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

I think that most of us that have eventually been diagnosed with MG were initially told that we were crazy. I agreed to be evaluated for insanity and the psychologist didn't think that I was crazy. My first neurologist had no idea what was wrong with me. My second neurologist diagnosed seronegative myasthenia gravis. I am on mestinon, and it helps tremendously.

So sorry to read your sad story. Not only was the care given to you inadequate, but the outcome because of it could very well have been worse.

Trust your gut! If you feel there is something physically wrong with you, pursue it. You are the expert on you. For what it's worth, you seem very likely to have MG just from your description of the symptoms. You state things that aren't written about online about MG, but that happen.

The treatment you received at the hospital by the doctors was appalling. Threatening you with a LP was beyond unprofessional. Unfortunately, the fact that you left (fled for your life?) will only reinforce that horse's behind's beliefs that you were having a psychogenic illness. I think it's payback time!

In order to restore your dignity and validate the symptoms you had, as well as possibly prevent someone else from being mistreated in the future, I suggest you file a complaint with the state medical board. I am not suggesting to do so because he disagreed with you, because that does happen. Instead, I would encourage you to report his threatening behavior as that was cruel and unnecessary. The doctor who refused to read your record because he didn't want to take the time should also be reported. You can remain anonymous.

I don't know how far you've been traveling to get proper care, but I would suggest you continue traveling until you find the help you need. I am in rural Texas and travel over 100 miles to my neuro clinic. I am fortunate to have a good PCP who can help bridge the gap if needed.

In the meantime, keep resting and keep researching. Let us know when you get the MuSK results as well. I am MuSK positive, so all of your symptoms seem very familiar.

Take care and good luck.

"Appalled" is the perfect word, 4-eyes! It is clear that you are as outraged as I.

"... 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!"

There is no time, nor venue, nor circumstance, where this comment is acceptable. And further, if I could speak to this sorry excuse of a "wanna be psychologist" we would have a little talk about his profound lack of intelligence because there is no right answer or action to his comment/question about the puncture. And worst of all, he hit someone when they were down...and that....is unforgiveable.

So sorry to hear you went through this... it is sooo frustrating!!! WHen I'm feeling really bad, I dont' want to waste my time going to the dr as It seems like such a waste of time most of the time... and then I'm made to feel just stressed or crazy - which is frustrating..

A good dr needs to think outside the box, outside of the test is negative or postive and thats all.. good dr;s are hard to find!

I also get the trembling sensation when I have adrenaline going.. I get much more weak.. if it's good adrenaline (when we closed on our house), bad (if I get mad about something) etc.. all my muscles get trembly and I can't even smile with my facial muscles as they just won't work.. it takes about 15 min or so for it to all calm down.. frustrating.. (I dont' have a firm diagnosis, but did end u crashing and in the hospital with low PFT's which is why they started IVIG)..

good luck, and hope you can find a Dr!

It's acceptable to say it when it's true. After all, if that's what they do, you want to know.

I'd have asked whether they'd done them on people before, why they had done it, whether they'd paralyzed them and what their life expectancies were after the procedure.

After hearing the answers (although I hear doctors are pretty secretive about those kind of statistics and I don't really wonder why), I think I might have wanted to slip out unseen so they wouldn't kill me.

I echo all of your feelings as well as the other posters. I am fortunate that the area that I live in there are many neurologists. I am on my 7 th one. so far. He has helped more than all of the others. He listens and allows me to participate in my care.

Good luck and God bless

I understand that patients must be advised of the possible risks of any procedure or medication--that is academic, and not relevant to this particular experience.

Heat Intolerant, the doctor had no intention of giving Bizzymum a Lumbar Puncture. We commonly refer to this as "practising medicine from under a rock..."

To deliver those words with the intent to "psych out" and frighten this patient, or any patient for that matter, for the primary purpose of wanting them to leave the hospital remains absolutely unacceptable.

I want you all to imagine for one moment, what Bizzymum might feel when a
another physician, who is in earnest--wants to get to the bottom of things--suggests a Lumbar Puncture.

Bizzymum, I am so very sorry for your experience.

Jennifer, I'm sorry for what you've been through too but I want to offer up some concrete help for your situation. No, guys, I'm not "back" but I can't turn away from a newbie.

Frankly, Fortunatos and Heat Intolerant, being left in a hallway for 2 hours where Jennifer could've stopped breathing seems to be a far bigger issue here than reckless comments by a medical professional.

Have you been seen by a neuro-ophthalmologist? When you are seronegative, it can help to get the opinion of other specialists. An N-O can evaluate the cause of any double vision, objectively calculate fatigable ptosis and do a Tensilon Test to see if your ptosis improves.

