Dear Boby
Noticed you are new to the forum. My husband has been diagnosed with PMA. I don't know of many PMA's on this site. Could you email me and tell me about yours.
My husband's upper body is affected. Both arms, trunk, neck.
Thanks!
Hello. While I am awaitiing access to the members list and the private messaging feature, I will go ahead and post information on my diaagnosis of PMA.
Symptoims are severe weakness in left left, muscle twitches (upper and lower), and loss of balance (now almost complete.) Tests were MRI's, EMG, nerve conductive study (NCS), spinal tap, many blood tests running the gamut of medical codes, then repeat of EMG and NCS in ALS Clinic in major Texas University Health Science Center. Four neurologists (including neuromuscular specialist) conferred and agreed on diagnosis of PMA.
I began taking Rilutek on November 19, 2007, plus Vitam E, Coenzyme Q-10 and Melatonin. First liver test to assure Rilutek not affecting liver on Decmeber 19, 2007. Results normal. Neuromuscular specialist told me to stop Coenzyme Q-10 because of loose bowl movements. I am also glucose intolerant, at high risk for Type II diabetes (two siblings died from diabetes complications.) I now monitor blood sugar twice weekly. Needing to eat from the bottom of the Diabetis food pyramid (whole grains, fruit and vegetables) provides so much fiber that my stomach gets messed up when fiber combines with Rilutek and vitamins and minerals.
I was prescribed with AFO's but have had trouble using them because I had a bruise and callous on the ball of my right foot - maybe caused by too much load on right leg because of loss of strentgh in left leg. I have seen a podiatrist twice to get part of callous removed and inserts for shoes. Orthotic tech has also put a bubble in right AFO, but this has only complicated the problem. I am trying to decide who I call next, the Orthotic tech or the Podiatrisit.
Taking medication (melatonin) as prescribed at bedtime is problematic because I have a hiatal hernia and cannot drink or eat for two hours before bed time. Any medication has to be taken with only a small siip of water.
We've had grab bars installled in both bath rooms, and in the shower where I bathe. Showering was a challenge before this.
The local ALS coordinator has visited our home to make suggestions on how to better cope with this malady. We thank God for her.
Diagnostic tests began in April, 2007. I started usiing a cain in mid summer, which enabled me to keep up with my wife when walking. Now, I can only use the cain to maneuver in the home. Any walkiing outside is accomplished with a walker. We have also have a wheel chair. Both the walker and the wheel chair are on loan from the local ALS Chapter. This support group has been a God send to us.
I can still driive. We have a motor coach which we use extensively to travel to different parts of the country and to follow our University sports teams. We will be changing our seating at our different sports events from regular seating to mobility impaired seating.
We do not know what the future holds. We have just begun this journey. We do intend to keep our liives as normal as possible, as long as possible.
I hope this information helps. Best wishes to you and your husband.
