Out Of Hospital, No Help
 

Hey everyone,

I hope you don't mind but I need to vent all of this out of my head - it's been swirling around all night. I just need to tell this to people who can maybe understand.

After my initial diagnosis I've been having a lot of trouble with my neurologist, I'll call him Dr. X. I was supposed to have tests done (pulmonary and emg) towards the end of November and then see him a week later. I was getting sicker and sicker and three times I got a call from his office cancelling the follow up appt and pushing it back to Dec. 24. I got a final call cancelling that appt but they managed to get me in on the 15th. So my SIL told me when you're down there for tests just show up at his office so they can see how sick you are. On the day of the tests I was half dead, out of breath, face falling down when I arrived at his office. I told them I was really sick and that I wanted stronger meds. I got a call back, not from Dr. X but one of his staff saying that he couldn't see me any time before the next scheduled appt but he'd call me back within the hour with the results of the tests (I never had heard back on the original blood tests either). I never heard from him again and as the weeks went by I was too sick to do much about it.

Finally, last week I went in to see a pulmologist locally and showed him the data from the pulm test. The spirometry was normal (it always is) but the mip/mep were 50% and 25%. He said that was typical of mg and also the difficulty breathing when I am reclining and lying down (I no longer do either without a ventilator) was typical. The next day I get a call from Dr. X's office: my pcp had called him wanting to talk about some pulmonary tests. Where had I gotten them done? Duhhh!!!!!! Dr. X had ordered them himself. A couple of days later I went into the PCP. She told me she had talked to Dr. X and while he diagnosed me with mg he wouldn't treat me because he did not feel the trouble breathing or the facial weakness were symptoms. He said the pulm tests were normal. I'm sorry to say I cried. I felt so hopeless. I told her what the pulm up here said. So she called him again and came back and said he wanted to run a SFEMG and he was going to try to arrange it for my next appt the following Tuesday. He'd call me for sure tomorrow.

I never heard from him. In desperation, hoping to talk to him I flew down for the appointment. Stupidly alone. After the traveling I was an absolute wreck. Even after waiting 2 hours past the appt time just walking into his office I couldn't breathe. We talked (me panting and trying to breathe) about the pulmonary tests. He said they were normal, I said what about the mip/mep to which he replied that it doesn't mean anything because people just don't try hard enough. I said I tried as hard as I could, that it almost killed me. I told him this was getting very dangerous and I wanted immunosuppresants. He insisted something else was wrong and wanted to admit me to the hospital. I said I couldn't afford that, my insurance company was going to try to say the hospital was overcharging and would only pay 50% since it was out of state. At that point he got irritated and asked me why I do that? I was so confused. I asked him what he meant and he said basically, if you can't afford health care than you should stop trying to get it, just go home and try to survive. Wow. Anyway he made it seem like it was impossible to help me unless I agreed to being admitted. So I gave in.

I'll try to make this short. They got me a bipap so I was able to breathe. Used that all night. The next morning went in for the SFEMG, which was excrutiating! Now keep in mind that I don't have ptosis, I have a severe eyebrow droop and sometimes my mouth will droop on the right side too. He tried to test the muscles that lift the eyebrow but couldn't get good data. Then he went down and inserted two needles, one at the rt corner of my eye and one down from my cheek bone. I asked why they were testing there since my eyebrow was week. They said that they were testing the muscles that open and close the eye bc they were better researched. But I don't have any ptosis whatsoever. At any rate, the test came back negative. I said to the neurophysiologist that it seemed logical to me that since I clearly have a severe problem with facial weakness that the nerve and muscle tests haven't picked up then either the tests didn't work or I need another kind of test. He told me to see a plastic surgeon.

Time went on (dollar signs adding up!). I had a ct scan, an echocardiogram. Another full day of resting and I was looking good. That afternoon they came in and tried twice to give me an arterial blood gas. It didn't work and the nurse came in and we decided it was silly at this point to get one. I was no longer out of breath. So he called some doctor who said yes, we need it. At 10 that night, after a full 30 hours after being admitted and now fully rested they got the abg. I'm assuming it came back normal. The next day, by now two days after being admitted, and resting on the bipap, they gave me a positional spiromety. It came back normal (I was feeling good, and I'm a barrel chested singer - honestly I don't think I'll ever have an abnormal spirometry until I have one foot in the grave). By the way, I was told that the bedside mip/mep were low for the first few hours, but the next afternoon the mip was low-normal but the mep was still quite low (I haven't verified this just got it from the rt).