You should see a pulmonologist as soon as possible. You don't want to put your health at risk to see one, however. I've included a few PDF's below to give you more info. They can evaluate your breathing problems thoroughly. They should do full PFT's (pulmonary function tests) and make sure they include the neuromuscular specific ones: MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure). MIP and MEP will show how you are doing at breathing in and out. Make sure you ask to get ALL of the "tries" and not only the highest one. Why? Because trends in those tests are important to look at when you have a disease that is fatigable. Other breathing issues like COPD are "static" and don't usually change from breath to breath. At least not as dramatically as MG does.

If you are close to an MG crisis, breathing can change very quickly. If you are still doing very poorly, and your breathing tests are reflecting that, they should run an arterial blood gas (ABG). That "shaking" you are referring to (see article below) could've been a buildup of CO2. Right before CO2 builds up, the ABG can look like you "have" hypoventilation or hyperventilation. Judgmental and sexist doctors can automatically say that you are anxious when, in fact, you are not.

This psycho babble when someone is not breathing or moving well helps no one. It does not appear that they did any objective measuring of your condition via PFT's or an ABG. Did they even do a clinical exam and rate your weakness on a scale of 5? If you are weak, for example, your "rating" can be as low as 1/5.

Did they try the Ice Pack test on ptosis? Did they do an upward gaze exam to see if they could fatigue your eyelid muscles? Did they go to medical school?! They all have quick access to any medical info they might need. Even a layman can Google the steps to assess MG.

When the body needs more oxygen, the heart beats faster to get it more. When that doesn't work anymore, the O2 begins to drop and the CO2 begins to rise. I can't believe they dismissed even that small drop accompanied by the rise in your heart rate. DUH. This is basic body mechanics. You need muscle strength to breathe that oxygen in and CO2 out. It's a pretty simple equation and people who are healthy do not have those issues.

A neurologist is not a pulmonologist. You need both to help you if you have MG. So don't expect more from one kind of specialist. You need to have someone assess your breathing very soon. You do not sound "stable" and should not let your poor treatment at the hospital keep you from seeking out help again. An MG crisis is an emergency! If you can't breathe well, can't move well, can't swallow or feel that things are going downhill (fast or not), you need to dial 911. The EMT's can give you oxygen and assess what's going on and might help your eventual care by an ER doctor.

When I fell recently and hit my head, the triage staff threatened me with paralysis if I didn't let them put one of those damn collars on me. She proceeded to call me an idiot if I didn't. No, those comments are not at all professional, let alone nice, but that's what they are tending to do these days to cover their legal derrieres. It's sort of funny that it's not at all about you but making sure THEY don't get harmed.

Have you taken photographs of your face when you are doing okay and when you aren't? If you use the same face angle, lighting, exposure and distance from camera, the photos will be taken more seriously. If you have MG, the difference can be quite dramatic. You can also do an ice pack test yourself by putting even a cold washcloth that's been soaked and then put in the freezer for a bit (softer than a gel pack) and then take another photo.

Even if it's not MG, it's not nothing. This is not all in your head! It's in your muscles/nerves.

I am sorry for what you have been through. What you need to do now is to get some more opinions from other experts. And check in with your primary doctor too, if you have one, to rule out other confounding possibilities like a thyroid issue. I hope you get help soon.

Annie

http://www.ncbi.nlm.nih.gov/pubmed/3610940

http://curecmd.org/cmd-care/in-depth-tutorial

Attached Files

	NMDiseaseCausingAcuteRespFailure.pdf (120.9 KB, 1703 views)
	NonInvasiveVentilation.pdf (76.9 KB, 1703 views)
	MGCrisisExtubation.pdf (73.1 KB, 1823 views)

I want you all to imagine for one moment, what Bizzymum might feel when a
another physician, who is in earnest--wants to get to the bottom of things--suggests a Lumbar Puncture.

Bizzymum, I am so very sorry for your experience.[/QUOTE]


Thank you all for your insight. In every post I'm hearing validation and support. It's what I needed. I wanted support and also to shine light on this. I read about patient's with similar symptoms being mistreated, but holy cow. I wasn't expecting that.

The first hospital I went to didn't have to tools to help me - to put in kindly. And without the tools, it was more harm than good in my opinion. Doctors need to keep an open mind, too. Psychogenic disorders, from what I've read, can't be diagnosed in a short meet and greet. I want a neuro work-up AND a therapist.

to shine some light on the positive...
I did go to another hospital ER. They actually SAW my symptoms and expressed concern and called it what it was - "weakness" with an unknown cause. They told me how important it was to keep trying to get medical help. Validating and supportive! At least they were humble enough not to come to conclusions too soon.
They gave my primary a second opinion to look at. I've got his referral and support, so far. He seemed to be glad I went for the second opinion.

I'm doing better and better. Keeping a plan for getting the help I need helps. How many doctors we have to go through - its sad and daunting to consider. Keeping strong! Keeping my eye on the ball. I'll let you know when I get my labs and see the therapist.

Thanks for the support!