, you may have to travel. (Is that possible for you?) Just be sure ahead of time that you will be seeing someone who has expertise in POTS. Good luck!

And welcome to Phoenix Rising!

 

[Gingergrrl]

@jjgirl67 I watched your video too and it looks like POTS to me unless the episodes have also occurred in other positions (not standing up) and then it could be inappropriate sinus tachycardia (IST.) Either way, it is an autonomic problem.

Where do you live? On the off chance you are in So. CA, I can refer you to a great autonomic cardio. I know it is a long shot! He is not an ME/CFS doctor but he was able to help me with some similar issues to yours.

Best wishes and welcome to PR.

 

[Martial]

You should definitely be seeing a specialist that has experience treating this kind of condition, do not worry about the other doctors its just out of their scope of expertise. It is INDEED not somatized, I am sorry to hear about your struggles and am wishing you the best!

 

[Valentijn]

@jjgirl67 - I notice that your oxygen initially dropped a bit when you stood up. Still in the "normal" range, but mine also drops when standing during bad periods, and my heart rate rises to compensate. My HR doesn't get as high as yours, and drops again once my oxygen gets back up to 98-99. And then my oxygen drops again once my heart rate drops a bit, so I basically go around in circles for hours: oxygen drops, heart rate rises, oxygen rises, heart rate drops, oxygen drops, heart rate rises, etc.

Anyhow, I think your heart rate is also responding to an oxygen drop. Can you test your blood pressure when you stand up? The drop in oxygen might be due to blood pressure falling and/or pulse pressure falling. "Pulse pressure" is the difference between the systolic and diastolic values, and basically indicates how much blood is pumped with each heart beat.

 

[WillowJ]

it's no wonder you are frustrated. It does sound like you are being neglected.

You need better doctors. I know that's crazy because it's hard to find. Change as many times as you have to until you find someone who takes you seriously. I hope you are in a big enough town to make this possible.

Maybe send your out of town endocrinologist all your labs. They might be willing to take on the role of a primary care doctor and have a little chat with your other docs about why certain things are not getting followed up on, or what other specialties should see you in addition to them and GI.

Of course Kaiser is resistant to everything that originates outside of the system, so if this is not a Kaiser doc or official Kaiser subcontractor this may be a little difficult.

You seem to have a number of things going on, and I am concerned that some more of them may be getting ignored, just like the dysautonomia has been.

I hope it works out..

 

[Gingergrrl]

Of course Kaiser is resistant to everything that originates outside of the system, so if this is not a Kaiser doc or official Kaiser subcontractor this may be a little difficult.

I didn't catch the part about Kaiser and that makes the situation more tricky. I don't know if you can afford it, but in this case, it would be worth it to see a private cardiologist outside of Kaiser who can give you an objective second opinion. Ideally you want a cardio who is very familiar with autonomic issues. Best wishes.

 

[jjgirl67]

Thank you all so very much for your responses--makes me feel a TON better just having others that understand!!!!
Yes-Kaiser is very difficult to deal with. Have met some great Dr.'s but many seem so limited in their scope and others are downright rude. In 2011, I had a period of about 6 mos of severe muscle cramps, weakness and some crazy neuropathic symptoms. The neuro did all kinds of tests and everything was essentially normal EXCEPT I had iron deficient anemia. He proceeded to treat me with IVIG as his "hunch" was that I had CIDP...(an inflammatory neuropathy) It didn't help. I had already sent him a copy of a study done with adolescents who had similar symptoms and anemia--once they were treated their symptoms stopped....well he wouldn't have it, said "that was done with children so doesn't apply to you." For 6 months I thought my life as I knew it was over...I was making arrangements for my son's care. I became so weak that one day I opened the trunk of my car and didn't have the strength to close it...taking just a few steps left me breathless and my heart pounding. Well, I finally got a 2nd opinion and the neuro felt my muscles and nerves were suffering from hypoxia and soon after treated my anemia with iron transfusions. The turn around was nothing short of a miracle. My ferritin continues to fall and will soon need infusions again, which is scary since iron can promote cancer and I have elevated tumor markers. But I've read there is a link between POTS and iron deficiency which is interesting.

