More Proof To My Push For The Full Diagnosis

[erikainorlando]

OK...remember I am the one that is now just pushing and pushing for everyone to find out the cause of their dysautonomia if there is one. I think we get blown off quite a bit and we are usually just so happy to have some diagnosis even if it (dysautonomia) is a symptom of a bigger underlying cause that we figure we have to just deal. Personally, I am scheduling more plasmaphersis and I am thinking I may even one day return to work! Just happy to not feel likeI am dying all the time.

Anyway, so I watch an old episode of Mystery Diagnosis last nite. The poor girl keeps fainting. After being blown off, the finally do a TTT which shows neuroly-mediated syncope (spelling sorry)...so they start to treat her. But she keeps being unable to function. Has to quit college, can't stay awake. Weak, can't stand,constant desire to sleep. So even her parents become convinced she is depressed (which she probably is at this point but that is not the problem)...more and more antidepressants are prescribed. They don't help. Finally, she is almost in a coma....has urinated on herself and they bring her back to the hospital (4 years have passed). She, on standing, has no BP. Finally, they figure out she has an endocrine problem. No cortisol.....so they give her the correct meds for the hormaone deficincy and she gets her life back.

4 years!! It wasn't just syncope and depression!

Wow..........even the specialists in autonomic dysfunction miss this stuff as they are looking for ANS dysfunction.

Sorry- I am on a roll here as many times we don't have to live this way...sometimes it is "just" dysautonomia...but make sure!

Love to all. Erika

[sue1234]

Thanks Erika for pushing! I so get what you are saying. In fact, I don't even think "dysautonomia" itself is the problem most of the time--it is just ANOTHER symptom! It's like having a fever. The fever is not the problem, it's what's causing the fever. If the doctors would just keep peeling the layers back, they might find the root cause. And the root cause may be something that can be fixed or helped.

But, I just can't seem to find the doctor that wants to peel the layers back. It is way too easy to label dysautonomia and throw meds at it than look for WHY.

[Sarah4444]

I totally agree, and after 25 years of what I now know is dysautonomia I realize that if I want answers I will have to push for them myself. It is so hard, lonely and frustrating trying to figure it out on your own when you are so sick, but without a doctor to help root out underlying causes, what other choice do you have?

[sue1234]

Oh Sarah, and I've only been at it for 5 years! You're 20 years further into it than me! It is very hard to do all the thinking and researching for ourselves when we are not physically or mentally up to it. I keep going over what issues I had BEFORE the POTS hit me. The only thing is a 15-year history of low blood sugar, that is worse now than it has ever been. I've even lost weight hoping it would stabilize my sugar, but it hasn't helped.

[sugartwin]

Erika, I totally agree with you. When I was diagnosed with POTS, they tossed some Florinef at me and discharged me with a follow up for SIX MONTHS later. As a result I was in the hospital once a month, every single month for five months straight. Even with insurance, I was bankrupted. No one ever tried to get to the root problem, or even adjusted my medication. Every month I was essentially waiting to get sick enough to go back to the hospital. I was miserable.

Then in December, I was finally diagnosed with endometriosis, then EDS, then finally small fiber neuropathy. It took finding doctors who were willing to sort through my symptoms rather than slapping everything with the POTS label.