Originally Posted by bizzymum42

Hi, I'm new to this forum and to forums online. I've read many posts and found lots of validation for what I'm going through.

My story:

I have a history of fatigue and weakness. My eyes were first affected with double vision last year, though I may have had blurred vision and weakness before that. Bulbar and eyelids have been mostly affected - but so subtle. I was seen last fall by my primary for leg weakness and difficulty standing - he suggested Lyme Disease, but not much came of that, my tests came back negative. These episodes were fleeting and I wondered if it was in my head. No pain.

I went to the hospital a month ago and was admitted for extreme weakness and shortness of breath. I mentioned MG because I'd been doing research about my symptoms. The ER doctor said my symptoms looked a lot like MG and ordered labs. MG Panel negative. CT of thymus normal. Waiting for Musk labs.

In short, I think I may have - but of course can't be certain - caused the extreme weakness by taking Magnesium (and other vitamins) supplements for PMS. I just started 7 days prior to this episode of weakness. I stopped the supplements as soon as I started to experience weakness - thinking it was the only change I'd had in my diet and environment.

Within a couple of days after the onset of weakness it got so bad, that I was afraid I'd stop breathing. My diaphragm muscles wouldn't contract and at times I couldn't speak.

Unfortunately, not all the doctors who saw me at the hospital understood what I was trying to say. They saw my pulse/ox number drop a little, my HR go up, but it didn't tell them what I was going through. The machine lights kept going off and beeping but people would come in, turn it off, and ignore me. I was so scared I wouldn't get the help I needed. Even my husband didn't quite understand at that point, as he was by my side trying his best to advocate for me. Eventually they called in a respiratory team who noted that my breathing was variable. Sometimes a good breath, sometimes not so good - later I was told by a discharging doctor that was a subjective test and didn't prove anything - he didn't believe this could be MG. At the time the ER doctors decided to admit me for observation and a complete neuro work-up.

Then I was wheeled on a gurney and left in the hallway by myself for 2 hours. My husband had to leave to get the kids settled at a friends house for the night, and I was waiting to be admitted. He had no idea I was going to be left alone for so long. I just relaxed, tried not to be scared, and wondered what I would do if I needed help. I was so weak.

Eventually I was taken to a room. I wasn't any better and still having trouble talking, eating or drinking, breathing, and walking. I mentioned MG to the nurse who said that was what she was thinking. I had read about MG before, so I focused on relaxing my body and when I did, I would regain strength. But with exertion I would get worse again. By morning I was getting much better, I think because I relaxed and tried not to move a muscle. My husband spent the night with me and held my hand and watched my breathing.

One weird symptom - I started to shake. When I wanted to move and was too weak, my whole body would shake. I could relax and calm it down. But if I was upset, I shook. I shook HARD when I couldn't take a breath. I was aware of what was happening, I was working hard to get my muscles to move. If I had pain from lying in one place, I shook. When I relaxed I stopped shaking.

I also found I was compensating - from what I could see so far -by using other muscles or moving my tongue in a weird way to speak. It made my face look weird and my speech slurred and nasally.

My expectation was that I would receive the help I needed at the hospital. I had explained everything to two doctors in the ER who seemed to think I could be experiencing MG - but wanted testing to be sure before any meds were administered. And at any rate, saw that I had extreme weakness and needed further observation and a neurological work-up. I expected that I would be getting assistance for what I was told I was admitted for. But that didn't happen. I felt let down in a big way.

I was discharged the next day by a doctor who admitted he didn't have time to review my medical record, but he had seen me the year before when I was admitted for double vision (they wanted to rule out TIA and all tests, MRI, were normal). I was shaking when I heard who the doctor was just moments before he arrived, and shook worse when he entered the room. I wanted to climb out of that bed so badly and look him square in the face. I had a terrible experience with him the prior year. I wish I had the foresight to refuse him and request a different doctor - not sure what that would have done.

This doctor saw my shaking and demanded to know why I was shaking. I tried to explain but he wouldn't listen. He said it was psychogenic conversion disorder and like nothing he'd ever seen before and I needed a therapist. He brought in a neurologist who also admitted to not having time for me, but had to agree with the discharge doctor. I was told that this was due to anxiety and depression and not a neurological condition, but if I stayed in the hospital I might end up with a spinal tap and I didn't want that because it could result in paralysis. OMG!

