Choking again???
 

I have had such improvement in my swallowing and choking ever since I started IVIG. But suddenly, this last week or two, after my last IViG, I've regressed terribly! I'm choking constantly on food and water, I cannot make a seal around the glass so everything is dribbling right down both sides of my mouth like it used to over the summer. I thought this symptom was gone. I am beginning to feel like this is a game of Whack a Mole...you get one thing under control and another pops up again, just like Chronic Lyme Disease! I cannot believe this swallowing/choking/dribbling issue is back again! I didn't know anything about MG or that I had it over the summer when it was a big problem, but now that I do I can also say I can't really smile well either. What is up with this? I guess I really shouldn't complain until I get in to my neuro and get on Mestinon. With 2 feet of snow, this week was out again.

Tracy, You can try drinking out of a straw, it might help.

On the serious side, you are in trouble. IVIG does not always work for all people with MG, especially when they have gone so long without help.

I am going to say this again and then I'm going to stop beating my head against this same wall: Go to the ER. They are fully able to assess your situation and help you get what you need to be better.

I personally think you are in denial over this, as if you cannot fully accept how bad you are. Why else would you not go in? I understand being afraid of medical professionals but, at this point, you really need them.

I'm sorry for being so blunt but I honestly don't know what else to say to get you to take this seriously. You could die. You keep showing signs of your MG getting worse. It won't magically get better - you need help to make that happen. Even some Mestinon would help, which an ER can prescribe for you.

I do understand the constraints this horrid winter have thrown at many of us but, again, you don't have to wait for your neuro for help!

This isn't about "complaining," this is about getting help when you need it. MG gets worse if you don't get help.

I hope you will just take that leap of faith and go in.

Annie

I had a horrific choking incident last nite late. I am getting so bad by the end of the day now. It was my fault. I was stupidly sitting here with a drink of water just sitting in my mouth as I was thinking about something else!! How stupid!! And suddenly it was choking me as so much had gone down breathing passage. This was the first time I wasnt sure I was gonna recover.

I dont think I can do a straw. Last time I tried one it felt kinda like being smothered. I will try again as that has been some time ago.

Tracy, does the cold of winter help at all? Admittedly it takes getting used to and experimenting with but sleeping in a very cold room at nite makes me better in the winter. I was doing alot better till I started tanning again. Heat takes me down fast. Ihave found if I keep my feet warm and shoulders the rest of me can hanld the cold nites.

Annie59:(

holding your head down with your chin tucked in can significantly help. even if you are choking on your saliva. the worst thing to do is to hold your head up and try to talk when you are like that. and as you have learned you have to concentrate when you eat or drink. also, for some MGers water is for some reason much harder to swallow then a flavored drink. just adding some lemon juice can make the difference. when you feel that its becoming hard to talk or a bit hard to swallow your saliva totally avoid food or drink, and let the muscles of your pharynx rest for a few hours or as much as it takes. If its longer then that, make sure that your liquids are thickened. this makes swallowing easier and decreases the risk of aspirations. drinking from a straw is hard because it requires effort, but using a cup with a lid (like the ones toddlers use so their drink doesn't spill) is very helpful.

subcutaneous injections of neostigmine which act much faster then mestinon can also help.

Annie59, What I said to Tracy was NOT to be taken by you as a suggestion for choking on fluids!!! I guess I should've been more specific but I'm too worn out for lots of words. Ditto on what Alice said.

Why I suggested a straw was that, at least for me, it's easier to drink through a straw than to drink from a glass, at least for me. It uses less muscles. If anyone is a current choking risk, anything that goes in has to be rethought. Like thickened liquids. Like having a small sip of colder water in between bites of food. I like Alice's "sippy cup" idea.

Annie59, you need to start your own post when you have symptoms like this so people can see it and make suggestions. If you are choking like that, you need to dial 911. Stop being so stubborn and get some help, please.

Annie

Tracy, I think you at least need to give your neuro a call. If your problems seem severe go to the ER.

