Luchadora No More-a or The Many Faces of Bilateral Bell’s Palsy

Once again, this post is largely for me. I know I am going to want to remember these events, and Bitey Dog serves as my journal. Read only if you need a sleep aid.

*******

Weeks ago I had a bump on my head that brought fever, joint pain, swelling and a bright red insanely itchy rash that eventually covered 13% of my body (but thankfully the redness has faded.). For every one of these symptoms it is recommended that you call your doctor. I tried. I tried for three weeks, but the office refused to give me an appointment. When I called and asked if there were any appointments available that day, they told me to go to a practice 15 miles away- maybe they would take me as a walk in. When I asked if I could schedule an appointment for the next day, I was told to “Call first thing in the morning, bright and early at 8:00 a.m. sharp, and maybe you can get an appointment for that day.” When I asked to schedule for the following day, they said I should “Call first thing in the morning, bright and early at 8:00 a.m. sharp, and maybe you can get an appointment for that day.” On a different occasion I was told to go to the emergency room if I couldn’t breathe. Well, I could obviously breathe: I was talking to them. On another occasion I was told that the rash I had “was likely a granuloma because, you know, you have a history of granuloma on your face.” 🙄

So, I kept soldiering on until last weekend when family was in town. I was trying to socialize, but my facial deformities were so bad that family wanted to know if I were alright. No, actually I wasn’t.

Not only was my face drooping and paralyzed but my tongue was numb, my taste was screwed up, and I could not open or close my mouth. It was so bad that the next day I barged into the doctor’s office without an appointment and demanded to see someone saying that I thought I’d had a stroke. Someone showed up in seconds and said “What are you doing here? You should be at the hospital.” I wanted to know if there were anything that imitated a stroke that I might have. The only thing the doctor could come up with was to ask me if I had any tick bites. No, no tick bites. “Then get to the ER!’

So, off to the ER went Bitey Mom. When I got to the check in, they asked what was wrong, and I told them my doctor thought I’d had a stroke. “Stroke!” they yelled into their walkie-talkies, and I was quickly whisked away. After doing blood tests, pee tests, heart tests, reflex tests and a CAT scan, the ER doctor determined that I hadn’t had a stroke but had Bell’s Palsy and a whopping bad case of TMJ. I was surprised because I had been told I had Bell’s Palsy before, but this felt different enough that I didn’t recognize it.

To my surprise and joy, the ER doc actually listened when I told her about what had been going on with me. She even asked questions. After she told me I had BP, she said she thought it was triggered by a virus and gave me some comically oversized anti-virals.

*

Even horses won’t take these.

Then the doctor asked me if I have any family history with autoimmune diseases and she listened when I said “yes”. (At least four doctors brushed me off when I told them about my family history.). She said that from the symptoms I have been having, it looks like I have lupus. I told her about being tested for MS last year because of how much my symptoms resembled MS. The last doctor I went to said that it looks like what I have is MS but pre-lesion. The ER doc reassured me that I don’t have any lesions.

Shortly after my ER visit I could feel that the Bell’s Palsy was not going to stay on one side. By the end of the day it had encompassed the other side of my face as well.

I feel really self-conscious because I can’t smile. My Resting Bitch Face is somewhere between pained and angry. I tried to engage Toby in some play when I got home from the hospital, but he misunderstood my facial expression (or lack thereof) and growled at me. I make sure to use a super cheerful voice and positive body language when I work with him now.

The Many Faces of Bilateral Neuralgia

I hadn’t realized until my ER visit that the nerves that controls the face and the trigeminal nerves are so close together. I have a lot of swelling in that area of my head that it has affected both. (As well as my ears. I am having hearing problems too.)For a couple weeks now I haven’t been able to close my mouth to chew. I was just swallowing chunks of food, but that led to stomach upset. Eventually I gave up and started pureeing my food. It looks like meal time at the old folks home, but it sure feels good to eat again.

I asked the ER doctor about the awful pain in my head (scalp) that feels like I have been badly beaten as well as the occipital neuralgia, and she told me that is likely due to the lupus. Out of curiosity I looked up how long lupus flares last, and most descriptions say a couple of days. What?! This has been going on over five weeks. I am exhausted because I can’t stand to put my head on a pillow. My neck hurts too much for me to sleep more than three hours. If this is what lupus is like for me, then it is going to be a difficult future.

Next I’m supposed to see a rheumatologist. I made a bunch of calls and ended up with an appointment for Dec 21. Yeah, something tells me that isn’t going to happen. My neighbor is encouraging me to do a televisit to see if I can talk to someone sooner. Evidently I look really bad, and she is worried about me. I’m going to see what I can do about that on Monday.

I don’t like this mommy.