At this point I was frustrated, still hadn't seen or heard from Dr. X. I decided to make myself sick so I could show them how it gets. After 10 minutes of walking in the hall I was completely out of breath for the rest of the afternoon, the right eyebrow had fallen below the brow bone. I reclined in my hospital bed and was able to verify that my oxysats would fall after about 10 minutes to between 90 and 93. I felt like there was a giant rubber ban around my chest. I told the Dr. (fellow) all of this. She could see it for herself but it didn't seem to make much of an impression. I asked when the neurologist would come to talk to me and she said he wouldn't, that they were going to discharge me. So I wrote down exactly what was happening, the date and time and signed it. When they came back to discharge me I told them I wanted that entered into my chart. Suddenly, they're concerned. Suddenly Dr. X gets called and Dr. X is concerned. Thinks I still need to stay in the hospital. I told them (politely) that this is how I always am and I can't afford to stay in the hospital forever or even another night, and I don't want to stay in the hospital. What I want is some treatment. They said, fine you can leave bc we're not going to help you, just sign this form. Eventually they brought up the form which was to release them from all liability. I declined. By the way, I never did actually see or hear from Dr. X while in the hospital.

By the time I got to the airport I could barely breathe, my face was falling down. I called my father, sobbing, who told me to get a taxi to a hotel when I was able and he would fly up and help me get home. I finally got back yesterday.

So, that's my story. Call me crazy, I still think I have mg. I don't have much limb weakness, but hey those antibodies aren't hanginging around playing poker and not doing anything. I am fighting a tidal wave of despair and depression in addition to worrying about the bills. I'm not sure what to do next. I suppose I'll wait to get a second opinion from the east coast. The waiting list is a year though.

Anyway, thanks to anybody who managed to slog through this. I really appreciate it!! I just had to get this out of my head.

Ally

Ally,

I am so sorry to hear what has been going on. Without a doubt, you don't just need a second opinion....you need to replace your neuro forever.

What state or country are you in? There are lots of folks here who have had success with their neuros and I was just thinking that maybe we could share the name of a neuro who does 'believe in' MG's existence and who is relatively close to you.

Are we allowed to share the 'good docs' clinics or names that we have had personal experience with in this forum? Because it sounds like you need to find someone to help you long before a year from now.

Sue

Sue, I was just thinking the same thing.

Hi Ally,
 

Im so sorry they are putting you through all of this.

I have to repeat what the others said you need a new neurologist.

If you get bad you must go to the ER.

My thoughts are with you.

Love
Rach

Ally,

I read your post and didn't know what to say.

tell you that I have had similar experiences? how would that help you.

tell you that after 4 years of an impossible struggle, I have finally reached someone who is different? will that be enough to give you hope.

tell you that you are not crazy, but this illness is? you already know that.

tell you that if there is anything I can do with my limited abilities to help, I will be glad to do that.

but, I too, even now, with the much better care I am recieving, and all the support that I have, find myself swimming against the waves.

I can tell you that I have heard the BS about the effort dependent respiratory tests not being reliable because people don't try hard enough, too many times, even after I had clear and objective evidence for significant respiratory muscle weakness.

I never heard it from any pulmonologist, but quite a few neurologists seem to think that way. why? I really don't know. is there any thing that can be done to change it? I am not sure either.

why do they think that a patient with MG, would have MG-like symptoms due to other reasons? this really beats me.

all I know is that by now, I have met way too many people whose life has been significantly disrupted not just by this illness, but by the way it is managed (or rather missmanaged). and this has to change.

alice

Hi Ally,

I am so sorry for what you were put through. You sure need help and soon. I hope you find a good neuro who can see you right away. Take care and please keep us posted.;)

Hugs,
Pat

Ally, Your story is an overwhelming indictment of medical models which put the patient in a double bind of impossibility. Your telling it must make you feel like no one was hearing or believing you. (Or even their own eyes right in front of them!). Crazy making in the extreme. I feel deeply saddened that you had to go through all this. There are doctors who can help, clearly those so far, are doing the opposite. For whatever reasons; insecurities around not understanding the disease etc... Try to see it as their problem if you can.

There is nothing wrong with your own clarity about what is happening.Your story sounds very clear and level headed. Crying and getting mad are valid in the right situation. Any doctor who dumps on a patient is no professional and should be reported to his boss. When you feel up to it insist on sending in a report on dr who told you just go home and survive. What a 'bleep' head!

