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.

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.


Annie

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

Attached Files

	MGCrisisExtubation.pdf (73.1 KB, 143 views)
	NonInvasiveVentilation.pdf (76.9 KB, 105 views)
	MGRespiratoryComplications.pdf (95.6 KB, 190 views)