She looks angry and is too tired to

spoil me the way I deserve.

44 Comments

  1. ssnowdrops's avatar

    DEAREST LESLIE I AM SO SOY YOU ARE HAVING TO WORK WITH IDIOT DRS EXCEPT THE ER LADY . WRITE A LETTER VOICING YOUR DISPLEASURE AND ADDRESS IT TO THE GP AND HAND DELIVER IT. KEEP A COPY AND KEEP A LIST OF THE TIMELINE

    IF NOTHING ELSE IT WILL RED FLAG THE DR AND YOU WILL HAVE IN WRITING A TIMELINE YOU CAN REFER TO. AND AS ITS POSITIVE ACTION ON YOUR PART IT WILL HELP YOU TO FEEL MORE AS IF YOU HAVE CONTROL BACK !!!! THAT ALONE IS WORTH DOING IT FOR !!

    HUGSSSSSSSSSSSSSS

  2. Helen Devries's avatar

    So finally someone listened! I hope the antivirals work…they look like small bombs. You could write to your GP just explaining that the ER has given you a diagnosis and you would like to have his/her/its views.
    Poor Toby…he’ll be worried about you.

  4. martywal's avatar

    All I’ve ever heard about different autoimmune disorders–and I have no personal experience, thank God–is that they defy both diagnosis and treatment. That has to be SO frustrating/discouraging! I hope you finally have this nailed, and I pray real help will be forthcoming. 🙏🏼 🙏🏼 🙏🏼

  5. doesitevenmatter3's avatar

    I am so sorry you’ve been going through all of this! 😦 I have tears in my eyes just thinking about all you have gone through. 😦
    But I am so so SO glad someone listened and offered help. I hope from this point forward, you will get even more help…and some relief, physically and emotionally. ❤️
    As our pups are so intuitive, I know Toby has known something has been wrong. If he could talk, he probably couldn’t offered a diagnosis a long time ago. 😉 I hope Toby will get some extra snacks of his choice. That will help him. 🙂
    Yeowza on the size of those pills! 😮 I can see why horses won’t take them! 😉
    Hang in there! We want the best for you! We care about you! Keep us updated!
    (((HUGS))) and ❤️❤️❤️
    PS…I had a similar experience (with my Costochondritis). After many decades of pain (thinking I was having heart attacks) and a multitude of tests run and many trips to ER’s and many appointments with my doc and other docs/ specialists, it was an ER doc in a small rural town that diagnosed what I had. I then scheduled a “check-up/physical” with my doc and after telling her what I was told, she said, “Oh! If it’s that, it’s VERY painful!” I almost laughed in her face…”No, crap, doc! I’ve been having the pain for decades! And IT IS VERY painful!” But, after finding out Tylenol Arthritis Pain caplets help when the pain is bad, I finally found some relief.
    It was frustrating when docs looked at me like “We don’t know why you are in pain?” Sometimes I felt like they felt I was nutty. I would tell friends, “If I die of whatever this is, that no one seems to know what it is, please put on my tombstone, ‘I told you all I didn’t feel well!'” 😉

  6. Anony-mouse's avatar

    I’m so sorry you’re going through this. I don’t have anything super helpful to say, except maybe you might have to consider leaving your immediate area for more competent care.

    As a side note, thanks to your title for today’s blog entry I learned a new word! A luchadora is kind of scary looking 😧 , so I choose instead to read it as “lunch with Dora” and that cheers it right up! 😊 For lunch we can have finger sandwiches and lemonade, plus snack cookies for our terriers. 😀 🐶

    Anony-mouse and The Terrier

  9. Reiko's Journey's avatar

    Well you certainly have a major case of the miseries! Ai yai yai. It’s got to be world class frustrating that you can’t get a straight diagnosis and plan of attack to overcome the symptoms. My Dad (who was a Doc) was always a proponent of getting to a top tier research hospital when the local Docs couldn’t figure stuff out. You live pretty much in the boonies so that’s probably a challenge but maybe a medical vacay of sorts could be worked in? My only other observation from personal experience is that a combination of ibuprofen plus acetaminophen works tons better than either individually. Obs you want to pre-check that with your Doc first. Wish there was something we could do to help. Despite his protestations of innocence, I suspect Toby’s furballs have something to do with it.

  11. Julia's avatar

    I am so glad the ER doctor listened. If your doctor thought you were having a stroke, they should’ve called an ambulance to take you to the ER. Telling you to go to the ER was absolutely irresponsible. What if you lost all control of the car? Calling for an ambulance would have been the right thing to do for someone having a stroke or heart attack. I am so glad the doctor at the ER listened to you. If you have her name, maybe you can see if she practices medicine outside of the hospital and make her your doctor.

Leave a comment