Hang in there, believe in yourself and just walk away from those who have no ability to regard you as the expert on your body and what you know to be going on. The law of averages says one of them will be a true healer. We just have to expect to hit some duds along the way. Good luck to you. Keep writing and I am wishing you healing in your heart and your body for christmas Best wishes TT :hug:

Ally, I can't even say how sorry I am for all that you have been through. I personally know exactly where you are at and it has caused me such bad PTSD. To know that those who are supposed to help you, and are the only ones who can, aren't helping or won't help you is a very threatening feeling.

What I found simply nonsensical is this: "he did not feel the trouble breathing or the facial weakness were symptoms." That's crazy. What were they from then?!!! Since they had admitted you, they were responsible for figuring that out.

You can tell when medical "professionals" have gone from caring about you to covering their backsides when they start speaking illogically; denying all evidence that you have MG that there is. They were obviously trying to keep themselves from a lawsuit, which TT just said, is fast becoming the norm. Instead of helping patients, the moment they "fear" that they have done something wrong, they send in the risk managers and lawyers and do not help the patient anymore.

What can we do to help? Can any of us tell you of a doctor whom we know that might help you?

Your MIP and MEP readings are always "relative." Unless you know what your "normal" is, your doctors can't say that what your numbers were are normal. To me, they are definitely not normal. My normal MIP and MEP are in the 80's. When I get worse, they are about half that. When I'm near a crisis, they hover around the mid-20's. I know exactly from my breathing tests at what "phase" I'm in. And that is why I often go nuts about everyone with MG needing a pulmonologist (a good one). That way, you can show a consistent history of breathing tests to "prove" what your normal and not normal are! ;)

I wonder why they couldn't get an ABG on you. Some techs just can't do it well. They should've gotten a senior one to do it. Damn, because that would've been valuable. Does your pulmy do them? It still needs to be done because it would be "proof" that you have a breathing problem. They can't say an arterial blood gas shows trouble breathing because you didn't try hard enough!!! :cool:

Do you have copies of the antibody tests? Can you say what the binding, blocking and modulating were and the ranges?

I would highly suggest doing the following. Document. Write up in a very simple format the results that show you have MG. Have different headings like Breathing Tests or Myasthenia Gravis Antibody Panel and then list results underneath. Take photos. If you haven't seen a neuro-ophthalmologist, try to see one and have them document any ptosis. I didn't know I even had double vision until the N-O I saw pointed it out. And then I would go as far to take this list or lists of proof and go to whomever is "above" your neurologist and ask him what the standard treatment is for someone with MG. They have to give you the same standard of care they do for every other MG patient or they can be in hot water with the state medical board.

I'm sure you've gone to the ER before - what did they do?

If you get worse, please go to the ER. I am worried about you. And all this stress is not helping. YOU HAVE MG. You had antibodies. And, by now, you probably have antibodies to neurologists. ;) Again, I am very sorry you are having to go through this. If you haven't gone through it, it's hard to even describe the terror of it.

LOTS OF HUGS,
Annie

Ally,

I must admit I'm lost for words, even had a tear in my eye!!! Maybe I could say something but I would probably get banned from the forum :-)
Just know I am thinking of you, although I wish I could offer some words of wisdom.
Please take care
Kate

Thank You
 

Thank you everyone for responding to my post. I'm sorry I've taken so long to reply, I've been so sick, but I wanted to say thank you, thank you, thank you. I really needed to vent, get the despair out of my head. Your replies made me feel like I wasn't totally invisible and unheard.

I would appreciate any suggestions for neurologists. Especially if anyone else has had respiratory problems and has had help from a neurologist who understands these problems. I live in Oregon, but I'm open to suggestions from anywhere. I'm pretty desperate at this point.

I am so thankful for this forum!

Ally

Bump.

Still looking for help.

Hi Bluesky
 

I can't believe that you've been treated this way- it's really rediculous- in light of the fact that you're seropositive too (not to say that people who are seronegative would deserve that treatment- there's obviously a reason why there's a type of MG called, 'seronegative MG' as it exists? :rolleyes:)! If I lived in the US, I might be able to offer more advice re. better neurologists. I'm not sure if you've answered this already, or already shared this, but have you ever been prescribed mestinon?

The breathing issues are so disabling- I know exactly how you feel. It's like the most essential part to 'living,' and not being able to do it 'right' or 'properly' pretty much ruins every moment of the day. I totally relate to what everyone's saying re. the 'anxiety' label and MG now. When I can't breathe well, or my bulbar issues are acting up, I gasp while talking, and those around me are like, "calm down- take it easy...you're getting too stressed out.' I'm like, "I'm not stressed out at all. I'm okay, it's just that I literally can't breathe, and that's why I'm gasping?" It's so tiring (both the inability to breathe and having to explain that I'm not anxious, but it's just really difficult to breathe sometimes.)

