Periodic paralysis

Hello @pmross, Thank you for starting this discussion. I was going to share another link when I responded to your first post in another discussion but wasn't sure. You mentioned your daughter also has Hypokalemia and I was wondering if the periodic paralysis may be connected somehow. Here's the research I found earlier:
-- Hypokalemic Periodic Paralysis: https://www.ncbi.nlm.nih.gov/books/NBK559178/

Here are a couple of related discussions that might be helpful while you wait for others to respond:
-- Periodic Paralysis or Hypokalemic Periodic Paralysis: https://connect.mayoclinic.org/discussion/periodic-paralysis-or-hypokalemic-periodic-paralysis/
-- Chronic Fatigue Syndrome and Temporary Paralysis? https://connect.mayoclinic.org/discussion/chronic-fatigue-syndrome-and-temporary-paralysis/

I think @amber3212 may also have some experience to share. You mentioned the teaching hospital wanted to do a genetic test but insurance denied it. I think you can use an appeals process with the insurance company if the genetic testing is needed to confirm a diagnosis. Here's some information I found that may be helpful - https://www.counterforcehealth.org/post/the-ultimate-guide-to-overcoming-genetic-testing-insurance-denials-in-2025-proven-strategies-for-patients-and-families/.

@johnbishop, @pmross and all... Interesting. John, does this sound vaguely related to my paralysis issues? I dont want to get into the discussion if you have thoughts about it... similarities, you think? Or are we in a completely different territory here?

Blessings, Elizabeth

Hi Elizabeth @ess77, I'm just a patient like you but it may be a good question to discuss with your doctor if you have chronic fatigue syndrome and have paralysis symptoms.

@johnbishop Yes, John. I got all that .... just thought since you've read the messages about my paralysis since last year perhaps you could give me your take on it, but I got it.
I'm having a big, nasty, painful PMR and GCA flare the last 2 weeks, worsening, increased Prednisone I just got down some!!! So, think I'll focus on .e for a bit.
Be well, blessings on you!
Elizabeth

@ess77 - So sorry Elizabeth. The PMR and GCA can play havoc when you have other autoimmune conditions. Did the paralysis symptoms first start with a flare up with the PMR and GCA?

@pmross - Have you looked into appealing the denial by the insurance company for the genetic testing? It might be worth it if you can get a better diagnosis and possible treatment for your daughter.

@johnbishop and all... I don't know for sure. The PMR and GCA first raised their nasty heads 2 years ago after the 2nd Covid infection I had that fall, that was extremely severe. I was able to stay home, not hospital, by promising ER doc I'd stay on my Bi-pap and O2 on 3 L 24/7, to keep my O2 above 90, the required level to avoid hospital admission with Covid. I refused to be admitted!!!! It was a tough week on the Bi-pap, alone, so ill... got 3 IV Remvisidere infusions after positive test.

The day after began to feel better, I had enormous hips and shoulder pain. Never had before. Couldn't turn over in bed, barely move. It was scary and rough. It was my 1st PMR and GCA. Put on Prednisone then added Methotrexate for GCA with Prednisone for PMR. Calmed things finally, but never the same after that. My muscles. Mobility worsened. Fatigue worsened! Yuck.

Mayo 2025, ER for coma level glucose, steroid induced diabetes, serious 4 days ER and then several days in step-down care to get under control, begin insulin, level everything else out as well. I was a mess...

In hospital rehab a week and day 3 legs, hips down, were paralyzed. Totally. for 4 days. No diagnosis. Mayo rheumatologist increased my Prednisone to 20mg on the chance it was PMR, although she wasn't sure and they think not now. Think it was caused perhaps by allergic reaction to Oxympic that was keeping diabetes controlled until I suddently had all the side effects and was bedridden, muscles not responding to nerves. Rehab NH from hell, learned to walk again, sort of, and if get over tired, over-do PT or exercise, or anything, can't use my legs. It now affects the whole body. All my muscles go bonkers.

I began have shoulder, neck, scapula pain, both sides!. 2 weeks ago, getting worse daily. Then, hips began the same, and pelvic area lower back. Harder daily to use my legs. Lots of pain. Doc increased Prednisone from 14mg taper hold for last4 months, to 16mg daily 2 days ago. Helping reduce pain some, but not enough. Kept me up all night last night. Today, I'm losing the muscles in my whole body... legs are not moving well, arms can't do much and are jerking from the shoulders, in the upper arms, hands don't want to work. typing is hard. Hands haven't worked well for several days, getting worse.

Sight is very bad now, blurred and foggy. I may be losing my sight with GCA! Actually, as I'm chatting, I'm getting worse. I'll call doc now and see what to do.

Thanks for being you, John. Blessings, Elizabeth

@johnbishop

She also has Lyme disease the teaching hospital said she has 4 of 5 markers. To me that seems the base of everything but I’m not a doctor just a mom in hopes to get answers or a cure♥️

@pmross - I'm not a doctor but I think you may be onto something. From what I've read Lyme disease can cause a condition called Transverse Myelitis - https://newsnetwork.mayoclinic.org/discussion/transverse-myelitis-know-the-signs-and-symptoms/. Here's more information on Lyme disease from Mayo Clinic - https://www.mayoclinic.org/diseases-conditions/lyme-disease/symptoms-causes/syc-20374651.

@cmmichaela may has posted about Lyme disease and paralysis in other discussions and may have some thoughts or information to share with you.

Is the teaching hospital still trying work with you on diagnosing your daughter to figure out a treatment?