I was sent home with the offer of anti-depressants, which I refused(I wasn't complaining about depression!) and orders to follow up with a therapist. I gave up trying to explain things to the doctor and wanted to get home - so it was a mutually agreed upon discharge. I was so discouraged! And really nervous about my health.

I left with my head drooping in my lap and eyelids drooping (mostly the left) and slurred speech. I tried hard not to let it all droop, but I didn't have control over my weak muscles. I stayed calm so I wouldn't shake.
The nurses asked me if I really wanted to go home. I said absolutely - what choice did I have? I bumped into the nurse who was with me the night before - the one who thought it looked like MG - and she expressed her concern for me; saying that I'd been on her mind all day. I told her thanks as I left and I was heart broken that the last two doctors couldn't have been half as observant, compassionate, and understanding as the nurses.

So I went home, got in my cozy bed, stopped shaking, relaxed, and continued to work through the weakness, including the difficulty breathing. At times, I was really scared I'd stop breathing and wasn't sure how long my diaphragm would stop contracting. I called the on call for my primary physician who was out of town, to ask for a referral to a neurologist for a second opinion. He refused on the grounds that he had to go with what was said by the discharging doctor at the hospital. I was so upset.

After a couple of days, I went to a different hospital for a second opinion - we're in a rural community so I went from a small hospital to a smaller one. By this point my breathing was better, but we were having a heat wave with no A/C (just a swamp cooler which isn't very effective when its reaches past 100 degrees)) and I wasn't feeling so well. I relaxed at the hospital so I didn't shake - I had control over that part.

I was thoroughly examined for weakness by a nurse who said I needed minimal assist to ambulate, and needed to be given plenty of time to relax between movements so that I could function. I saw a physicians assistant who said I was experiencing weakness and to follow up the next day with my primary - who had been out of town during all this. The little hospital didn't have a neurologist on-call or the facilities to help me. Since my vitals were stable, I was sent home.

Once I saw my primary the next day - via a wheelchair and my husband helping me keep my head up - I was referred to a neurologist. That appointment isn't until the end of this month. I didn't get any other medical help - oh, I was offered muscle relaxers and PT by my primary. I refused both. At least I got the referral to a neurologist.

I'm recovering without medical help but not completely well. It took three weeks to get back on my feet enough to start caring for the kids again and cooking meals. I relaxed as much as possible and focused on plenty of fluids and good food. I had a beside commode, wheel chair, and shower chair delivered by a family member who works for a hospice program, which helped me with ambulation and getting the rest I needed. Other family and friends helped with caregiving and taking the kids off my hands for a few days.

Oh, I did have a nasty rash around my mouth which certain foods made worse, so I avoided anything that aggravated that rash. Not sure what that was about. Its gone now. I do have a life time issue with eczema and food allergies.

Everyday I saw improvement; a steady upward climb for the most part. I'm nearer to normal functioning now. I breath normally. I can feel when I need to rest before my eyelids start to droop or my speech slurs. I have noticed that light exercise, especially swimming for a 10-15 minutes, seems to help. I over did the swimming one day and was weaker - slurred speech, droopy eyelids, over all yuck, weaker limps - and feeling lousy for two days. Thankfully, I got home okay.

Stress can aggravate it, even good stress. When I'm happy to see my hubby come home, I'll start to slur. When I'm stressed about the bills, I'll start to slur. These days I start slurring my speech while trying to read a book to my 8 y/o. I'm worse by the afternoon. I'm worse in the heat. I'm worse if dehydrated, even a little. I'm worse when I have to talk and be assertive. I'm worse if I talk to much, which I love to do.

So far my MG panel came back negative. I'm waiting for the Musk results. I have my first neuro appointment at the end of this month.

The thing is, I'm really nervous about seeing the neurologist. Will this new doctor listen? Am I going to get the help I need? What will happen if all my test results are negative but still having symptoms? Does that mean it's all in my head?

I do have a therapy appointment, with a very good, long time therapist I've known for 20years, to help me with the stress of this unknown illness and finding proper care. She knows me pretty well and hopes I get better soon.

And just to get it out there, I'm not someone who likes to see doctors. A few years ago, I had a torn retina with symptoms for months before getting it checked out, then it was emergency laser surgery. I didn't even know what a torn retina was - stupid, I know. My point is, I don't see myself as a "complainer" but with these episodes of weakness and no test to explain it so far, I'm concerned that I'm starting to look that way to the MD's.

Thanks for listening to my long rant. I hope this helps others and I look forward to your input.

Sincerely,
Jennifer
42
Homeschooling mom to two boys 8 & 13