When I was filling out my paper work for LTD, my family doctor wanted to add 'anxiety' as a secondary condition. I barely see him (he's a very busy guy), and that day, my symptoms were acting up, so I was gasping a lot as well as slurring, and the good ol' nasal speech was present. I was like, "just to let you know, this whole situation *pointing to my face* is from the MG, not anxiety. I do feel anxious when I can't breathe? But it's not its own entity." It was really irritating, the whole situation. He just really seemed to be putting emphasis on a so-called emotional/psychological angle, as opposed to a very real, physical angle where there's a disease that causes people to not be able to breathe and this might look like anxiety since the people can't breathe and breathing is sorta really, like, important for continuing to live and things of that nature? Duh. (sorry, end rant).

Anyway, I'm sure they've done an FVC test on you. How are those figures? It's obvious that your lung doctor knows what's up. Can you possibly bring these diagnosis issues to him/her, and ask what they recommend you do? That doc. knows you're sick and in need of help. Maybe they could recommend someone who's got more marbles. Of course you could explain things in a more gentle manner than I just did.

I hope you get some proper treatment soon!:hug:
Nicky

Thanks For This
 

Nicky,
The way you describe breathing problems is so absolutely right on!

My close friends know that when I start talking and get out of breath that it's just me having a hard time filling my lungs. They'll say, "stop talking now, we'll talk for you - just listen." That's nice. People who don't know me and my situation think I must be some hyper-anxious person who can't even have a normal conversation without getting flustered and out of breath. Or when I get out of breath walking DOWN stairs I'll sometimes get looks like wow, you need to get off the couch and get in shape. That doesn't really bother me though. What does bother me is when my right eyebrow has fallen down over my eye and the right side of my mouth is pulling up (why does weakness cause my mouth to pull up?) and I look like I need to be rushed to the emergency room for stroke. I went to a New Year's Eve party last night and lasted about five minutes because I was so self conscious. People try to be polite but you can see their eyes bugging out for a fraction of a second when they see me. It's funny that I can freak normal people out but it barely registers with doctors. Anyway, it's been really hard going from someone who was kind of cute and slim to a lumpy freak in just a couple of years. Ugh.

I was breathing so beautifully on my bipap today. I actually woke up full of energy for the first time in months. I had my window open and I was breathing full, clear, cool breaths. AAAAaaaaaaaahhhhh. Oh, I was in heaven. I let myself drift in and out of sleep having happy dreams then waking up a bit and thinking about everything I wanted to get done. Oh, it was so nice. I felt . . . normal. Then I got up out of bed and bam! I'm working hard trying to get the breath in. Dang! I was so disappointed.

I do have mestinon which I do take. It's not enough but it's something. I suppose this last neuro won't cut me off even though he says I have mg but none of the symptoms are from mg. (By the way, what are all of you complaining about? This mg stuff is easy! No symptoms! LOL)

I'm really, really happy to hear that you didn't let them label you with anxiety. Not that people don't suffer terribly from anxiety, but a person shouldn't have to take being labelled with a diagnosis that they simply don't have. Good for you for standing up for yourself.

I have had several FVC tests and they all come back normal. One, when I was feeling good came back very good, I think it was 125% of normal. I think it's because I'm kind of a barrel chested singer. That's my theory anyway. I'm going to ask my primary doc to take an abg after I've laid down in her office for 30 minutes or so (I can never breathe lying down). Either that or hook me up with a co2 monitors.

Anyway, thanks for your thoughtful reply, Nicky. Are you on a bipap too? Or do your medications let you breathe?

Ally

Hey Ally,

I've been following yours as well as Cowgirl's posts, and I relate to a lot of what you girls experience. I also sing, and have wondered how that impacts the MG, though it's clear how the MG impacts it. I definately can't sing very well anymore, mainly because of the nasal tone to my voice (which kicks in eventually during singing), but also because I don't have the breath to carry notes for long. I especially cannot sing high notes- God, that's been going on for years now. The high notes can cause me to see stars. I almost fainted once when trying to sing a Celine Dion song (lol)- it was, 'I drove all night,' and I didn't reach my destination needless to say...lol...But yeah, it's very interesting that we all have breathing issues but have never experienced a crisis...I remember Alice mentioning that she thougth that it might be because we know how to use our muscles in maybe more varied ways than others who don't sing...I think there may be a lot of truth to that....

