This thread is not about asking whether I have ALS. After this past week, I've started to accept that I probably do. But I'm looking for emotional support going forward.
My symptoms started in April with unexplained muscle soreness in my right bicep and thumb. I saw a neurologist: no weakness, clean EMG. In late July I started getting intermittent muscle cramps in my right lower abdomen, that have spread to the same muscle on the left side in the past couple of weeks. I've been to multiple doctors who have ruled out gynecological and GI causes for this. I started getting some cramps in my right thumb too.
I went back to the neurologist last week and had another EMG. They found chronic neurogenic changes in my right thenar area. The same place where it was sore! Still no weakness. Finally I saw a neuromuscular specialist this past Friday. He had vague explanations for everything. The EMG abnormality was minor enough, he said, that it might just be "normal for me". (I didn't have any numbness, tingling or radiating pain that would indicate a spinal issue.) He said the muscle cramps are just muscular and gave me stretching exercises. But I know my body too well to accept this. I'm a runner and I've had lots of cramps. These feel unlike anything I've ever felt. A sharp twinge of pain every few minutes for hours on end.
I asked the neuromuscular specialist about ALS. He didn't think it was a possibility because I've "already been studied so much". (I saw a neurologist in his practice 2 years ago for benign fasciculations.) My parents and husband believe him without question. I wish I hadn't done so much research about ALS, but I have, so I am fairly confident that I have it. So I feel very alone - possibly facing a terminal illness without anyone else believing that I have it.
Have any of you gone through this? Can you provide some advice on how to get through this time until I get a definite diagnosis? I know that the right thing to do is live every day to the fullest while I still have all my physical capabilities. But it's hard because I'm feeling very depressed and alone.
My symptoms started in April with unexplained muscle soreness in my right bicep and thumb. I saw a neurologist: no weakness, clean EMG. In late July I started getting intermittent muscle cramps in my right lower abdomen, that have spread to the same muscle on the left side in the past couple of weeks. I've been to multiple doctors who have ruled out gynecological and GI causes for this. I started getting some cramps in my right thumb too.
I went back to the neurologist last week and had another EMG. They found chronic neurogenic changes in my right thenar area. The same place where it was sore! Still no weakness. Finally I saw a neuromuscular specialist this past Friday. He had vague explanations for everything. The EMG abnormality was minor enough, he said, that it might just be "normal for me". (I didn't have any numbness, tingling or radiating pain that would indicate a spinal issue.) He said the muscle cramps are just muscular and gave me stretching exercises. But I know my body too well to accept this. I'm a runner and I've had lots of cramps. These feel unlike anything I've ever felt. A sharp twinge of pain every few minutes for hours on end.
I asked the neuromuscular specialist about ALS. He didn't think it was a possibility because I've "already been studied so much". (I saw a neurologist in his practice 2 years ago for benign fasciculations.) My parents and husband believe him without question. I wish I hadn't done so much research about ALS, but I have, so I am fairly confident that I have it. So I feel very alone - possibly facing a terminal illness without anyone else believing that I have it.
Have any of you gone through this? Can you provide some advice on how to get through this time until I get a definite diagnosis? I know that the right thing to do is live every day to the fullest while I still have all my physical capabilities. But it's hard because I'm feeling very depressed and alone.