[whirlwind123]

Hi all.,
This is my third day on the mestinon., I know the neuro told me I would have more saliva, or something like that., well I have bad allergies., I take Zyrtec and singulair., sometimes if I am around alot of allergens I will get chest congestion and cough up phlegm ( sorry don't mean to be gross ) and it gets hard to exhale., kind of like asthma , but I have no problem only when I am around allergens. Since I had a cold about a month ago I have had this excess congestion., and it seems since I started the mestinon it has worsened., twice so far today I have had to cough up alot of phelgm., and I know it is not a myesthenic crisis as my breathing is not labored., it is like it always has been when I am around allergens., everything is blooming now., but it does seem worse since the mestinon.

Does any one else have this problem?

Also., please help, I get the CAT scan on Monday of the thymus gland., and I see the neuro Wednesday., I want to tell him about this chest congestion, because I think down the line., it might cause some confusion with the myasthenic crisis?

How could I differentiate this?

How does a crisis actually feel?

Thank you all so much

[AnnieB3]

Do you have an allergist or pulmonologist? If so, go see them!

I began Mestinon in 2-01. Two months later I had Asthma. I had been diagnosed the year before with bronchial hyperresponsiveness, which just means my lungs were relatively hypersensitive to allergens already.

http://www.mestinon.com/

Mestinon should be taken in caution with those who have asthma. You might already have bronchial hyperresponsiveness or undiagnosed asthma. That needs addressing RIGHT AWAY by either of those two kinds of doctors I mentioned above.

Do you have any wheezing?

Either of those doctors can also give you a peak flow meter. It shows how well you are breathing OUT. It's sort of a crude measurement but it can show if your MG is getting worse, if you aren't having asthma symtpoms. When in doubt about whether or not your MG breathing is getting worse, see a pulmonologist. A neurologist does not have the "tools" or breathing equipment to test your breathing. A pulmonologist can fax over your results to your neuro and then you can get extra care if you need it.

Info on asthma:

http://www.nationaljewish.org/health...hma/index.aspx
http://www.radix.net/~mwg/whatis0.html

Again, your neuro isn't the one to be differentiating between asthma and MG. Asthma is an obstructive breathing process. MG is a restrictive breathing process. A pulmonologist can tell the difference.

You can usually tell if you are having an MG exacerbation or an MG crisis. You will feel more tired. You may have more trouble breathing in. You may have trouble walking or lifting things or gripping anything or swallowing or talking. If you are having problems with all of those things at once, you need to seek out help right away!!!

Any problems with breathing or swallowing are emergencies. And I mean dial 911 emergencies. There is no way to tell how quickly you can go downhill, especially in the summer.

How does a crisis feel? Like none of your muscles will work. I went in to Urgent care because my oxygen stats (I have a Nonin Sportstat finger oximeter) were staying at 94%. The doc there said I couldn't squeeze his fingers - which I did not believe! By the time I got to the hospital, I couldn't open my eyes, I could not take any deep breaths in, I was overall very weak. I couldn't lift my limbs more than an inch or two for their neuro exam. My oxygen stats were dipping into the 70's by the time I got into a hospital bed.

BTW, if you ever have an MG crisis, you need to be in the ICU (intensive care unit). They need to constantlly monitor your breathing and it's the only place they can do that. Neuro units usually don't have that kind of equipment.

Now, take a deep breath! I know, you'll probably cough after that. Get yourself some more help from either an allergist or pulmonologist. I actually recommend a pulmonologist because you really need them to assess your breathing. They may want to do a methylcoline challenge test to see if you have asthma or bronchial hyperresponsiveness. I know, who wants more tests done! But a pulmonologist is an MG "team" member.

Whatever you do, seek out help if you get worse.

Annie

[Maxwell'sMom]

Hi, I have Asthma, and I have an inhaler, and I take mestinon. The only side effect I have from mestinon, is diarrhea, severe diarrhea, so they wrote a script for me to help with it.
I'm not entirely sure a person can tell if they are having a severe allergy, or asthma attack, virsus it being a crisis.
When you feel your breathing deteriorating, call your doctor ASAP.
Having said that, I will tell you that being put on a ventilator wasn't as bad as my imagination thought it would be.

When I'm going down, this is what happens to me. Days before, I'll start feeling weaker than usual, Mild breathlessness and then I start choking more, and my breathing is much more labored. (now, I do have Ph, Heart issues, and Asthma) But it really doesn't matter. Calling the doctor, or going directly to the ER is what you should do.

I've had times, there was no warning, and it felt like someone shut my breathing off, for just a couple of seconds. I hate that when it happens. But it has, and it's scary. I then will go up and lay down with the bi-pap machine on for an hour or so.
It has saved me many times.

I just heard today that there is something other than Mestinon that can be taken. It's called Mytelase. I'm going to ask my neuro about it. Maybe you should as well.
best of wishes
Love Lizzie

[whirlwind123]

Annie ,
I do not have wheezing , it just feels like since I started the mestinon., the congestion is so much increased, my chest feels heavy and my neck/throat feels tight., I know it is the mucous lining the chest and throat, and then it will start to choke me and I cough up thick phlegm. With every dosage it increases, and then it becomes hard for me to exhale what I breath in. The mestinon hasn't seemed to do much for the ocular it is the same. I get my CT scan Monday and see the neuro on Wednesday. I see my GP on the 6th of May., so I will
call him to see him earlier to discuss pulmonologist, in the meantime till I see the neuro on wednesday and tell him about the allergic asthma if it gets worse I don't know maybe I will have to quit the mestinon till I see him, or talk with my GP I am taking singulair for allergies but it helps with asthma too, I will see what happens. But I am definately going to get help for this , like you said a pulmonologist is the best. I think the problem is right now the pollen counts are so high and my allergies are thru the sky, so I am full of congestion already.
Again thanks.

