NeuroTalk Support Groups - Back to ER again

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- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - Back to ER again (https://www.neurotalk.org/myasthenia-gravis/143596-er.html)

So, I guess if you stop breathing in the middle of the night, your husband will be so glad he didn't take you in earlier. :rolleyes:

I do understand your situation and only you can decide what you can do or not. I hope you were exaggerating when you said "my husband will kill me."

All I can say is make sure you don't do anything in the meantime. Sometimes it takes an extreme situation for an MGer to "get it." Nothing is more important than getting help. Not a neuro's schedule, the time of day, a husband's unwillingness to help or the alignment of the planets.

Sorry, I am simply concerned that you might be ignoring what you need in deference to what everyone else needs.

Let us know how things go.

Annie

Well, I called my neuro at 2 am. He said go to the ER. He was upset the other ER hadn't admitted me and instructed me to go to another one. My husband drove me. I was there from 3 am until noon today. I had a lot of tests. At long last the neurologist came in. He said I "showed no manifestations of Myasthenia Gravis" and he completely understood why Hartford Hospital sent me home two days ago. He said they had no reason to admit me and they were sending me home. I told him my neuro wanted him to call him and he said "I'll send him a letter." I'd explained my neuro wanted me admitted to have my Mestinon dosage titrated and to get some IVIG.

I was thoroughly disgusted. He asked about my neuro, said he'd never heard of him and he thought he'd heard of everyone. I said he mostly treats Chronic Lyme but that he was brilliant and had diagnosed this and small fiber neuropathy in me. Oh boy, I opened the Chronic Lyme can of worms at a hospital that doesn't believe in it. Then a line of questioning about who diagnosed me with Chronic Lyme, when, all the doctor's I'd seen for it, if I'd been on IV antibiotics....if you aren't familiar with this, it is a HUGE political hotspot. I was at a hospital that has several of "anti Christ" doctors in the Chronic Lyme bloodbath.

So frankly, I think he was done with me as soon as he heard my neuro was treating me for Chronic Lyme. He refused to even call him.

They did do arterial blood gases but I have no idea what the results of any of my tests were, they just said everything was fine. The only thing I managed to get was my spirometry or Vital Capacity Function, which was 2.5. The Pulmonary Therapist said it was low. Evidently they didn't think so.

That's 3 ERs in a week. I think I'm done.

Tracy,

reading your post made me very sad.

I tried to think about it as a physician, and I thought that I really don't know what is going on. you have many different problems. all not very common and require a very caring and ready to think out of the box physician that will be ready to put everything together. I have very sparse information so could clearly not do that. At the most I could give you emotional support and suggest what I have suggested and could be right or wrong in what I say.

I then read it as a patient who has had similar experiences. who has encountered the more arrogant members of my profession. those who knew they have a better insight then me into my illness. those that knew I could not have a "real" illness. those who thought that what they have not seen, read about or understand could not exist. those who despite piling evidence of objective tests, kept on thinking what they thought.

even, recently, I had a very "nice" encounter with a young and enthusiastic neurologist, who had no doubt that I have severe generalized MG requiring treatment and knew exactly how he should treat me. all this was until he realized that I was correct when I told him that I have a very rare and unusual form of this illness, and unusual responses to commonly used treatments. my "theories" regarding the cause of this, did not interest him at all. he knew that as he has never seen something like that, it could not exist. he knew it was impossible for someone to go into acute respiratory failure in such a way. so it just couldn't be.

modern medicine has unfortunately become a conglomerate of Procrustean beds in which you either fit or you are forced to fit. If you have a rare variant of MG then you have to make it be as it should, if you want to be taken seriously and receive even proper supportive treatment.

the other option is to gradually find those physicians that are capable of truly understanding the limitations of medicine, and knowing that what they have not seen or has not been described (yet) in the medical literature, does exist. those who are curious enough to try and understand the seemingly "unexplained", and there are physicians like that. (sounds like your neuorlogist may be one of them, and I can now understand why you stick with him and why he was not more assertive with the ER docs).

you need help and I am sure you will eventually get it, but you have to keep on trusting yourself, (which is very hard when you are made to doubt yourself time and again). you also need to discuss what has happened with your neurologist and explain to him that going to the ER is not a possible solution as it just leads to more distress and nothing good comes out of it.

alice

Tracy, I hardly know what to say. I am again sorry that you were treated poorly.

No matter how badly a doctor behaves, I don't believe they deserve the title of an "anti-Christ" doctor, whatever that means.