I don't know that much about IVIG, but I'm wondering if they can't change the dosage or brand they are giving you?

Hang in there.

AnnieB3 (thanks for pointing out you are two different Annies, I had not even made that connection)...really I have no fear of doctors at all. I see at least 3 a week.

I don't think I"m in denial but rather still uninformed since I have not even seen my neuro yet since I got this diagnosis, which is awful. He would not see me until I got my swallowing study, which I did now. I did see my PCP on Monday. He urged me to see my neuro ASAP. We just got 2 feet of snow. Between my IVIG schedule and all the other tests and appts I have been too exhausted to travel to him since I had the swallow study (and Christmas.) But now it is top priority. I have IVIG Monday but must try and get in next week.

I will call him tomorrow about the choking. On another board, they said the symptoms come and go and you never know what you will wake up with. Even though I haven't been choking much since IVIG it's not unusual for it to rear it's head again for no reason. On the other hand my breathing has been better which is why I have not rushed to the ER, but the choking thing is bad this week and last week, where it has been good for months. Well obviously not good but better, I wasn't drooling or choking like I am now.

Again I'm only on the IVIG by "accident", I'm on it for another condition. I'm on no treatment yet for MG.

So I'll call him tomorrow. I did not know choking was a reason to go to the ER, and since breathing was less labored this week I thought I was ok. I've been able to count to 11 or 12 and sometimes a little higher. But you will be happy to know, after being SO sick last week (IVIG serum reaction) and barely being able to move, when I went to my PCP appt on Monday I packed a bag for the ER and told my PCA if I felt short of breath I was going straight to the ER from PCP's office. It was my first time leaving the house since I'd have IVIG and felt like crap since, but surprisingly, I did just fine on the outing.

This week I've been much better as far as the extreme fatigue and weakness, flu like feeling has been. It's an IVIG serum reaction that I get sometimes. I don't know how to tie that in with the MG. It happens. It lasts 4-5 days. I've still been sleeping a lot and stayed in bed mostly but that's been the norm since my lyme doctor took me off the antibiotics to get a "baseline." I need to get back on them BADLY.

So I will call tomorrow. The other problem is I've been sleeping till 3 or 4 and by the time I feel awake the doctors are all closed. I'm trying to change that but here it is 4 am and I'm still awake. Insomnia is a major issue with Chronic Lyme and it sucks.

Tracy, Set an alarm! ;)

Resetting your circadian rhythm of sleep is possible. There is light therapy and so many other helpful ways to do that. If it were simply an insomnia issue, you wouldn't be able to sleep during the day! Check on "The Doctors" or "Dr. Oz" websites for helpful hints.

And if I'm repeating myself it's because I'm so preoccupied right now. Have you had your B12 checked? Even if it's so-called "normal," adding sublingual B12 will help to heal any peripheral nerves. I get mine at www.iherb.com because of their great pricing and service (have since 1999).

Choking that doesn't stop is an emergency. As is the inability to swallow. Or breathe. Or walk. :cool:

I hope someone helps you soon. It's silly to wait for Mestinon.

Annie

Annie my B 12 is always off the charts high.

I went to the ER finally. I was having trouble breathing and so weak I can barely move. Doctor said he knew nothing about MG, called a nearby major medical center. They instructed him to do pulmonary function tests on me. My negative breathing test where you breathe but nothing comes in was -30. He said something overall was 750, 4 times the amount for admission criteria. He gave me the option of being transferred to UMass and being admitted and started on MG treatment, or waiting until my appt with my neuro on Thurs. He said there was nothing to indicate there was any imminent crisis, so I said I'd wait until Thursday's appt.

I went home and slept 17 straight hours. I woke up, ate, computer for a bit but hard because hands and arms are so fatigued, then slept another 13 hours. I am so weak, I cannot move. I had IVIG today and I cancelled because I'm too weak to get up and get dressed and go for the cab ride to the hospital. I don't think I've ever been so weak. I think it must be the Lyme disease. I need to get back on my antibiotics. I feel like I'm slipping back into that "Lyme coma" where I could never make it to the doctor's, all I could do was stay in bed and sleep. My arms feel like they are breaking just from typing this. My husband has to feed me my pills into my mouth. A couple more days and I'll see my doctor. I dont' know how I'll make it there but I will. I am completely incapacitated. I can't make it up the stairs.