I have had a lot of dizziness upon standing for a long time and the heart racing has been getting worse. I don't have a BP monitor but maybe i should buy one. Those symptoms do worsen with low iron status and hot weather. My poor son gets so aggravated that I can't do a lot of stuff he wants to do...like shop, play basketball etc. But also have CRPS in my forearm due to a phlebotomist using my median nerve like a dart board. The CRPS has worsened the overall picture quite a bit.

I'm about to have a capsule endoscopy and 6th CT scan. This time a tri phase scan as the gastro spoke to the radiologist who felt the endo ordered the wrong types of scans to look for neuroendocrine tumors. There's that whole outside specialist problem--they don't have a neuroendocrinologist so the regular endo has been put in the position of having to stretch beyond her expertise. She reached out to an outside specialist which took 4 months. Interestingly, he did suggest autonomic neuropathy as possibility but they have not done anything further int hat regard, in spite of my asking. Have mentioned POTS many times and none of them were ever interested. one DR. just last week attempted to request outside referral to UCSF--but they denied it.

Anyway--I'm so grateful I found this board--have felt so alone with this and Kaiser has really made me loose confidence, not just in them but at times in myself too but I feel stronger than ever now. I'm glad I made the video as I showed it to a couple of the docs there. One immediately identified with the issue and the potentials at play--another made fun of me for posting on youtube....but I feel no shame in doing so. I haven't been getting the help I need and I think Dr. "Somatic " deserves some shaming!

 

[jjgirl67]

@jjgirl67 I watched your video too and it looks like POTS to me unless the episodes have also occurred in other positions (not standing up) and then it could be inappropriate sinus tachycardia (IST.) Either way, it is an autonomic problem.

Where do you live? On the off chance you are in So. CA, I can refer you to a great autonomic cardio. I know it is a long shot! He is not an ME/CFS doctor but he was able to help me with some similar issues to yours.

Best wishes and welcome to PR.

Thank you so much. I'm in the San Francisco bay area. Sometimes my heart does race after meals but there is most always an decent increase upon standing. Cooler weather is helpful though. Maybe a move to Montana is in my future!

 

[jjgirl67]

You should definitely be seeing a specialist that has experience treating this kind of condition, do not worry about the other doctors its just out of their scope of expertise. It is INDEED not somatized, I am sorry to hear about your struggles and am wishing you the best!

Thank you so much. I hope we finally get to the bottom of all this!

 

[jjgirl67]

I didn't catch the part about Kaiser and that makes the situation more tricky. I don't know if you can afford it, but in this case, it would be worth it to see a private cardiologist outside of Kaiser who can give you an objective second opinion. Ideally you want a cardio who is very familiar with autonomic issues. Best wishes.

Can't really afford it right now,...have lost too much ground/income with work but hopefully in the near future.

 

[jjgirl67]

it's no wonder you are frustrated. It does sound like you are being neglected.

You need better doctors. I know that's crazy because it's hard to find. Change as many times as you have to until you find someone who takes you seriously. I hope you are in a big enough town to make this possible.

Maybe send your out of town endocrinologist all your labs. They might be willing to take on the role of a primary care doctor and have a little chat with your other docs about why certain things are not getting followed up on, or what other specialties should see you in addition to them and GI.

Of course Kaiser is resistant to everything that originates outside of the system, so if this is not a Kaiser doc or official Kaiser subcontractor this may be a little difficult.

You seem to have a number of things going on, and I am concerned that some more of them may be getting ignored, just like the dysautonomia has been.

It is getting harder and harder to find good Dr.'s. I hear a lot of horror stories, not only at Kaiser-- though they seem to have more than usual, probably much due to their cookie cutter model. I hear some people say they love it there but they are usually the ones who are healthy and or have clear diagnosis. The out of town neuroendocrinologist isn't anyone I know--he's someone the KP endo knows and has corresponded via email with. I'm sure she's shared my recent labs but how much can he really know if it's only been via email? I would prefer to see a neuroendocrinologist in person but they don't have one and a request to see one at UCSF, made by a Kaiser Dr., was denied. She tried really hard too. Disappointing! I sure hope I don't have cancer because that would mean they have pissed away the last 8 mos. waiting for the neuro to respond, ordering the wrong types of scans etc. one delay after the next....

I hope it works out..

 

[Gingergrrl]

I want to respond to your post in more detail and will tomorrow but if you are in SF area, you should consider going to OMI (Open Medicine Institute) to get tested and assessed for everything going on. It would not be covered by Kaiser so may be cost prohibitive but wanted to mention anyway.

