RARE disease caused permanent damage d/t dismissed by Drs for 7 yrs

skyfaye02,
YOU ARE OBVIOUSLY A VERY STRONG SMART PERSON ‼️‼️‼️‼️‼️ ‼️. YOU should add "Super Human " on your name badge
Your patients are SO SO VERY PRIVILEGED to have you as their nurse.
You have every right to be ANGRIER THAN ANGRY at the idiotic doctors. They broke their oath of "first due no harm ". I have been dismissed by way too many doctors, for so many problems, some that even a first grader would have been able to connect the dots, other problems that are just so strange, odd, confusing, that I have to remind myself that what I feel is really real.
Example, I just had parathyroid surgery. It has been a player in my health for at least 17 years, skipping forward, I got 5 separate opinions 3 endocrinologists, 2 PCPs. 2 endocrinologists said I needed the surgery, the other endocrinologist and both PCPs said " the best approach is to wait and see." I traveled to another state to get the surgery done by an endocrinologist specialist surgeon, all she does is work solely with the PTH glands and the problems they can cause.
Did you finally find a good doctor to work with? How were you diagnosed? What treatments have helped you, with which problems?
You mentioned some of the permanent effects, one being your reproductive system. If you mean that you can not have children, and you wanted biological children, I am so extremely sorry for you.
Be proud of YOURSELF and all that YOU HAVE ACCOMPLISHED FOR YOUR OWN HEALTH.
I guess it's against the law for all of us who have been dismissed by doctors, to form a Torture Squad, then let our anger be directed at the idiots.
Thanx for sharing your story, no scratch that...thanx for sharing your horrifically long suffering experiences with us....You give others to fight for their own health and maybe we might even see the light at the end of our darkest tunnels, before we see THE FINAL BRIGHT LIGHT 🌟🌟ShelleyW

@skyfaye02 Welcome to Mayo Clinic Connect! I’m sorry that you had such a difficult time getting diagnosed. That’s pretty much the story with most all autoimmune patients. But, being brushed off by the doctors, that’s terrible. The same happened to me, but I have a great doctor now. And you Have survived, so now you can look forward and maybe help your patients when they get frustrated by our medical system.
Did you train in any speciality as a nurse?

I went through RN school doctors are not perfect. One doctor pumped me full of Demerol for a migraine with fever. My husband waited until shift change took me back. I don’t remember due to loosing consciousness. The doctor took one look at me said I had bacterial spinal meningitis come to find count it was mrsa and my spinal count above 2800. The doctor told my husband I could have died left with seizures and migraines plus neurological damage. 2nd incidence involved gallbladder removal nicked the phernic nerve collapsed my lung. 3rd problem doctor said he specialized in AVN (avascular necrosis) and osteoporosis. The doctor screwed up my hip major. In lesss than 6 months hip loosened. Found a doctor that did specialize in it removed AVN and osteoporosis used cadaver bone replaced hip. Less than 2 days later nurse put me on the bedpan wrong dislocated new hip and fractured actebulum. I was sedated for a week given blood because of blood loss. I had plates screws and a new hip put in. Now 4 left hip replacements and fx later finding out sciatic and perineal nerve were both damaged plus the SI joint and the ischium bone you sit on is also screwed up because of the fracture. My orthopedic surgeon told me today that I will permanently be confined to a wheelchair in another year or two. I am glad you finally received a diagnosis sorry that there’s not much research into it. I understand your frustration being diagnosed with something but no research into it.
I have since 2002 when I got mrsa bacterial spinal meningitis couple of neurological side effects severe autoimmune axonal sensorimotor dysautonomia peripheral poly neuropathy, small fiber neuropathy and CAN- cardiac autonomic neuropathy. The cardiologist and electrophsiologist gave me 8 years to live 4 are gone because of the bradycardia/ tachycardia and problems with blood pressure.
I am glad you finally have an answer.
The doctors can’t figure out why all my autoimmune markers are high but I test negative for everything. I have a strong family hx of RA and the lupus rash but no positive. My closest positive is 13 for RA but you have to be 14 to be positive. The medical field is really difficult and don’t want to listen to you. It almost makes you feel like you are crazy. Have you tried researching what you have and IVIG therapy to bring up your immune system? I was on IVIG from 10-18 for immune problems. Ask the doctors about it. It’s very hard to get on to it. It helps build up your immune system.
I left the nursing field because I felt like doctors have a God complex and don’t listen.
I admire you for keep working in it.

Artemis, you have such strength to have been through all that, yet are helping people here. You mentioned something that I think I have (not diagnosed yet). The cardiac autonomic problem. I just had a holter monitor with pulse rate 41-110, SVT ( supraventricular tachycardia) and my BP is so labile I have to take it several times a day before I take my BP meds, so I don’t if its too low. I see my cardiologist soon and will ask about that. Many other signs of autonomic dysfunction so why not my heart? We help each other here, and indirectly get to a diagnosis by our own research and suggestions to our doctors. Thank you for your giving efforts and time to help others here! You may have provided my 7th autoimmune diagnosis! Is that emogi a smiley face or frown? Ha!

Thank you so much for those kind words. My support system is seriously lacking and I had been feeling like such an imposter

Some of the things I noticed after just developing the autonomic tachycardia last year, are that being in any heat immediately makes me feel faint with an increase in HR, also interestingly holding arms above my head makes it worse. When I have an infection or flare up I believe it is exacerbated as well.

We are so short staffed. My worst hospital admission actually took place on the medical floor I did clinicals on, it included a nurse slamming IV benadryl, immediately infiltrated the site. They just ace wrapped it, and in my state, I trusted that they would be checking my IV at least around once a shift, right?
WRONG, woke up groggy about 36 hrs later and saw my entire arm was red and ballooned. Unwrapped it myself to see my entire arm was red and swollen to about 2x the size of the other one, and ulcers had already started opening up and leaking. Vein was tracked red all the way past my shoulder, and when I d/c the muscles in that arm were locked and I couldn't straighted or relax it for 2 days.

Skyfaye, there’s interesting information and explanations about tachycardia brought on by raising your arms on the Dysautonomia Information Network (DINET.org). They describe how people will actually pass out in shower while washing their hair because their arms are above their heads. It’s common in POTS ( postural orthostatic tachycardia syndrome) where BP drops and heart rate increases to compensate. You might find this interesting. All part of autonomic dysfunction/neuropathy.

My husband suffered with dysautonomia after a blood infection last year, and I believe it has done more damage to his daily living than first suspected. I’m not sure there is no cure for this except time and patience (on my part!), he has never really lost the weakness and shakiness that is brought on my the autonomic problem.

skyfaye02,
The last part of your post...imposter, is terrifyingly true. Not only must you fight for diagnosis and treatment....all along the way you are dismissed by doctors, friends, colleagues, relatives. 🍒 on top, that pushes you into not trusting yourself to know your own body. YOU ARE NOT A N IMPOSTER. ShelleyW