In the ER the doctor told me to squeeze his hands, my mind was tellling my hands to do it but my hands couldn't do it. That was strange. Now my hands are so sore from typing. I hate this. I ache everywhere. Ready to go back to sleep. Any thoughts????

Tracy, I am so damn sorry for what you went through. Nothing to indicate an MG crisis? Oh, yeah, there is.

That idiot may have been referring to your total lung capacity or vital capacity, which is not the "absolute" criteria they should be looking at. Obviously, your local hospital is in need of educating. A MIP of -30 is seriously low and that combined with the inability to squeeze someone's fingers is enough to be admitted to the ICU. And I mean immediately. They should also have done an arterial blood gas. Did they do an oximetry reading? BP?

When I went to urgent care because I wasn't doing well, I thought I was squeezing the doctor's hands really hard. I wasn't doing it at all. I got admitted to the hospital immediately.

There is no way to tell how quickly someone with MG will go downhill. You need to call your neuro's office and tell them how bad off you are. This is getting ridiculous and I'm scared for you.

DO NOT do anything but rest. Don't type, don't make food, nothing. I'm being very serious.

Ask your husband to print this off to take with you next time. I'm trying to find other useful articles for you. Specifically, look under "Management."

http://qjmed.oxfordjournals.org/content/102/2/97.full

https://wiki.umms.med.umich.edu/disp...sthenic+Crisis

http://journals.lww.com/smajournalon...risis_.24.aspx

http://onlinelibrary.wiley.com/doi/1...mus.20403/full

Post Graduate Medicine had a good article but they apparently took it off the web and you have to pay for it now.

You need to discuss oxygen and/or bi-pap with your neuro too. You need some help with breathing or you will go into a full blown crisis. As far as I'm concerned, you are in a severe exacerbation and can go downhill any time. Nope, don't have to be a doctor to call that one!

http://www.ncbi.nlm.nih.gov/pubmed/18195139

At the very least, this guy should've prescribed Mestinon for you. I cannot believe you haven't been given that yet. Your neuro can prescribe Mestinon over the damn phone in the MORNING by faxing it into your pharmacy. And I seriously think he personally has to admit you to the hospital, which he can do.

If anyone has any other info, please add it!

Tracy, This doctor was wrong. You should've been admitted to the ICU. I'm really worried about the condition you are in. You sound like I was during my crisis. Please, I know I already said this but don't do anything. I couldn't even shower for 2 weeks after mine. Gross but true. Be careful.

I hope you will get better soon but it won't happen without everyone helping.

:hug:
Annie

The PDF's are for both intubation and extubation, etc. ;)

Ok, wow, I had no idea -30 was bad. They did one other test where I blew out all I could into the thing, but I can't remember the results, 175 or 1.75 or something like that? I had no idea this was bad. I know I am very bad off. I haven't had a shower in over a week and as it is my husband has to help me. I can't move. I barely touch the computer, I sleep at least 14 hours, I am incapacitated. my breathing does feel better but I'm not getting out of bed much at all. I cannot walk alone but for a few steps. I have never been so weak in my life. It hurts to type. I can barely talk.

My neuro has no admitting priviledges anywhere. I see him on Thursday. The ER doc freely admitted he knew nothing about MG but he ran my test results by the major medical center and they advised him. My hubby called the MDA clinic today and they said they would call back with appt. I will look and see if that hospital has an ER, they have a whole MDA clinic there. I can only count to 8 now but don't know what to do. How do you know when you are in crisis? What happens? I told the ER doc about the counting thing and he said I was counting slowly. I count like 1,2,3,4,... He asked if I ever had a Tensilonn test and I said no, I had positive blood test for AChR. He said, but you never had a Tensilon test? Because his ONLY experience with MG was doing one of those for diagnosis. HE was nice and would have transferred me to UMASS but didnt really think it was needed. I don't even know what neuro is going to do Thurs.