If you were in LA, I know a great autonomic cardio but maybe there is someone at UCSF or Stanford? Do not give up on your search and it took me two years to find the team of doctors that I now have.

 

[jjgirl67]

@jjgirl67 - I notice that your oxygen initially dropped a bit when you stood up. Still in the "normal" range, but mine also drops when standing during bad periods, and my heart rate rises to compensate. My HR doesn't get as high as yours, and drops again once my oxygen gets back up to 98-99. And then my oxygen drops again once my heart rate drops a bit, so I basically go around in circles for hours: oxygen drops, heart rate rises, oxygen rises, heart rate drops, oxygen drops, heart rate rises, etc.

Anyhow, I think your heart rate is also responding to an oxygen drop. Can you test your blood pressure when you stand up? The drop in oxygen might be due to blood pressure falling and/or pulse pressure falling. "Pulse pressure" is the difference between the systolic and diastolic values, and basically indicates how much blood is pumped with each heart beat.

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?

 

[jjgirl67]

I want to respond to your post in more detail and will tomorrow but if you are in SF area, you should consider going to OMI (Open Medicine Institute) to get tested and assessed for everything going on. It would not be covered by Kaiser so may be cost prohibitive but wanted to mention anyway.

If you were in LA, I know a great autonomic cardio but maybe there is someone at UCSF or Stanford? Do not give up on your search and it took me two years to find the team of doctors that I now have.

Thanks--money is tight as I've missed so much work lately but I may be able to change insurance providers next year. I can only get one of the new health reform plans though due to pre- existing conditions and not many Dr.'s where I live accept it. I've heard the gov keeps cutting their payments so more and more are dropping out or not signing up---so much for that.

 

[Gingergrrl]

I want Valentijn to answer this too but in my case, I didn't know my BP dropped or was consistently so low until recently. I am now taking Midodrine which is really helping.

I have no idea if this would be right for you but if you could get a proper assessment and tilt table test, they could measure your BP. I would also buy a BP cuff to measure and track at home to show your doctors just like you did with your heart rate.

 

[Gingergrrl]

Our posts keep crossing but as far as the Obama Care plans through Covered CA, they cannot ask or exclude you for a pre-existing condition. My family & I just got one as of Oct 1st and did not have to tell them anything about pre existing conditions. I believe that is a key part of the new law unless I am wrong?

 

[jjgirl67]

Our posts keep crossing but as far as the Obama Care plans through Covered CA, they cannot ask or exclude you for a pre-existing condition. My family & I just got one as of Oct 1st and did not have to tell them anything about pre existing conditions. I believe that is a key part of the new law unless I am wrong?

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.

 

[Martial]

Thank you so much. I hope we finally get to the bottom of all this!

By the way out of curiousity, have you been sick/had symptoms your whole life or was this all a pretty recent change to your overall health?

 

[jjgirl67]

By the way out of curiousity, have you been sick/had symptoms your whole life or was this all a pretty recent change to your overall health?[/quote]
I have had some symptoms my whole life like fatigue and long recovery time from exercise, balance issues. I was a dancer/contortionist in NYC--I remember feeling so exhausted after a show and always wondered why. I gave it up due to growing balance problems, mostly on recovery from being upside down... Had early onset of arthritis late 20's. Lots of joint problems, hip displasia, dislocations etc. I think being hypermobile makes it harder to do stuff in general. My son has it too, even worse. He's only 12 and has fatigue/heat intolerance but no pots type symptoms.

There was a marked change/worsening of symptoms in Feb this yr when suddenly I developed swelling in my hands feet. They started turning bright red and the veins on my feet looked like they were going to burst. My face, chest, neck flushing started around 2010 but back in Feb started occurring much more frequently. It was in 3/13 I began having horrific upper abdominal pain, feels much like a high pressure, gas like pain but magnified x 1000--it makes me break out in a cold sweat it's so bad. every time it starts up I feel like something is just going to burst. one dr. mentioned possible esophogeal spasms as it does come on in waves but have not been tested for that. It's worse when I bend over so I have to keep my back arched and usually put my hands over my head--it's a wild ride. when it's really bad, if i just lightly touch the skin on my abdomen, it causes a ripple effect of intense pain so one thought was possibly my crps is spreading but don't know. i may get a ketamine infusion soon, have been afraid to try but now thinking it would be interesting to see if some of these other symptoms might calm down.