I do know there are many doctors who don't "believe" in Lyme disease. Maybe "anti-Lyme" doctor is more appropriate. I still don't like labels because that's how you got to be treated the way you were.

Prejudice is everywhere, unfortunately. It has no place in medicine. Only logic, facts and doing everything to help a patient should come into play. It is obvious that this guy is one of those doctors who is arrogant. Simply because he doesn't "know" your neuro doesn't mean your neuro is somehow bad, which I believe he was implying. Sounds like projection to me. ;) And it also sounds like bullying. The old "We're better than you" or better than everyone else BS.

Please get the copy of the arterial blood gas report and anything else that was done, including the doctor's report. The ABG may not be "fine." I don't think you can trust what the doctor told you, only what tests were done.

Did they even do a clinical exam? A thorough one?

And it sounds a bit like all this guy was doing was backing up the other doctor's decision about not admitting you instead of thinking on his own. They do this in order to avoid lawsuits. It's stupid, childish and ridiculous, not to mention not helpful, but that's what doctors are doing these days. Back each other up at all costs - unless the doctor is outside of the "doctor gang" as your neuro is. That kind of behavior used to take much longer to show it's ugly head. Now you have ONE doctor or ER hop and they go straight to it, I guess.

The only thing that concerns me, and I'm sure the only thing that concerns you, is getting better. Maybe that will only come with help from your current neuro. Like trying Cellcept, plus IVIG plus Mestinon.

If you get to the point of not being able to breathe in or out at all and can't move, dial 911. You get far more serious attention when you do it that way instead of having someone drive you. And it's not as dangerous.

I'm truly sorry you are in such bad shape and no one is doing enough. But since you have such a good neuro, I will bet you guys can figure out what you can do to get better. At this point, it may take you months to recover. The longer someone goes undiagnosed with MG, the longer it can take to get better. The immune system is like that.

Hang in there. I'm trying really hard not to go berserk. You don't have the energy for that anyway. I've been where you are and it's almost too much for me to deal with.

:hug:
Annie

Tracy, I'm sorry you have to go through all this.

Tracy, I'm so sorry for all that you are going through. It might be wise for you to make an appointment to sit down and talk with your neuro about what you have been dealing with. You both need to draw up a plan of action for the future. I'm not sure if it would be possible or not, but maybe he could get in touch with one or more ER's in your area and explain what your needs are.

Good luck with every thing.

Quote:

Originally Posted by Tracy9 (Post 737592)

NO I'm not on my way, I think my husband will kill me if I ask him to take me. I should have called the damned neurologist before it got too late. I have IVIG Mon and Tues so it's just one more day to get through until that....I guess I can call neuro but it's almost midnight.

Is your husband in denial of your condition? I have read some great articles in the MG newsletter that helps the caregiver have a better insight into the condition of an MGer. My husband is very good and understands. My daughter on the other hand just doesn't understand why someone she has heard of with MG can jump over the moon but mom can't go marathon shopping. She is 34 and a mother of 2. She still thinks mom is bullet proof.

Tracy, as I struggle with seeing the doctor this week about the myositis and generally worse state your story sickens me in its blasted reality. I have been in this place. To be at a count of 10 and sent home is malpractice. A count of 10 to a pulmo or neuro who knows this test means you should be in the ICU. You were horribly mistreated.

I am sending you love and good thoughts. I have only read your post as my eyes and all are keeping me from really being online as usual. I care very much that you get the help you need. I wish I could send a good doc to you like my pulmo tho even he as good and senior as he is doesnt get the counting test. I have only has ONE student who knew this test and did it the day I was admitted for a myasthenic crisis. I made it to 16 and I was being admitted by that neuro in part because I could barely talk because chest muscles that weak.

I understand and will send a prayer to 2.

Annie59

Quote:

Originally Posted by Tracy9 (Post 737280)

Really sick; can't get out of bed, move, sleeping all the time. Missed my appt with neuro yesterday becuase medical taxi computer system went down and they lost all thier appts. Coudln't freaking believe it. Called him and told him how bad off I was, he sent me to hospital. CAlled ambulance, heart rate was 140 when ambulance got there and O2 sats were low. Hospital not too helpful but at least this one herad of the disease.

