Help; trouble breathing!!!
 

I'm really struggling. I've never had this before. I'm recently diagnosed (2 weeks ago) and not on any meds yet. I've had trouble all day, woke up a couple times in the night and couldn't breathe, even took a few seconds to get the breathing started again which was frightening.

All day today I was exhausted, hoarse, trouble talking, tongue wouldnt' work, legs so weak they were shaky, lost my balance to the point of falling over if I got out of bed.

By afternoon I was struggling to breathe. My chest feels really tight, and I can't breathe in very far at all. My neck and throat feel really tight too, like someone is sqeezing them. I feel like the air won't go any further than my windpipe.

I tried the breathing in deep and counting out loud and now I can only get as far as 8. Around 3 hours ago I could count to 12-15.

I do NOT want to go to the ER because I have IVIG again tomorrow (I'm on it for small fiber neuropathy) and I"m having a chest port put in Wednesday. I'm so scared they'd admit me and all that will be ruined, not to mention finishing up gift wrapping.

What should I do? Can I just go to sleep and ride this out?

Tracy, here's what I know about MG: it can decline drastically all at once. Trouble breathing is a true medical emergency when you have MG, because even if you are not in danger this second, you might suddenly get much worse. You sound like you're starting a crisis, which is life-threatening.

I think I'm the only one on-line right now--if the others were here, I know they would say the same thing. My neuro said it to me just the other day: don't fool around. He said if you have trouble breathing, call an ambulance.

I hope things work out for you. I understand your reluctance to go in, but this is an emergency. You can't ride this out.

Abby

I'm with Abby, mg can go bad very fast. Better to get to the ER and have them check you out. I understand how you feel, but breathing is something you can't play around with.
Kate

Tracy, Ditto on what these guys said. Don't be stupid. Dial 911. I am serious. You don't know how fast your MG will get worse. And it can get bad so quickly that you may not be able to even dial a phone let alone talk.

I'm not trying to scare you just trying to get you to realize that you are having all of the warning signs of an MG crisis. You CANNOT wait. You can die. Please dial 911 and get help tonight. They may need to do much more than IVIG, like plasmapheresis, oxygen, etc.

PLEASE, just do it. It doesn't matter if you are not "officially" diagnosed or being treated. In fact, some MGers have a crisis as their first experience with MG. They can diagnose you in the ER too.

Again, you HAVE TO go in. At this point, there is no other choice. No offense to anyone but screw the presents. The BEST present to your family will be the fact that you survive this. The faster you go in, the faster you go home. You are a newbie . . . you have to trust those of us who have had a crisis and truly understand this stuff.

:hug:
Annie

I add my voice the the ones who have already responded. Go to the ER now! I speak as someone who spent a weekend unable to sleep because of kidney stones who ended up on a vent because her lungs stopped working altogether! Fortunately, I was in the hospital by the time my lungs quit working so they were able to vent me. If it had happened at home, I wouldn't be here now. It can happen very quickly with MG and you can do nothing about it at home! Go in now!

no question!
 

unless you have ICU equipment at home, you should be in the hospital now.
I hope you are!

How are you doing? I hope you went to the hospital for treatment. I know it's scary and sometimes it's hard to know what to do, but it's better to be safe than sorry.

You'll find a bunch of caring folks around here. Things may be slow from time to time, but there's always someone around to offer advice or support. You just have to ask.

:grouphug:

tracy please get to the hospital asap! i hope you are getting helped and am praying for you :hug:

Tracy9, I hope you got help or improved greatly. A breathing test of 10 means a hosp is to put you in ICU. I have never been below 10 or at 10. I was at 16 when I was admitted by a neuro for suspected MG crisis. I could barely get a few words out and barely walk.

I am gonna send positive thoughts and liight and love your way today. I truly HATE ERs too because I have been treated so horribly but at the point you explained you need to be in the hosp for quick intervention. I am so sorry I was away and didnt see your message. :grouphug:

Annie59

Tracy~I was just wondering how you are doing? Did you end up going to the hospital? I'm guessing that that might be the case since we've not heard from you. Although, it's certainly a busy time of year and of course you don't owe us any explanation. Anyway, I hope you are feeling a lot better.

Tracy, I hope you are in good hands. When you can let us know how you are. We are thinking of you. Annie59:grouphug:

Bumping up for Tracy again. I hope you are okay. Please let us know when you can.

Annie

I'm okay, and I'm sorry I haven't been back to update. I managed to get through it and sleep it off. I've had a few other bad spells, almost went to ER last night as well. I just feel as though I'd be in the ER weekly if I went every time. Last night I laid on my side, relaxed, and eventually things calmed down.

I get really wiped out from IVIG and it seems after it I have trouble breathing for a couple days, though that was before. I think I get breathing trouble whenever I get really tired from talking or doing too much, which doesn't take much because I'm bedridden; but if I talk a lot at doc appts, etc forget it.