Oh and I had to cancel my IVIG yesterday and today and I NEVER EVER do that; i was too sick to get dressed and get in the cab. I NEVER cancel IVIG.

Holy cow, those articles are amazing. I thought I posted a reponse but I don't see it. Anyway the last one I will print out and bring next time. I'm in bad shape, can't move out of bed. No bath in over a week. Missed IVIG yesterday and today, too weak to go. I never miss IVIG.

I can't remember what else I was going to say.

Well, Tracy, you know when you are in a crisis when you are as bad off as you are now. I didn't want to define it as a crisis because I didn't want to scare you. Not that you aren't already scared.

Your doctor's are supposed to know that too.

You couldn't squeeze that doctor's fingers. No muscle strength = a crisis.
Your MIP was -30. Below -40 is a crisis (usually).

As much as doctors want one, there is no "exact" algorithm for defining a crisis. What is one person's crisis is not another's. Yes, there are basic guidelines but each person is different.

Don't use counting as an example. Doctors are odd that way. Talk about not being able to do anything due to weakness, about not being able to breathe in or out. They are the ones who aren't doing what they should do, like arterial blood gases, FULL pulmonary function testing instead of bedside spirometry, overnight oximetery, etc.

Again, why no Mestinon prescription. That is something your neuro could've done today. Call them back and get one called in.

And a Tensilon test in your condition could make you worse. Duh, doctors.

How far away is the bigger hospital? How about an ambulance ride there? You need more help than the IVIG.

You have to look at your situation in very basic terms. If you don't get help, you could stop breathing and die. So I think it's time for help, no matter where you get it.

I am so sorry things are this bad. But don't give up hope! You are this bad because you've gone so long without sufficient treatment. Please don't wait for help.

Annie

And quit typing, okay?!!!! :) Just sit in a hospital bed and read, without holding what you're reading!

Oh yeah not sure about my BP but my heart rate was 115 and pulse ox was 97.

I showed everything to my husband and had him read it. He said I can wait until my doctor's appt on Thursday. He said he's seen me exactly like this for years (sick with Lyme.) I said this is different, I've never been so weak it hurt to type or I couldn't even get off the couch without you helping me.

He said the last thing I need is to go to some ICU and get a bunch more tests and things. He was irritated as hell he had to bring me to the ER the other night. I'd asked him to bring me the night before and he refused. When I got discharged from the ER he said "that was a waste of time."

He feels all I need is to get on the Mestonin. In other words, if it inconveniences him, he wants no part of it. He's sick of having a sick wife and he downplays everything. EVERYTHING. He read all those articles and all he picked out is that a crisis is precipated by a respitory infection, and i don't have one. If I had bronchitis or something it would be worth going to the hospital but since I don't it would be just another waste of time.

Plus he is always taking my cell phone so I never have a phone in reach to even try and call the doctor. And he is always out in the garage tinkering around so he can't even hear me when I call him for help.

You weren't the waste of time. The doctor wasted YOUR time.

And an MG crisis can be precipitated by ANYTHING, like stress.

If your husband wants to have a wife who feels better, he needs to pitch in, have your back and tell these doctors to help you. Just my opinion.

Do you have a "land line" in the house? Stay close to it.

Maybe your husband is in denial, like lots of people who know someone with MG are. Does he realize that you are in seriously bad shape right now? ER doctors don't all understand MG, especially because they read about one paragraph about it in school. It's hard for people to watch their loved one change due to illness. It can be a hard thing to overcome.

Your husband may need educating too. There must be an MG expert who can do some plain talk to get him to understand.

Again, I'm sorry about all this.

While your husband may be 'sick' of your sickness - he also sounds controlling (evidenced by your statement about the cell phone). I am really sorry you have to contend with this at all - but especially at a time when you are so vulnerable.

