I'm a human puzzle looking for answers

@seniormed Yes. The various dysautonomias can cause symptoms that go well beyond what we think of as strictly neurological. Skin issues, sleep issues, GI problems, the list goes on. To fedupintexas, be prepared to talk about the whole cluster of problems you've been having, and not just the skin issues.

Have you had your liver checked? I found out after years of not getting answers, that I have AIH. Big time weight gain, itching skin and discoloration. Hair was falling out and I hurt everywhere. I’m now on immunosuppressants and it’s under control, but not before I ended up with cir

I'm so sorry you are experiencing all of this. Sending you prayers and best wishes. I hope you find answers soon.

@fedupintexas you’ve certainly been given quite a few suggestions! Have you seen any doctors at a comprehensive medical center? The doctors are usually ‘a cut above’ your local doctors. You just call and ask if you can see a rheumatologist. It may be a drive but well worth your time. Or maybe a university hospital. The doctors there are some of the best because they teach the new doctors. When I first got sick, none of the doctors knew what I had . My husband just called the university hospital about 1 hour’s drive away. They gave me an appointment 3 weeks away. I was going to be in rehab for 3-4 weeks so my husband just picked me up and off we went. The doctors that were there knew exactly what I had and were able to tell the local doctors how to treat my disease. I still drive to Denver every 2 months to see the doctors there. My husband drives me every time because he was so shook up seeing me before treatment. It’s all been worth it.
Call one of these hospitals tomorrow! You’ve been sick long enough! And I’d love to know how you are doing!

I just wanted to update y'all..so I showed up to my neurologist appt last week only to be told that the Dr had cancelled my appt because I had previously rescheduled twice. Mind you our truck had been broke down for over a year and on both occasions it was out of my control that I had to reschedule. I gave 24hrs notice and didn't even cancel but REscheduled both times. I never got a phone call, text, email, nothing saying she was refusing to see me. So my husband takes off work early, I get all the way up there (I live an hour away mind you), with typed out notes in hand ready to lay it all out...and she refused to see me. I was in tears! So my PCP is working on a new referral for a different neurologist. In the mean time, I'm having some new very concerning symptoms that I'm pretty freaked out about. For a while now I've complained about muscle weakness, loss of strength, a "restless leg" sensation but in my upper torso area (it's like bugs are tickling my bones and I have to jerk & twitch around it's horrible!) it would only happen on occasion always in the late evening/night time but would last for hours & keep me up all night! Now they are happening daily. I have very obvious muscle atrophy on my left side from my face, to my arm, leg, back side and my foot is flatter, my arch is almost completely gone. My knee on that side feels like it's bending the wrong way. My sweat glands seem to be overactive. I'll be sweating excessively, skin feels like it's on fire then in just minutes I'll feel my body cool down and I'll have cold chills. My hair goes from dry to overly oily like I'm a teenager again, then be normal. Everyday is a guessing game on what is my body gonna do today! Today I noticed my right side is losing muscle tone too. My mouth will get super dry, hard to swallow. Also, for the last 2 days I have had zero appetite, I had to force myself to eat some crackers earlier and they tasted like bland cardboard. My sense of taste is like gone! This is all happening very rapidly! I have an appt with my PCP this Thursday and it can't get here soon enough. If anyone has any insight they can share, I'm all ears. Neuro muscular disorders scare the hell out of me!