Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Even though my single fiber test was negative, my neuro is convinced based on his clinical evaluation of me that I have MG. Just so happened when I was in his office today, the visit went long as there was a delay in getting the results from the SFEMG from MCG in Augusta. My mestinon wore off while he was examining me and my face started twitching, my voice was faltering and I was starting to get weak and shaky. My neck has been weak every time he examines me and I am unable to resist him pushing my head down.
He is beginning IVIG treatment as soon as I can get in at the local hospital. He is pretreating me with tylenol and benadryl before each treatment. He wants me to start on Prednisone on the same day. I will have five treatments over five days. He also ordered labs for parathyroid hormone, LEMS antibodies a comprehensive metabolic panel and CBC.
He seemed sort of excited about getting started treating me.
On the last visit he had told me that if the SFEMG was negative, he was going to order a muscle biopsy.
He decided to go with his gut feeling that it is MG and proceed. Thank goodness. I just want to feel better and try to get a portion of my life back on track.
Now I need to gather all the info I can about the IVIG so I can get myself psyched up for it. Any and all information or pointers would be greatly appreciated.
Linda
He is beginning IVIG treatment as soon as I can get in at the local hospital. He is pretreating me with tylenol and benadryl before each treatment. He wants me to start on Prednisone on the same day. I will have five treatments over five days. He also ordered labs for parathyroid hormone, LEMS antibodies a comprehensive metabolic panel and CBC.
He seemed sort of excited about getting started treating me.
On the last visit he had told me that if the SFEMG was negative, he was going to order a muscle biopsy.
He decided to go with his gut feeling that it is MG and proceed. Thank goodness. I just want to feel better and try to get a portion of my life back on track.
Now I need to gather all the info I can about the IVIG so I can get myself psyched up for it. Any and all information or pointers would be greatly appreciated.
Linda
Will
Good luck to you.
Annette
Great news that he is hopping on the treatment and is happy to do it. Do drink lots before, during and after ivig. There are many resources for information on ivig. The links group may have some info, I will go check.
If you are having any side effects make sure the nurses slow the rate of infusion. At my infusion clinic the fastest they will run it is 250. I never go over 100 because I tend to get headaches.
There is a small container sold at CVS that several of us have. It attaches to your keychain and has a rubber seal so you can keep mestinon in it and have it with you all the time.
I am so glad he saw you when your mestinon wore off. It was obviously a convincing experience. :-)
Cathi
As Annette said, hydrate, hydrate, hydrate. All I did was drink water, sleep and go to the bathroom (you will be able to get out of bed and drag the old IV pole to the bathroom). You might take plenty of little snacks with you. I also tended to eat my way through IVIG.
Good luck on your hospital stay.
~sherry
I found one of the article I was thinking of and posted it in the links group. You can also go to www.igliving.com and sign up for their magazine which is available by mail and online. This article is in the past issue April-May 2010. It is called Understanding and treating IG side effects, but also covers what you need to do to prepare for infusion.
Cathi
Cath, I already had a couple of those medicine vials because my late husband had to keep his meds on hand at all times and used these all the time. I have been carrying my mestinon in one from day one.
I often get bad headaches anyway if I neglect hydration, so I will be trying to drink gallons at that time to try to avoid one from this.
I am still a little scared as this is all new territory for me, although it can't be nearly as tough as the dialysis my poor hubby had to endure. I will just have to put on my big girl panties and come here for my support.
Thanks again,
Linda
Wanted to wish you well.
Larissa