You mentioned not being able to close your mouth. I have this big time. When i'm very weak, I can't close my eyes completely, and have very weak mouth-closure.

I know what you mean about the looks situation. I feel freaky-looking as well. You know when kids buy those halloween masks that include a neck and that completely cover the head? I sorta feel like that. My face and neck are so large and disproportionate to the rest of my body. I try to wear extra frumpy clothes to balance things out. It's weird. The other night, I went out with a couple of friends and one of them ordered chicken wings. She's like, "have some- they're delicious!" I'm like, "You know that's going to go straight to my face, right? "As if this is the norm! lol She's like, "actually, I don't know that." :| haha One person's hips is another person's face...Ah, the endless fun of prednisone...

I also don't get much help from mestinon when it comes to the breathing...But to tell you the truth, mestinon really hasn't helped at all until I started plasmapheresis/prednisone...Not sure if it's 'cause my antibodies are extra tenacious, or too much damage occurred over too long a time, or some other antibody is at work that they may not know about...I think that it's a combination the last two together...

I don't have a bipap, but I'm planning on looking into getting one. My BF has a cpap. I tried that once and nearly suffocated. I know that I'd definately need a bipap if I started using an assistive device while sleeping, but i'm kinda restless and wonder if I wont pull it off.

I seriously don't understand what's up with your neuro.. He doesn't think that the fatiguable breathing problems and facial weakness you're experiencing is from MG? Then, yeah, what does the MG do then? Ponder its naval? It must read a lot of Sartre, and demand, 'what does it all mean, and why am I here?!' Maybe he's from the same parallel universe where everything is the opposite like where my old rheumy. is from. He also agreed that I have Lupus-specific antibodies, but that my joint pain, swelling and fatigue wasn't caused by that. Those antibodies weren't doing much, just existed due to some genetic betrayal. argh.

Well, I did let my doc. write down that I have anxiety as a secondary condition, just because he was so insistant. I kept asking him why he wanted to do this. He said that I've been through a lot and anyone would have anxiety. I said, 'okay, sure you can add it if you feel like it's important.' The thing is that I have had anxiety in the past, but this was long before I started with this doctor. I didn't tell him about it because I wanted my health concerns to be taken seriously, and I've felt that informing a new doctor about past mental health issues really taints the picture and thus things taking so incredibly long to be diagnosed. I've been having so many other symptoms for so many years, it's just crazy. In fact, I had some new EMG testing done on my arms recently and the neuro. told me that there's denervation in my forearms, and this is why I'm having fasciculations in my fingers. He said that MG will only cause this if it's been going on for years and years, and/or is very severe or isn't treated. I've had hand weakness since I was a young teenager, so go figure. Writing for prolonged periods of time has always been a problem for me and my hands would just go limp. I'd recover after resting, but then it'd start again. I had no idea that a disease was causing this. I had to drop out of college because I couldn't do the graphic design projects anymore (hand weakness, fatigue, pain, etc.).

Anyway, I know what you're going through, and it's annoying, and frustrating.

Btw, do you have trouble breathing when you bend over or are full after eating? That's the worst for me. And yeap, laying flat on my back makes me feel a bit short of breath.

ttys!
Nicky

Hi Nicky and Ally, I am so sorry for what you are going through. It sounds really rough. I am a bit weak today myself ( lung pain after that choke) but thought I would try to answer and make sense.

I can so totally relate to the singing though. Since junior school I 'lost' my voice. I used to have a great voice. The teacher would select me to read stories to the class or narrate the school play. I even did the end of year play in a hall for 100s without a microphone and my voice was crystal clear and strong. Then 'wham' - it all stopped. I was taking piano lessons at the time and part of that was an audio section and I could NOT sing or hum in tune. My voice would just give up on me. Examiners would just chuckle and rule aline through my page. It-was-so-frustrating!

And when I tried CPAP I had that exact same symptom but had never thought of the word to explain it. Suffocating - sounds exactly how it was. I lasted seconds cos ...I was suffocating.

Of course I was told this was cos I did not try hard enough, relax, use the correct mask ... etc etc

And I had head/neck weakness from junior school. I always had to sit at the desk and hold my head up. Never could hold my hand up for a teacher. I never really thought about why I couldn't and other kids could.

And what is it about anxiety and our symptoms ? Why don't they believe us ? I mean - I get a bit anxious now at the appts but that is only cos the Neuros are such jerks! And my whole next 6 months depend on what he does in those few mins of the appt. Which is usually nothing.

Anyway - just chipped in to say I can understand everything you are saying. Hang in there.