No POTS? Clean EMG. Now what?

[zerohours000]

2 minutes ago, KiminOrlando said:

I got them on my chest, arms and abdomen. They did go away after about a week and a half. My Rheumatologist  (the 2nd one) said it was likely a lupus rash. The first one told me I had developed a sudden allergy to the soaps and shampoos that I had been using for 10 years. He also told me I didn't have an autoimmune disease. My PCP ran the ANA. Well, my new PCP. I called my actual PCP the day it happened and they told me it was just the flu and they didn't have time to see me. Got my new PCP the next day. 

The road to help is rarely smooth.

I see.  Well.  I have a rheumatologist appointment in exactly 2 weeks.  I'm scheduling an end-around my PCP.  I can just log-in to my patient portal and schedule an appointment with another doctor for lab work.   So that's what I'm going to do.  Mine were on my hands and feet.  They originally thought it was hand, foot and mouth.  Then they thought it was syphilis.  I think I vaguely recall getting some on my chest and abdomen.  These doctors are so influenced by other factors --- especially their own biases --- that it's a wonder anyone ever gets healthy in their care.  I broke down in his office because I told him my life has been ruined and devastated by this.  He still tried to get me to focus ONLY on the psychological component.  They don't seem to get it: I"m psychologically defeated and disturbed because a.) my unexplained symptoms and b.) my lack of care by so-called care professionals.  

Thanks for your feedback.  

Zer0 

[Pistol]

@KiminOrlando - is it possible to have auto-immune issues without an elevated ANA? I have generalized joint pains and low grade temps but ANA and RF and CRP are negative, yet WBC, RBC are low and ESR elevated. 

[Bluebonnet08]

Wow, that is a really rude reply by your doctor!  It's so frustrating to deal with that on top of an illness.  I think it would be a good idea to get a second opinion as well.  Have they checked for Sjorgen's Syndrome?

"PotsGirl" has a lot of information on her blog about Sjorgen's Syndrome and the testing for it.  From what I understand, the diagnosis can often be missed.

https://potsgrrl.blogspot.com/2011/09/what-is-sjogrens-syndrome-and-how-can.html

[zerohours000]

4 hours ago, Bluebonnet08 said:

Wow, that is a really rude reply by your doctor!  It's so frustrating to deal with that on top of an illness.  I think it would be a good idea to get a second opinion as well.  Have they checked for Sjorgen's Syndrome?

"PotsGirl" has a lot of information on her blog about Sjorgen's Syndrome and the testing for it.  From what I understand, the diagnosis can often be missed.

https://potsgrrl.blogspot.com/2011/09/what-is-sjogrens-syndrome-and-how-can.html

I have a rheumatologist appointment in 2 weeks.  My doctors thus far have said this is all in "the brain" and are leaving it up to my psychiatrists.  I can't understand why they won't even test me or consider my concerns.  They keep telling me my symptoms don't fit this or that disease.  I"m beside myself and at the point of giving up. 

[Guest KiminOrlando]

12 hours ago, Pistol said:

is it possible to have auto-immune issues without an elevated ANA?

I think the conventional answer is no, but I would never say there are absolutes in medicine. Elevated ESR can mean infection too. Low white count can also mean infection. Low red count can be anemia. If this is chronic, have they looked in to an infectious disease doctor? Strange stuff like bartonella or West Nile can do that, but if it is only barely out of range, they may not want to follow up. There are also bone marrow type stuff, I think, but that gets complicated. It is harder to get someone to track this stuff down without more to go on. If you have traveled outside of the US, they seem to get more interested because the possibilities get more exotic.

[Bluebonnet08]

I would just say, don't give up!  I've had this condition for 13 years and it was a long time before I got a proper diagnosis.  At first I was diagnosed with panic attacks, even though I literally collapsed on the floor of an emergency room!   What many of us need are problem solvers- someone who can put the pieces of everything together.  From my personal experience, I've found that many doctors are able or willing to do this, so it makes for a very frustrating time... 

I don't know if you are in the US, but an autonomic center is a good place to start.  There are many types of dyautonomia, not just POTS.  They will also look for things that frequently go with autonomic conditions like CFS, small fiber neuropathy, and many autoimmune conditions.  I had a good experience at Sentara in Norfolk, Va and I plan to go to Vanderbilt this fall.

Secondly, have you tried a functional medicine doctor?  I've had some help working with one.  Lastly, there is a site called "crowdmed" where people can submit "medical mysteries" and people work to try to solve your case.  I tried it last year.  It wasn't very helpful for me, but I spoke to someone that said it helped them.  It could be worth looking into.  

Good luck.. sometimes I feel like it's a long journey to try to sort out a complicated medical condition, but I think it's worth it to keep fighting for a proper diagnosis and root cause.  I am still looking for mine.  

[zerohours000]

All good suggestions.  I'll look into all of that right away.  I still have a few appointments coming up plus switching my neurologist.  I am in the US and there are autonomic centers in Boston.  So trying to get to those places.  I know I don't have POTS but something is truly amiss.  I have a history of depression and anxiety but I just know it's not that.  If those caused all these symptoms --- I would get down on my hands and knees and thank Zeus, because then I know it could be managed with some degree of ease.  But this seems more nebulous; the symptoms less easy to merely pin on the mental.  My doctors are total incompetents.  They're lazy, ignorant., and even when presented with new information re: dysautonomia, they shrug their shoulders and defer to their own pathetic (in)expertise.  The most frustrating part is them not listening to me, the patient, as if their degrees make them gods incapable of hearing the audible cries from their lowly subjects (us).  Thanks for the suggestions though.  

Best,

Zer0

[zerohours000]

On 6/15/2018 at 6:16 PM, Bluebonnet08 said:

I would just say, don't give up!  I've had this condition for 13 years and it was a long time before I got a proper diagnosis.  At first I was diagnosed with panic attacks, even though I literally collapsed on the floor of an emergency room!   What many of us need are problem solvers- someone who can put the pieces of everything together.  From my personal experience, I've found that many doctors are able or willing to do this, so it makes for a very frustrating time... 

I don't know if you are in the US, but an autonomic center is a good place to start.  There are many types of dyautonomia, not just POTS.  They will also look for things that frequently go with autonomic conditions like CFS, small fiber neuropathy, and many autoimmune conditions.  I had a good experience at Sentara in Norfolk, Va and I plan to go to Vanderbilt this fall.

Secondly, have you tried a functional medicine doctor?  I've had some help working with one.  Lastly, there is a site called "crowdmed" where people can submit "medical mysteries" and people work to try to solve your case.  I tried it last year.  It wasn't very helpful for me, but I spoke to someone that said it helped them.  It could be worth looking into.  

Good luck.. sometimes I feel like it's a long journey to try to sort out a complicated medical condition, but I think it's worth it to keep fighting for a proper diagnosis and root cause.  I am still looking for mine.  

@Bluebonnet08Do you ever get the burning sensations in weird spots?  Like ears, throat, or anus?  Sorry if that’s too personal a question.

Thanks