,My Dad was diagnosed with Myasthenia Gravis in 1995 following the removal of a thymoma. He has maintained a relatively normal lifestyle with the help of IVIG treatments (used to be more often than now), mestinon and a few plasmapheresis treatments over the years. He is able to drive, get around the house without my Moms help and go places. However, he does keep a wheelchair in the car and uses it often as a walker and then seated if out for longer periods, needs our assistance when getting up from low seated positions. He has trouble sleeping or staying asleep. He has been getting out of the house less and less over the last year.

Beginning several weeks ago, he started feeling sick. He wasn’t able to sleep at all. Had trouble catching his breath and was cold. My Dad and I talk every day and he started to fall asleep on the phone with me; very unusual for him. When I spoke with him on Valentine’s Day morning, he sounded almost drunk. I called his Neurologist and they said we should take him to the Emergency Room ASAP. Unfortunately, the neurologist my Dad has been seeing for over 20 years had a medical emergency of his own and is out until May.

Now, after almost 4 weeks in the ICU (2 weeks at the hospital ICU and 2 weeks at a long term ICU), we know the start of the problem was MRSA (staph) infection and Pneumonia. He has been intubated since February 15th; first in his mouth, now though a trach so he is unable to talk. He is now on a setting on the vent called 'SIMV', next step we are told will be CPAP. He is also receiving kidney dialysis (never received before this time of being sick) today for the 6th time. He usually takes 30mg of Mestinon every 4 hours of so at home. Because they think he is in crisis, the Neurologist we were assigned, raised his dosage of Mestinon to 60mg. Dad was very, very weak and could not move his arms at all up until about a week ago. Now, he is able to slowly move his arms, turn his head, and squeeze our hands. He started shaking quite a bit about 4 days ago and we thought maybe he is having a overdose of mestinon. The neurologist lowered the dosage yesterday to 30mg every 6 hours.

He also has a blood clot in his right leg. They have to take him to another hospital to put in a filter tomorrow.

My Mom, brother, sister and I as well as the rest of our family are very concerned. Also, because it’s almost impossible to communicate with him, we just don’t know how things are going. We don’t know these doctors and although we feel like they are doing a good job for the most part, they don’t even really know what is going on.

I am looking for any advice or to hear from someone that has been in a similar situation.

Thank you so much.

I am sorry to hear about your father's situation.

30mg of mestinon is a very, very low dose (a starter dose or if someone doesn't tolerate it well due to GI symptoms) and mestinon is used for MG symptoms, NOT treatment of MG. A usual dose is 60mg every 4 hrs. People can even go as high as 120mg every 4hrs. He may just be shaking from being so weak and trying to use a muscle that has no strength. Truly, mestinon is not going to be the big concern here but lowering his dose lower than he takes at home is not a good idea.

He needs MG treatment if he is in MG crisis. And pneumonia is very serious for MG. Since he responded well to plamapheresis in the past, have they considered doing another exchange for him? There is also IVIG. That is a batch of other people good antibodies that they infuse. I don't understand if they have not done any treatment for MG while he has been in hospital.

Since he is able to squeeze your hands, perhaps he could communicate by writing??

Wishing you all well!!

My heart goes out to you in this difficult time. Can you request a consult with an MG specialist? Are the current neurologists treating him, specialist in MG? Having a neuro experienced in MG is very important.

I think art chick is right that he needs MG treatment. Mestinon only temporarily relieve the symptoms. I take 90 mg 4 times a day and 180 time span at night and they are considering upping my dose because of increased weakness. And I can still walk and talk.

Here is a list of doctors associated with the MG foundation of America, maybe there is one in your area.
http://www.myasthenia.org/LinkClick....o%3d&tabid=306

ALso try to contact a teaching hospital in a local major city and ask for a referral to a MG or neural muscular specialist.

Please let us know how things go. A fellow MGer in trouble hits very close to home for us.

My thoughts and prayers are with you and your family
kathie

Thank you, art chick, for the quick response,

They did one plasmapheresis treatment at the hospital and 2 IVIG treatments. Because of hospital rules/insurance, we could not stay in the ICU any longer. He had to be moved to a long term care Hospital and only a few doctors even visit this hospital. Our choice of neurologists is very slim. We were assigned one when we arrived. It is very frustrating because I don’t think he has a strong understanding of MG and other doctors that might have a better understanding don’t visit this hospital.

I am glad to know the mestinon information. I can remember times over the years Dad saying that he felt like his Mestinon dosage was too high or too low. It seems like it a fine line between the two. Do you know how long it takes to start feeling a difference after you are taking the right dosage?

Again, thank you so much for your help.

Thank you Kathie for the quick responce,

They did one plasmapheresis treatment at the hospital and 2 IVIG treatments. Because of hospital rules/insurance, we could not stay in the ICU any longer. He had to be moved to a long term care Hospital and only a few doctors even visit this hospital. Our choice of neurologists is very slim. We were assigned one when we arrived. It is very frustrating because I don’t think he has a strong understanding of MG and other doctors that might have a better understanding don’t visit this hospital.

I also appreciatte the information about the mestinon. It's so hard to know without speaking to him, so it helps SO much to hear from someone who knows more than myself.

Also, the listing of Dr's and idea about teaching hospitals was very thoughtful.

I will keep updates coming. Thanks again.

You are very welcome...I happen to be around today.

I am glad to hear they did treatment but I don't know the dose of IVIG. For me, they do 2 grams per kilogram. That is the max dose for people that have severe MG problems. This has kept me out of the hospital for 7 mo. Only problem is that I have had to have it every 2 weeks. You should find out how much they gave him. He may need more. I get mine at home. They should be able to set it up wherever you are since they have nursing care.

When mestinon is too high, he will likely have twitching or muscle cramps. For me, my eyelids twitch most but I twitch around my mouth or my arms sometimes. You can get increased salivation or diarrhea I hear people say. I never have any GI side effects and I take 120mg every 4 hr often but everyone is different. People work up to higher doses but if he is not used to it, it is better to have a dose he is comfortable w/ and focus on treatment.

The problem with working with mestinon is that it will mask what is truly happening with the disease because it will cover it up a little for 3-4 hrs at a time. It kicks in in 30-45 min if swallowed but is he getting it IV? Or are they crushing it and putting it in his mouth? Both of those ways, it would kick in much faster!

Often, the neuro will stop mestinon entirely during an MG crisis. So, I am not sure what to tell you on this one, especially since your dad cannot communicate with you and you are unsure of the expertise of the docs.

I hope this helps....