Flip4it
Member
- Joined
- Jan 28, 2012
- Messages
- 14
- Reason
- Learn about ALS
- Country
- US
- State
- Maryland
- City
- Myersville
Well I feel as though I'm in a toilet bowl spinning around. I have been tossed around by so many doctors, it's ridiculous at this point. My complaints to the doctor went on for at least a year that something was wrong with my hands..."my hands are weak". That same doctor/primary care physician (who is no longer my doctor!) kept telling me I had arthritis. Then he told me I had Sjogren's. Despite the fact that he told me "I didn't need to see a Rhuemotologist because I was in the early stages of Sjogrens", I went anyhow because my symptoms were becoming unbearable. After further testing, I don't have arthritis nor do I have Sjogrens. The Rheumotologist told me to go to a neuro asap. I was misdiagnosed and ignored for one year! I started to get worse last October. By November, I had to be put on short term disability because I was extremely weak and the weakness spread to my arms. Now it's in my legs. I look like a balloon that was deflated. I am so thin and my arms, hands, legs and shoulders are severely atrophied. For a two solid months, I had unbearable cramping in my legs with my arms plastered to my body because they were painfully rigid. Horrible tremors. I have no control of my fingers. I don't even look like the same person. Today, I fell down twice and I'm unable to go shopping without a wheelchair. I finally have an appt on Thursday to a Neuromuscular/ALS Clinic but am so angry that I have been tossed around until it's gotten to the point that Ray Charles could see there is something seriously wrong. I was literally ready to walk in the office naked and yell "Ya see something wrong here!" It just seems crazy that you literally have to be in a wheel chair and wasting away to nothing before you can get any sense of urgency. I'm preparing myself for the worst. I have fasciculations in all four limbs and my face now. I'm so sad. I'm only 49 and my son's dad died at 42. I really feel bad for my son. He's so stressed out and has watched me waste away in a very short period of time. God I pray this is something else. I go back and forth between crying and being angry.