I went to bed with worse breathing cause I had calls yesterday that I should have put a stop to. My moms nursing home called to follow up on a call I made based on an email from my brother who was worried. It is amazing that one phone call couldnt recify the issue. The first call yesterday was telling me what happened didnt in detail. Frustrating.

This morn I had to get up to pee. Just that walking made me worse. I tried to lay down for more sleep but couldnt stay laying down. I got up to sit at couch and watch some TV but again that moving around made me worse. I wanted a big dose of mestinon but with whats going on in my stomach now I cant tolerate adequate doses for worse breathing without a big meal and a hydrocodone in me to keep me gastro affects from starting in the diareah and stomach pain.

I talked to my pharmacist yesterday about what my pcp suggested for the gastro affects(Questran). He said it was a bad idea. It didnt sound like a good fit to me either tho I wanted to ask someone who knew alot more. My pcp has been a poor listener recently. I think he is burned out. My pharma gave me two other suggestions. Thank Heaven!

I started crying this morn. How crazy is that. Crying when you can hardly breath. It doesnt work and can make it worse. I was in so much pain yesterday now this breathing thing is just more than I can handle right now. And today my home aid is coming ......and she is the new one so I have no idea how to do that and the fact that I should not talk.

I ended up in a better place to some degree yesterday. Planned to take advantage of the pieces of remission like symptoms that the bitter cold has brought on. This feels like a slap back down.

Annie59

Annie, I'm sorry that you are in such a bad place now. I know how scary the not being able to breathe feeling is!!

It's good to have an ongoing relationship with a pharmacist. I have one who is very knowledgeable. Hopefully you can find the right combination of medicine to help your breathing w/out causing too many of the GI side effects. I do think, in some cases, we have to decide which symptom is the worst (and most serious) then treat it while dealing with the side effects.

Hang in there!

Annie, Do you realize that hydrocodone can make MG much worse? When was the last time you took one? Does the formulation you have include acetaminophen? Hydrocodone can cause nausea and vomiting too. Are you sure it's the Mestinon and not this drug?

Hydrocodone can severely depress breathing in a person with MG.

I think it's time for you to get an immediate appointment with your primary physician and/or your pulmonologist.

Where is your pain coming from? MG doesn't cause primary pain. Do you have another condition that is causing you pain? Have you been checked out for lupus? I'm a bit puzzled by all of this. Medicating for one thing that makes something else worse, especially since it could make you stop breathing, is a pretty dangerous way to doctor. I hope you will bring all of this up to your doctors right away.

Annie

I wish this was a minor case of diareah that mesti causes but it is full blown explosive, intensely painful crampiing diareah. I didnt make it to the bath room once and it went all over and I am too weak to clean that kind of mess up. I almost fainted on the toilet too more than once because my bowels were taking so long to calm down and I couldnt risk going to another room and had gotten weaker. Some mild to moderate diareah would mean I would just increase fluids and do the best but unfortunately that is not the case. My hydrocodone can counter the mestinon if I time it carefully and take very tiny doses, but I shouldnt have to use it for that. Today even that isnt allowing me to take enough.

I emailed my daughter about needing to think seriously about seeing this local 'rogue' neuro. His name is Dr Risk. He believes in and treats Chronic Fatigue which isnt popular around here. Also he is far more honest and open-minded than alot of neuros. The downside is my pcp hates him so it is possible I could lose my pcp.

Annie

Annie, I'm so sorry you continue to struggle. I really don't have any special medical advice to offer. All I can say is keep the faith and stay strong. I'm sure you will find the right doctors and the relief you're seeking.

Keeping you in my thoughts and prayers,

Rachel

Hydrocodone can CAUSE diarrhea. Mestinon can cause diarrhea.

Annie, You need to call your primary doctor or call 911. Someone needs to help you. I believe you are in need of medical attention right away. Please get some help from medical professionals.

When you have diarrhea, you can lose a lot of electrolytes. Seriously, please go in to urgent care or the ER and get them to test your electrolytes and check you over. You need medical advice that none of us can give you here.

Annie

I want to AnnieB3, I just dont know which doctor. I noted in the post about the antidiareal that I emailed my daughter about this other local neuro (Dr Risk). I think it may be time to bring him in. I just dont want to lose my pcp.

Yes I think I did take too much hydrocod this morn considering what is going on. I have backed off on it. But I was having trouble breathing before that and it is still worse from getting up and down and talking a slight bit to the homemaker. I mostly did all talking thru paper with her. That shows how worried I am as for me to not talk it is huge. I am alone so very much when some one is here for any reason I just dont remember not to and the urge to talk it so great.

The hydocod is Tylenol based and I have taken it for a number of years with no problem. I have never had nausea or vomit with hydoco. The stimulation that the mestinon causes in my bowel could be completely stopped in smaller doses by 2 hydrocodone but that wouldnt leave me enough for what I need it for nor would that be poosible from a safety standpoint as you stated because 2 would weaken me and by then end of the day I would be over the level of safety for acetominefen.

I can go into the pain issues later. It is a story I dont have the werewithall to type or think thru. The short version is that it started as one thing and went into another. The last 2 doses were 1:40 I took 1/2 tablet and 2:05pm I took the other 1/2. It is 3:11pm now and I am hoping the tiny dose of mestinon I took at 2:08 will help me breath better with out bowel issues since I only took 1/2 before I took it.

I feel trapped by bad docs. The last time I was this bad I called my pulmo and he said we better call the neuro. My current neuro said I could come but it would take her time to set it up and that would mean getting me pulmonary testing (to prove to her anything really exsited). She left me with she thoguth maybe that could happen in a day or 2. That is how seriously she takes my health. I called my pulmo back and said if I come in and his tests dont highly demostrate what she wants I will be alot worse from the exhaustion of the tests and worse with no treatment being offered.

I dont know what to do honestly. My daughters are both so detached( from fear about my health) to different degrees and they have kids and problems of their own so there is noone to force the issue. Unless I go into crisis which I have know maybe the only thing that gets me treated tho given my negative testing that may not even work.

Annie

Annie, Right now, it doesn't matter which doctor. You NEED to go to the ER to be checked out. Doctors are obligated by law to help you, so simply go in. If you feel so bad that you can't drive and can't get a ride, call 911. Please don't ignore what is going on with your health. We can't help you here but to give you support. Okay? Please go in.

And you may be having a drug/drug interaction, which can happen too. It may not only be the Mestinon alone.

Annie