Myasthenia gravis - this will be fun...

[selmerfan]

Well, I got home from the hospital on Tuesday after 5 days as a patient. I went in with double vision, facial weakness, couldn't keep eyelids open, dizzy, etc. Thought it was botulism from a bad batch of sauerkraut at first, but the mice that the MN Dept. of Health shot up with my serum didn't die and the sauerkraut had a pH of 4.3. It tasted terrible, but wasn't deadly. But it got me a quick diagnosis on a disease that is tough to pin down. I spent 4 days receiving IV immuno-globulin treatments to clean my blood of antibodies, but it will take a while for them to take full effect. So for now I'm resting at home and hope to be back in the pulpit for Palm Sunday, make it through Holy Week, and then another week of rest. We are blessed by great neighbors that helped take care of the girls (8&6) and the dogs, and congregations and communities that have held me up in prayer and want me to be well before I get back into full-time parish ministry. This is a life-long disease and some adjustments will be needed, but I'll live. :)
Selmerfan

[scrapcan]

You have found these folks I hope

http://www.myasthenia.org/

they should be able to give some help.

The important thing is that you have the attitude that you are alive and that you will learn to live with what you need to.

[Certaindeaf]

You will be in my prayers.

[DLCTEX]

My FIL was a minister and was also afflicted with MG. I'll keep you in my prayers.

[ErikO]

Have they started you on the prednisone yet? Keep us informed and I'll keep you in our prayers.

[stubshaft]

Prayers sent.

[Goatwhiskers]

Selmerfan, prayers have been sent. I have a cousin that I'm pretty close to that has the same thing. Keep your head up and your attitude right and you will be able to deal with it. Goatwhiskers

[Lively Boy]

selmerfan...if there is anything we can do to help please holler...we have you in our prayers!
Lively Boy and family

[UT Phoneguy]

[QUOTE=ErikO;1644029]Have they started you on the prednisone yet? [QUOTE]

My Dad has MG- he had the similar symptoms and couldn't hold his head up, chew his food or walk very far. It was pretty scary. He fought taking the prednisone due to the side effects-please don't. He had to find the right doctor that put him straight- they know a bunch about this disease and it is treatable; the internet is your friend. I know it seems like a ton of meds to take, but they help. Keep an eye out for Manganese in vitamins or other suppliments- they can make symptoms worse.

Hang in there- you wouldn't believe the difference between when my Dad was bad and now- six years later- night an day. I used to have to mow two lawns, clear two driveways and take care of two houses. Now I can't even get over there fast enough, because he has it all done! ;-)

[gray wolf]

I hope you get all better very soon, I said a prayer for a speedy healing.
Jesus will not let us down.

[selmerfan]

Yep, taking a low dose of prednisone, and yes, I'm wary of the side effects, but I listen to my docs, and also on mestenon multiple times daily.

[wv109323]

You are in our prayers. I live in a very very small community in the coalfields of WV. There are five or six cases of MG diagnosed in the community. It is suppose to be 1 in 100,000 to 1,000,000 that has MG. I know one of the guys that has it and like you say it was difficult to diagnose but his life is back to normal.

[madsenshooter]

I mean no offense by this, but anyone who takes the word of another just because they have the title Dr. in front of their name is just looking for a quick trip to the other side. Too many of my friends have done the same, blindly listened to a Dr., and they're gone now. Lyme disease can do exactly the same thing as MG, and the last thing you want to do, should you have Lyme is take prednisone. Well, you trust em if you want to, not me buddy! Sorry, the northern part of MN has quite an incidence of Lyme, and it is often diagnosed as something else. UT phone guy, that's an interesting thing, Mn making symptoms worse in MG. The bacteria that causes Lyme love Mn! There's a connection here. Apologies again, I was a biological science major in the 90's and I've had Lyme since I was a kid.

[DIRT Farmer]

I know any minister wants to be in the pulpit for holy week, but it sounds like you have done your work and have a congreation to handle it. With a brother, sister-in-law and one nephew in the pulpits, I have made a standing offer to the ministers around here, give me 30 minuites and travel time and I will fill in for them. A few have taken the offer in family emergencies and health issues. ( I am a certified lay speaker )

[JonB_in_Glencoe]

Well, I got home from the hospital on Tuesday after 5 days as a patient.

I'm prayin' for ya.
Jon

[Big Boomer]

selmerfan:

Pray all goes well with the treatment. New condition to me. I can relate to your concern about special religious observances and your needed role since I am a retired Minister. 'Tuck (as in Kentuck)

[ErikO]

I mean no offense by this, but anyone who takes the word of another just because they have the title Dr. in front of their name is just looking for a quick trip to the other side. Too many of my friends have done the same, blindly listened to a Dr., and they're gone now. Lyme disease can do exactly the same thing as MG, and the last thing you want to do, should you have Lyme is take prednisone. Well, you trust em if you want to, not me buddy! Sorry, the northern part of MN has quite an incidence of Lyme, and it is often diagnosed as something else. UT phone guy, that's an interesting thing, Mn making symptoms worse in MG. The bacteria that causes Lyme love Mn! There's a connection here. Apologies again, I was a biological science major in the 90's and I've had Lyme since I was a kid.

Ooh, great point. Pastor, I do hope they tested you for Lyme's.

[UT Phoneguy]

Yep, taking a low dose of prednisone, and yes, I'm wary of the side effects, but I listen to my docs, and also on mestenon multiple times daily.

That's good to hear- you were in my thoughts all last night. I am glad they are getting on this quick; sounds like you have a good Doc... Don't feel bad about taking multiple doses- when we go shooting; we take snacks and always stop for lunch. My Dad has his schedule down with Swiss-like precision! That old feller is my hunting and shooting partner- it was a drag to see him go down hill...

madsenshooter:
I whole heartedly agree about your opinions on the Dr's- it took the first Doc over a year to stop "practicing" on my Dad and admit they didn't know much about MG- that is once they figured out what he had... He found a specialist at the University of Utah who sat him down, explained that a lot was known about the disease and that they will beat this thing. He has to take a cocktail of meds because it was let go for so long, but he is in remission now and only takes maintenance doses.

That is an interesting correlation between the Lyme Disease and MG- I wonder how many times people are mis-diagnosed. We knew about the Mn problem before, but recently he was taking a prescribed med and it had Mn in it. It sure set him back until the "hidden" culprit was found. It is amazing how many suppliments have that in it.