Hi huskerdoc76,

welcome to the forum, are you a Dr with mg or just an interested dr????

So by IG, do you mean immuno globulin??
I would love to have ivig more often, but am only given it if I crash, as my neuro says "its far to expensive and hard to get hold of" ( I live in Australia) grrrrrr he doesn't see me struggling everyday

Great to see you around here, looking forward to seeing more of you
Kate

home self treatment was not brought up, Ill ask the neuro about it.
I had only 2 days this time, not sure how Im feeling. I feel ok, but with the 100 degree temps in the NE every day this week, its hard to tell if Im lethargic because of the temp or the ivig hasnt kicked in full blast.

Being from Ma I have been thinking the same thing... Is it the heat or the MG

I had an incredible nights sleep last night and today, in 92 degree temps, I spent the bulk of the day outside working, taking cooling off breaks, tons of water, but I was ok, a little tired.


Im seeing the neuro this week, and Im going to insist they send an IV pump for my august treament. probably wont have any luck, but doesnt hurt to ask.

I finished up 3 days treatment this week, finished up last night around 6pm.
I had to work today, and was suprised how weak I felt all day.
I thought after a few doses of IVIG Id be used to the effects and not suffer from the weakness and tired feeling I had after the first treatment the day or two after. Is this something that will be pretty much standard, the same weakness feelings for a couple of days after treatment?
I really thought Id be flying high the next day by the time I reached my fourth or fifth treatment. The good news is I still have not taken any mestinon and its been months.
My home nurse brought an IV pump one of her nurse friends had to show me the difference in infusion rates and how I dont have to worry about where I put my arms, if I raise them, plus, I could hold the pump and just lay the bag of gamunex on the table and Im able to go into my office and work comfortably, or not have to drag the pole with me, and how the pump just keeps it flowing at a nice even rate.
My insurance company is way too cheap to let me have a pump, but this visit to the neuro, Im going to find out how to fight them on this.
First day off the ivig, not feeling all that great after a days work.(I did have an awful night with sleep last night, sure that didnt help)
hope everyone is feeling a little better.

Ive had my issues, but Im generally feeling pretty good.
Strong enough lately. Finished building my sons dining room chairs, so his dining room set is complete.
I get weakness in arms now and then, frustrating, but livable.
I have belief now that my world isnt over, so I can keep on kicking and screaming and worry bout MG another day.

Allen, this is great, I'm glad you have been able to complete you sons dining room set!!!

Hi Allen, I am struggling with many of the same feelings. I had a flare in March that took more ability away including driving even the short distances I could. I found a great fella that counsels people with chronic pain and diseases. I cant get to him now because I cant drive but he was a very very kind man who did help. It is a massive adjustment. I raised my 2 girls mostly alone. I went to college later in life. Now to suffer so much loss is beyond words.

On the TV show Rubicon there was a phrase the other nite that gave me pause. It was about fear. Roughly he said there's the kind of fear that makes you dig in and try to find the answer, doing every thing you can and there's the kind of fear that paralyzes you. I can get paralyzed at times but mostly I dig and move forward knowing there is more. There is an answer that will help me live with this.

I dont do well with being in bed either, much less a hospital bed. Even on the job I was the kind of person who needed to get up and walk a bit or just get distracted every 20-3min. I wouldnt do well with 5 days either. I wonder if you were open with them about this they could give you something to tamp down the urge go. Actually I have great success with acupuncture to quiet this part of my nature.

Annie59

Ill pop up a picture when he gets it all in place.

Me, this IVIG has given me more than my acetylcholine levels back.. It has given me a bit of positive thinking and positive vibes. For a year I was thinking Im a myasthenic with a cruddy life. Now I think I have a good life but I have to deal with myasthenia. Theres a difference for me. The disease has STOPPED running my life. Even if the IVIG stops working its magic one day, Ive accepted there isnt anything I wont overcome. IM not getting mushy or anything, I just felt like I was handed a prison sentence for something I didnt do.
Im retiring next month, well, Im 98% sure Im retiring next month.
The stress from work was overwhelming and my wife insisted I retire and live a more stress free life.
Shes a smart woman.

Annie, I hear ya. Its too bad there arent a bunch of us living closer to each other so we could help each other out if one needs it.

Allen, congrats on your "impending" retirement. Now you'll be able to devote more time to your beautiful woodworking.

I'm glad that you've come to terms with your MG and are taking control of it rather than the other way around.