They did spirometry? kind of pulmonary test, just that one, and sent me home based solely on that. They said it's a good test and can predict if you are going to crash or not. Whole time in ER I couldn't walk unassisted, couldn't get my shirt off on my own for johnnie, etc. They did not do any blood gases. Some blood work but no idea what, urine test. Had me count only got to ten. Could not squeeze fingers well, etc. When they d/c me they told me to go to waiting room well it was a loooong walk. I had no idea. I thought I was going to collapse. My legs were full on shaking, kept falling into wall, wobbling, almost in tears, thought I'd just sit on the floor, long hall and no one around as it was 3 am. When I got near the end no one offered me help; they must have thought I was a drunk. It took me forever to reach the smelly couch in the waiting room. I thought, this is my LOWEST POINT EVER. Not one person offered me assistance though clearly I could barely walk.

The ER gave me a month supply of Mestinon, 3 times a day. Now if it helps you in the short run, do you take it before bed? What would be the benefit of taking it while you are sleeping? I took one before bed and two today and no improvement at all. I am TOASTED. I can't stay awake, still every part of my body is extremely weak beyond belief and all I want to do is sleep. I don't have the strength to open a water bottle or lift my laptop.

Is it every 8 hours if 3 times a day? Or 3 times throughout your waking hours? I have to reschedule with neuro but also got an appt with MDA clinic ready to be scheduled now, I think. I think my neuro is sending them all his records so I'll be good to go. He is moving to CA so I need to find all new providers, and it looks like a good place at New Britain Specialty Hospital with a whole MG clinic, 2 docs and services there.

I am so discouraged that the ERs are clueless. I feel unsafe and hopeless that I have nowhere to turn when in bad shape. The ambulance gave me oxygen and it helped IMMENSELY. I wish I had that at home. I asked for it in the ER and they never got around to giving it to me. Does it help any of you? I wonder if I can get that at home. What a huge help that was.

No one in the ambulance had ever heard of MG, neuro in the hospital had but they said if they admitted me all they could do was give me a dose of IVIG and that was it. They said once I just rested the weakness would resolve. What? All I do is rest. It doesn't resolve with rest at all!!! What is wrong with me? I'm always weak and can't even get up alone. I have IVIG Mon and Tues but we are expecting another huge storm Tuesday. I missed it this week because I was far too weak to travel to get there. That sucks, I never ever miss IVIG.

This is scary....no one gets it. I even brought in an article on MG that Annie posted and they all read it and said it was very helpful.

So that's what's up. I'm completely weak today, in pain, exhausted. I can count to ten. Need to call neuro and reschedule on Monday. I was up all night in ER so slept all day and I've been ready to go back to sleep ever since I woke up. Any help about the medication or insight would be much appreciated.

OH thank you so much everyone. I have an appointment with my neuro on Monday, and have put in for an appt with an MDA clinic. They now have all my records and I'm just waiting for my turn. Unfortunately my neuro is moving to CA.

My husband and I are not in the best place. He also has Lyme Disease, pretty bad chronic neurological, and is in total denial. He also has horrific seasonal affective disorder, having spent his whole life except the last 12 years in California. He is miserable, angry, and has no compassion at all for the 6 1/2 years I've been ill and not at all the go getter, thin, beautiful woman he married. He does no parenting and I can't so we fight all the time about the simple things, like get our son to bed, feed him, get him to school, it is a full on struggle to get him to do ANYTHING. HE is slipping further and further with a Lyme relapse, now sleeping ALL DAY. But he goes into fierce denial to the point of a power struggle and refuses to get treatment. I'm ready to draw up a schedule and if he refuses to agree to it, I'm ready to ask him to move back to CA with his mother. He is a non stop, constant source of extreme stress to me. He drops me off at ERS and then goes home and goes to sleep with no phone in the room and leaves me sitting waiting for HOURS until he might wake up and remember I'm at the ER. I cannot take it anymore.

Good Heavens Tracy that is horrible!!. The university I go to is this same way about lyme disease. A DHS worker I had at one point had a daughter who had been getting worse in a psychiatric way and pretty severe. Then a doc elsewhere finally tested her and she had lyme and when she was treated all the psych symptoms got better. They were all from the lyme. So much politics in medicine.

I havent been reading much as I have been sicker but I hope you are more stable tho this message didnt sound good at all. I am worried about you.

About you husband leaving you off at ER and going.....At this point for your health it may be better if you are appart. There is a simplicity that comes when you are the only one in charge tho if you go to ER do you have backup for the kids. I spent most of my life divorced and raised my second from infancy. My daughter left me at ER 2 times last year. She is a mom and her youngest was a baby so I felt there was no choice. It is a lousy place to be alone.

Annie59:hug:

Quote:

Originally Posted by Tracy9 (Post 737785)