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...

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Tina-Lawson 07/08/2010

Thanks 2 all who replied 2 my husband post. Well we have final diagnosed of Celiac Disease, Chronic Gastritis, Myasthenia Gravis, Autonomic Small Fiber Neuropathy, H-Polori, spinal stenosis, spondylosis, pheripheryl neuropathy and still pending further testing 4 low amino acids, vit D, testerone, and still having issue w/ bladder at times they say he could have another immune disease?. Swallowing and hoarsenes spells are daily, and seem 2 be getting worse, he had one 20 mins ago-4th one 2day.

Doctors have him on roxhycodeine now, zanaflex 4x day, morphine patch, gabapentin 600 mg x 4 day, 3 bp pills, flurosmide, lunesta, lidoderm patches, 2 inhalers, and some new anto inflammatory medicine.

We are 2 start IVIG w/ 5% solution 400 mg/day ...please give me ur stories I am worried. 1st time will it cure all this...he is having so much trouble w/ speechy n swallowingt, skin peeling, bruising, vision spells, urine spells....very concerned

deleted_user 07/09/2010

I'm so sorry. I could only imagine the stress you are under. I don't have any experience with IVIG but would like to tell you to please try not to stress. Stress will make his symptoms worse and it will do a number on your body too. Reading too much info on the net can get your stress levels up too. When all my dx's came pouring in, I researched every one of them until I had myself so stressed out that I took a long break from the computer. We are here for you and I hope his treatments has him improving quickly. Wishing you the best. Kim

deleted_user 07/09/2010

hi Tina,
I'm sure his Dr.'s are treating him aggressivly to get it all under control. Because symptoms sometimes overlap and the Dr. may have to treat the body for several illnesses at once. IVIG is one of the best treatments i was on to get several symptomatic issues resolved. It was mainly to treat my MG that was out of control, and my body was showing signs of Lupus and another auto immune, i dont even remember the name. Now, i only worry about MG.

When i was getting treatments, there were several patients there for Celiac,Neuropathy,MS, and other auto-immune cases. So i know thatt the IVIG does work, and will probably be very beneficial to your husband. He needs to stay very hydrated 2 days before and after, he gets the treatments.

As RedDutchGirl mentioned, dont let the internet drive you bonkers, because everyone is different, and if you go in with strong will, and strong attitude, it will be a breeze for both of you.

My prayers are with u!
Norma

Tina-Lawson 07/09/2010

Our insurance company filmed my husband months ago, after a round of steriods IV, he isnt suppose 2 drive and he gets pushy sometimes feeling hopeless, he drove 1 mile down the rode w/ me in vehicle. He is on duragesic patch and has vision disturbances. Well went 2 Walmart for 38 mins- he was seen pushin buggy for support. We then filled up 4 one gallon gas cans, he bent over as it was law-he has stenosis and a stimulator, he then put gas cans in bed of truck. We then went to eat approx 30 mins- he had 2 put on his pain patches in video-but they went in restaurant. We got home I unloaded truck but he did gas cans- he then rested for 20 mins- took pain pills- then he put on mask and glasses and spent 20 mins on riding mower. then they didnt see him for 2 days due 2 the fact he pushed hisself 2 much, but because of the steriods he felt alive. NOW they wanna cancel his disability based on 2 hours of limited activity and a day and half on none. How will we afford IVIG or his meds.

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