[Llonghair]

Hi, it has been a long time since I have been here. I was dx with MG in 2004. Then in 2005 I was dx with Celiac Disease.

Now my 83 year old mother was dx with MG last month. She is seronegative and NCT and EMG are negative but the tensilon test was slightly positive. Mom says she only talked better because she was lying down and it is easier to talk. She is not weak except for her mouth.

At first she was very horse then she started loosing control of her tongue and now she just has jumbled conversation. (Can not understand her at all) They ruled out stroke and she still is brain wise ok although dad notices more emotions...easier to cry and get angry. She was still active and played golf until the infusions started. She had a reaction to the infusion which caused back pain and chattery teeth. The stopped and gave her benadryl and then resumed.

Afterwards her blood pressure went up. She does take coumadin and something else for afib. She ended up in the hospital for a couple days till the BP was under control. They also started her on mestinon 20mg 2 x day. Dad said she got worse after the fusion and was having drooling problems.

They went back to the doctor and had her get a feeding tube put in her stomach and put her on prednisone 20mg 3 x day. Her feet swelled up for a day but seems better today. The doctor said he wasn't sure it was MG anymore and wants to send her to another neuro. She did do some cleaning yesterday on her hands and knees...cleaning her porch floor so she does have some energy.

Since I never took any of the MG drugs I don't know how they work. She has been on Mestinon for 3 weeks and 2 weeks prednisone and infusions 2 times about 3 or 4 weeks ago. Should she have seen some improvement?
Not being close by I am not able to talk to the doctor and my mother has wanted no outside interference with her treatment...but now that the doctor is giving up we are looking for ideas and suggestions.

Dad is going to get all the bloodwork so I can see what they have and have not done. He is also going to ask to see the doctor alone and has a list of tests to do if not yet done...I am thinking maybe thyroid could also be playing a part as her eyes are a little buggy according to my dad and sister. I do have a daughter that had Graves disease.

Any thoughts or ideas would be greatly appreciated.