Thanks for caring. I'll be on here more.

Tracy, I highly recommend you at least call your doctor's office. Shortness of breath may be from MG but it may be from other things like a blood clot. Please see a doctor. I'm sorry you are still doing so poorly.

Annie

worsening with IVIG?
 

Do you happen to know which brand of IVIG you are receiving?

IVIGs are different in the way they are prepared and contain different additives. some contain sucrose, some glycine. some come as liquid and others are lyophilized (powder form) etc.

the side effects you are experiencing may be related to the additives and not the IVIG itself, and may improve with a different brand, that does not have the same additive.

Also, it sounds like you could benefit from a bipap. did you ever have formal respiratory tests/ sleep study?

I am on Gammunex now. Prior to that I was on Gammugard, and I had some pretty bad side effects.

I need to make an appt with my neurologist, who I see for Lyme disease. I have not seen him since I got his call that my MG test was positive.

Also, I did have a sleep study a few months back. I have not been back to the doctor for the follow up and to get the results. Another appt I need to make, along with a zillion others. These two are top priority though.

Your top priority is to call that neuro and get in on Monday. They always have same day appts. if it is urgent. It is urgent.

And whomever did the sleep study can fax it over to your neuro's office. It wouldn't take more than ten minutes. Your neuro needs that info.

Please, get this done right away.

Tracy,

I was suspecting you are on Gammunex. Gammunex has a very high concentration of glycine (and so does liquid Gammaguard). Glycine is a calcium chelator. this means that it leads to minor changes in the level of calcium in your blood. such changes that will not have any effect on normal, healthy people, or even most patients with neuromuscular disease, but some MG patients are extremely sensitive to those minor changes in calcium.

most neurologists are totally unaware of this problem, even though it was described in the medical literature. and I believe that 99/100 neurologists will attribute shortness of breath to "anxiety", so obviously will not report this unimportant side effect. (that is why it is very hard to tell what the true extent of this problem is).

the bottom line is that you may want to try and switch to an IVIG preparation that does not have glycine in it. although, all IVIGs contain additives that decrease the pH, so may have an adverse effect.

I also agree with Annie, that your respiratory evaluation should take first priority. This is not something to play with. If you have difficulty moving your arms or legs, it will not endanger your life, whereas a similar difficulty in your breathing muscles will. the only way to let them rest and recover is by using a respirator that will "breath" for you.

again, most neurologists have no understanding in the respiratory manifestations of MG. one "genius" recently wrote in a letter I received from him- "she was very unwell, but had no significant deterioration in her respiratory state, although required support by her bipap."

For me I totally agree that neuros dont understand breathing stuff and MG. If I could find one that did I'd be diagnosed! My great pulmo has now taken to cutting and pasting my pulm test results into his notes so they hopefully get that I am consistantly declining. He has tried to go into more and more detail including how the big change that occurred in a set of pulm tests that were done before and after a pose of mestinon.

None of this stopped the last neuro from telling my daughter I wasnt gonna stop breathing so dont worry AND that a person can have breathing problems from deconditioning her way of dissmissing my pulm results. I wonder if she even let the 2 students go over the pulm reports. They werent even aware of the neuro that admitted me for myasthenic crisis.

He put in his last report that I need a double blind tensilon test the double blind is cause he knows that they will tend to interpret a positive test in some dismissive way as they did in neuro-optho and it wont help me. I love this guy and he is a senior doc and is the director of the pulm lab. You would think that would get me diagnosed.

Annie59

hope you are oaky
 

hope your doing okay and as everyone says go to the hospital i even with mg and on meds 15 yrs ago tryed to ride it out NOPE CANT its not a surf board on the water to ride out the wave its our breathing and it needs help ASAP. and when i was first dx i could not breath well at bed time so doc put me on mestinon timespan- time released, aww breathing was better....

I hope Tracy did okay <3
 

I am brand new here and have had about the same symptoms in and out the last week. I often feel like sandbags are in my chest and someone is squeezing my throat from the inside. I have not yet been diagnosed, but my GP sent me to a pulomonary dr and I am getting a breathing test 11/9. It's gotten worse in the 2 weeks since my appt. She mentioned Myasthenia Gravis at the appt. I think if I get worse (it's 21 count right now, but would have been much less last night), I may go to the ER where she is a member.

My chest under the diaphragm often not only feels weighted (and I'm exhausted and yesterday unsteady), but also aches inside.

I was in hospital just over a year ago, because they thought it was my heart. When it wasn't, they just sent me home. It came and went, but I can see now that the first "event" was about 3 and 1/2 years ago. Stayed away, then more and more frequent "events" which are longer lasting and more severe have taken place. This has been a few months, now, and it's getting worse.

I'll be 55 11/5. I want to make it to that birthday :(

I'm going to try and find Tracy to be sure she did what you all pleaded with her to do.

(This is my first post - thank you all so much for this site and your voices!)