My Autoimmune Disease is Getting on My Nerves… Literally

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I had a nerve conduction test with my new neurologist yesterday. The test was to see if the numbness, burning, and tingling in my hands is because of carpal tunnel. I was referred by my old rheumatologist.

I liked Dr. Z instantly. She is straight to the point, but really nice. Mike’s been seeing her, so I was already familiar with her and right at ease. Still, I was a bit nervous. Since my old rheumatologist referred me back in April, my symptoms have progressed.

  • the tip of my right index finger has a constant burning sensation
  • the area beneath my thumb on my left palm goes into spasms
  • my feet now get burning and tingling sensations

I had a feeling I wasn’t dealing with carpal tunnel.

During the test, Dr. Z and I chatted about my symptoms, my autoimmune disease, and which doctors I’ve seen. Even though she can seem brisk because she gets right down to things, I found her very warm and personable.

When the test was over, she explained how it worked. Basically, the computer measures how long it takes the electric stimulation to get from Point A to Point B. She showed me the normal ranges and where mine are: normal.

The good news is, she said I don’t have carpal tunnel.

The bad news is, she said it’s likely my autoimmune disease attacking my nerves.

In further good news, Dr. Z said there’s no nerve damage yet. She only tested my hands, and told me that if I’m still having the sensations in my feet in four weeks, to come back. (Since it’s a new symptom, she prefers to wait another month before testing.)

Next week I see my new rheumatologist. I really hope she can put these puzzle pieces together; neither bladder inflammation nor nervous system problems are really a UCTD thing. They’re more of a Lupus thing, and since Dr. S had said my UCTD could be pre-Lupus, I’m a little concerned.

Now that my joint pain is under control and I’m not bedridden or dependent on Mike to help me get dressed, I’d really like to address these other symptoms. I just hope that my new rheumatologist is willing to figure this out with me.

A Sudden Goodbye

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Yesterday my father-in-law told Mike that he got a letter saying that our rheumatologist was leaving the practice. I didn’t want it to be true, but I didn’t think my FIL was mistaken. So I called Dr. S’s office.

It’s true.

They couldn’t give me any information. The receptionist I spoke to said she honestly didn’t know. All the staff had been told was that it was personal. It was sudden. I asked about my appointment later this month, and she told me he was already gone.

I’ll be seeing one of the other rheumatologists that day instead.

I’m crushed.

I don’t know how to feel or what to expect from Dr. C. I don’t know if she’ll stick to Dr. S’s treatment plan. If she’ll change my diagnosis. If she’ll even take me seriously. Every time I see a new doctor, I have to start from zero. I have to convince them that, even though my labs are vague, I am legitimately sick.

Every single time.

This couldn’t come at a worse time. I’m dealing with new symptoms, that I thought were carpal tunnel but are now affecting my feet as well as my hands and wrists. There’s a chance that it could be my UCTD developing into Lupus. I need my rheumatologist, who has taken me seriously and worked very closely with me. Not a doctor I’m being shuffled off onto, who now has an even heavier load of patients.

I want to be optimistic. I really do. But it’s hard.

Summer Flare Makes Me Feel Fine

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I’ve been flaring for just about two weeks now. Yesterday was particularly bad. I ended up calling it a day early and resting on the couch.

I think it has to do with the weather; the temps here have been in the low 70s, getting pretty chilly some nights. It’s been pretty miserable. After so many days of pain, I become convinced that I’ve never had pain-free days and never will again. Pain is smothering like that.

via GIPHY

Still, a few good things happened yesterday:

  • The healthcare bill vote has been delayed because the GOP didn’t have enough support. It’s not dead and bloated, but we blocked that son of a bitch. And we’ll keep blocking it.
  • I crossed 20,000 words for my WIP.
  • I got some potentially good news about a family member.

That’s how I’ve been getting through this flare. Focusing on the good. That and Advil twice a day, Tramadol at night. I haven’t really been sleeping, either, but last night I finally slept decently. Sheer exhaustion? Maybe. But I’d like to think that since my mind was eased a bit, I could burrow through the pain and rest.

I hate summer flares. They don’t happen often. My last was a couple years ago. I really didn’t expect one this summer, since Plaquenil has been working so well for me. Hopefully it’s just a weather thing—maybe we’ll just need to adjust my meds. I see my primary this week and my rheumatologist at the end of the month, so we’ll see.