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I was diagnosed with Adult Onset Limb-Girdle MD in 2016 after beginning to show symptoms in 2010. For several years Drs had no clue what was wrong with me. They ran all common tests with all coming back negative. They then went to more specific testing for my symptoms. These also came back negative. For lack of knowledge for what to treat me, my Neurologist began treatment for Chronic inflammatory demyelinating polyneuropathy (CIDP) with the blessing of a MD specialist. After two-plus years of most expensive treatment, to no avail, in 2016, my Neurologist and my MD specialist decided on a muscle biopsy to test for MD. This test came back with only one marker for MD, therefore, they could not determine the specific type of MD I had. There is no family history of it. My symptoms fit nearly to a T for Limb-girdle MD. I also have peripheral neuropathy which is bothersome but manageable with 600 mg of Lyrica per day.

I am in much pain which none of four Neurologists or my Rheumatologist believe is related to my MD. I do not agree, but who am I? I am no Dr. (tongue in cheek). They’ve no clue what is causing it. I have been on Tramadol, Savela and lesser pain meds for it to no avail. I have a prescription for Tizanidine for leg cramps which I rarely take as the side effects are not pleasant. I take Aleve which helps some but my Cardiologist has warned me not to take it on a continual basis due to the damage it will do to my digestive system. As suggested by my Cardiologist, I also take Omeprazole 40 mg once a day to hopefully offset some of the damage Aleve may do.

I am financially adequate although I must watch my finances closely thereby being yet able to live alone. I am basically bedfast as the more I do the more pain I have. I have discovered the more activity I do the higher my pain levels. I am in much pain even when I lay flat on my back. Exertion increases my pain levels. My pain is nearly always at an 8 or 9. I generally have 5 days of not so horrible pain then, 2 to 4 days where my pain levels are off the charts. Of those 5 not so horrible days 1 or 2 are needed to regain the energy I lose from the 2 to 4 horrible days. I am under an electric blanket on high nearly all the time. I just can’t get too warm. The heat helps my pain a little.

I sleep in a king-size bed which I jokingly say, I sleep on half and my office is on the other half. I am a widow having lost my wife to Ovarian Cancer 6 years ago. I have everything I basically need in my master bedroom. I love to read. I still have 20/20 vision. I have several books I keep on my bed to read, I have my Kindle. I have two computers. I have a hanging basket. I even have my gun which will happily greet anyone who comes walking down my hallway. Lol.  My TV hags over the bathroom door directly in front of me. My walls are covered with pictures. My wife loved pictures and I more. I have a Christmas tree in my bedroom which I leave on year-round. I love Christmas. I love color. I am able to control nearly everything from my cell phone app. I generally get up once a day to eat and as needed to the bathroom although I do use a urinal some. I don’t get hungry. I never have. I have to make myself drink. I’ve never been a big drinker. My children live away.  My neighbors are like family and are happy to take care of my needs.  I must use a walker to walk the 20 steps to my kitchen. I use a computer chair to roll around in my kitchen. I try to keep things I need in reach. Being 6’2″ does help. I am able to stand. It is just very difficult and I can only stand for a few, maybe 20, seconds without some support. I am still able to drive which I enjoy immensely.

I hope this has been helpful, encouraging to someone and not information overload.