Oh, he is more self centered and forgetful. He doesn't take it away from me, he takes it use it because he can never find his, then misplaces mine. I do need a landline in my room. I have a Life Alert by my bed. Tomorrow is my appt with Dr. Weiss, 2 hours each way, and he is always running about 2 hours behind, then the appt is an hour....and I heard my husband making plans! He has no intention on going! I take a medical taxi, so he figures I'm all set. No forethought given to the fact I'll be so sick I will need help, no any interest in going and hearing what the doctor has to say about all this?

I'm so used to this, so used to lying in bed alone all the time.....but yes, stress is most definitely my MAJOR trigger. We are always fighting. For instance, we got my son a laptop for Christmas and it doesn't charge up. Ri ght away did all the paperwork to return it, He just had to label it and send it out. He hasn't done it yet. I have asked him EVERY DAY since Christmas to bring it to UPS. We are going to lose $600 any day now. It is like this with everything, meanwhile he putters around with his manly project of the day and never does the important things, no matter how small they are.

Sorry to go off on a rant.

Tracy, Do you mean Dr. Allan Weiss in St. Petersburg, FL?

UPS will come to your house to pick things up. So will Fed-Ex.

Fighting is so not good for MG. It's not good for anyone or anything. ;)

Controlling personalities do like to fight. And, if he is like that, they do it because they are insecure and don't like being wrong. It's more than that, they can't handle not being right. What they often do is "level" or "put down" everyone around them so they can feel good. I hope that's not the case for you.

I hope your appt. goes well. I do not like that you haven't gotten care since those antibody tests were run. IVIG alone is not enough for you, obviously. Let us know how it goes.

Annie

Tracy,

There are two things you need to understand:

1. your husband is like that because its hard for him as it is for you, but in a different way. it is very hard to have a spouse who is so ill, and not be able to do much, and constantly hear from physicians that there is no need to do much any how. at some point you do not know who and what to trust, and it gets into a vicious cycle in which the medical staff think you can't be that ill, if your husband is doing his own stuff and not fighting for you to receive better treatment, and your husband thinks you can't be that ill, if the medical staff who is so knowledgeable and obviously will not risk a patient's life is doing nothing. and each enforces the others opinion, with you stuck in the middle.

2. this is all wrong. from the way it sounds, you are very ill. you are on the verge of a crisis. your husband can't handle it, the medical staff are not knowledgeable about it. in fact they don't have a clue. when you see your neurologist make sure he understands the severity of your condition and that he consults a pulmonologist to do a full respiratory evaluation. even though you are very ill, tired and weak you have to be very assertive and make it clear that you are insisting on that. make sure he understands that you are ill and not "depressed" or other BS.

I have met very few neurologists who were ready to "admit" that I have had a crisis (in fact numerous). the pulmonologists were very cautious in their terminology and called it "respiratory compromise" or "acute respiratory failure". so the name doesn't really matter. the fact is that when you have significant respiratory muscle weakness anything can tip you over the edge from being able to ventilate properly to not being able to do so.
one WLE neurologist told my husband (who called him when I stopped breathing on the way to the airport and required respiratory support) that I will be fine and can safely fly home. and my husband, who was overwhelmed by this situation, just did what he said. fortunately I had my own respirator, and don't easily panic, as I do not want to even think what would have happened if I did not.

I am telling you all this, so that you will understand that most of them (including world leading experts) really don't know, and you have to find someone that does. it's hard and exhausting, but you have no choice, because like Annie says-your life depends on that. this is a rare illness, and having such severe respiratory symptoms is even more rare, so very few know how to evaluate and treat it. unfortunately, many think they do and give you false reassurance without understanding anything about it.

My doctor is Dr. Gerald Weiss in Norwalk, CT. He is my Lyme doctor and diagnosed me with small fiber neuropathy which is what I get the IVIG for. Now he just diagnosed me with MG. I have had no treatment for it except the IVIG incidentally, but last night he had the ER put me on Mestinon, 60 mg three times per day. My breathing is no better but my right arm seems stronger. That's it.