Originally Posted by AnnieB3

Do you have an allergist or pulmonologist? If so, go see them!

I began Mestinon in 2-01. Two months later I had Asthma. I had been diagnosed the year before with bronchial hyperresponsiveness, which just means my lungs were relatively hypersensitive to allergens already.

http://www.mestinon.com/

Mestinon should be taken in caution with those who have asthma. You might already have bronchial hyperresponsiveness or undiagnosed asthma. That needs addressing RIGHT AWAY by either of those two kinds of doctors I mentioned above.

Do you have any wheezing?

Either of those doctors can also give you a peak flow meter. It shows how well you are breathing OUT. It's sort of a crude measurement but it can show if your MG is getting worse, if you aren't having asthma symtpoms. When in doubt about whether or not your MG breathing is getting worse, see a pulmonologist. A neurologist does not have the "tools" or breathing equipment to test your breathing. A pulmonologist can fax over your results to your neuro and then you can get extra care if you need it.

Info on asthma:

http://www.nationaljewish.org/health...hma/index.aspx
http://www.radix.net/~mwg/whatis0.html

Again, your neuro isn't the one to be differentiating between asthma and MG. Asthma is an obstructive breathing process. MG is a restrictive breathing process. A pulmonologist can tell the difference.

You can usually tell if you are having an MG exacerbation or an MG crisis. You will feel more tired. You may have more trouble breathing in. You may have trouble walking or lifting things or gripping anything or swallowing or talking. If you are having problems with all of those things at once, you need to seek out help right away!!!

Any problems with breathing or swallowing are emergencies. And I mean dial 911 emergencies. There is no way to tell how quickly you can go downhill, especially in the summer.

How does a crisis feel? Like none of your muscles will work. I went in to Urgent care because my oxygen stats (I have a Nonin Sportstat finger oximeter) were staying at 94%. The doc there said I couldn't squeeze his fingers - which I did not believe! By the time I got to the hospital, I couldn't open my eyes, I could not take any deep breaths in, I was overall very weak. I couldn't lift my limbs more than an inch or two for their neuro exam. My oxygen stats were dipping into the 70's by the time I got into a hospital bed.

BTW, if you ever have an MG crisis, you need to be in the ICU (intensive care unit). They need to constantlly monitor your breathing and it's the only place they can do that. Neuro units usually don't have that kind of equipment.

Now, take a deep breath! I know, you'll probably cough after that. Get yourself some more help from either an allergist or pulmonologist. I actually recommend a pulmonologist because you really need them to assess your breathing. They may want to do a methylcoline challenge test to see if you have asthma or bronchial hyperresponsiveness. I know, who wants more tests done! But a pulmonologist is an MG "team" member.

Whatever you do, seek out help if you get worse.

Annie

[leaningin]

I have just gotten out of the ICU after having a Myasthenic Crisis - my first. I too used to wonder how I would know if I was in crisis. Let me tell you, the feeling is quite distinct and clear. For me this bout with MG started with the usual droopy eye and overall fatigue. But it progressed until one side of my face was completely non-functioning. I looked like I had had a stroke. Then I was unable to hold my head up and lastly I was unable to chew. At that point I went to the ER and was admitted to ICU and started on IVIG. I did not get to the point of respiratory failure but they tell me I was close. The breathing difficulty I experienced was not like the flu or pneumonia (both of which I have previously had). It is more a weakness in the ribcage and the diaphramatic muscles. It just feels like there is an elephant on your chest and it is hard to move the air through your lungs. If I had it to do over again, I would have gone to the ER sooner. I hope this helps.

Originally Posted by whirlwind123

Hi all.,
This is my third day on the mestinon., I know the neuro told me I would have more saliva, or something like that., well I have bad allergies., I take Zyrtec and singulair., sometimes if I am around alot of allergens I will get chest congestion and cough up phlegm ( sorry don't mean to be gross ) and it gets hard to exhale., kind of like asthma , but I have no problem only when I am around allergens. Since I had a cold about a month ago I have had this excess congestion., and it seems since I started the mestinon it has worsened., twice so far today I have had to cough up alot of phelgm., and I know it is not a myesthenic crisis as my breathing is not labored., it is like it always has been when I am around allergens., everything is blooming now., but it does seem worse since the mestinon.

Does any one else have this problem?

Also., please help, I get the CAT scan on Monday of the thymus gland., and I see the neuro Wednesday., I want to tell him about this chest congestion, because I think down the line., it might cause some confusion with the myasthenic crisis?

How could I differentiate this?

How does a crisis actually feel?

Thank you all so much

[erinhermes]

Let me tell you, you will KNOW when or if you have one! It stinks! You will not be able to breathe, swallow, walk, talk, etc.

I was stupid and too stubborn to go in after my first crisis, and had to have a few more before I finally agreed to go to the hosp - ICU for 8 days!

You will feel weaker than you ever have before. It is a feeling you never want to experience - ever. However, if you do, the docs will prolly give you IV IG or the plasma exchange - it will make all of the difference in the world. Trust me on that!

I was started on Pred while there - as well as IV IG - by the 2nd day I felt so good I cried! I was still very weak, but was able to stand, walk, talk, BREATHE on my own.

I was able to keep my eyes open. It was truly a miracle!

By the 3rd day, I was able to EAT - really EAT for the first time in a month - let me tell you it was fabulous! I gorged!

Hope this helps!

Erin