Hi Beebe. I am so thankful that it isn't ALS. My husband is still struggling. He has a lot of pain and stiffness. The muscle cramps are really bad. He gets them all over. The more physical he is the worse it is. The muscle wasting he has is from focal myopathy. (ulnar nerve and carpal tunnel in...
Hi Beebe,
I haven't been on the website much. I'm so sorry to hear about Jack's passing and Stephanie's health. My prayers and thoughts are with you and your family. My husband was diagnosed with benign fasiculation cramp disorder. He was laid off and lost health insurance. The doctor...
It could be benign fasciculation syndrome. I think the website is www.aboutbfs.com. Try using the search option so you can see other post about it. Take care, Sunshine
Hi MTV. We also like Dr. Mintzer. He referred us to Dr. McCluskey because he is a specialist with MND. I guess that is why you chose him. The wait is going to drive you crazy. Maybe they could call you if someone cancels an appointment? If you feel you can't wait, maybe try another ALS...
Hi Tom. Try to think positive. I know it is hard. The odds are in your favor that you don't have ALS. Try to find a doctor who will listen to you. Even if you don't have ALS, you still want that doctor to find out exactly what you do have. I wouldn't hold off on your plans. Discuss with...
Hi Beth. I agree with you. You stated it perfectly. I wish I could put my thoughts down as clearly as you did. Maybe that is part of the problem. We are communicating by the written word and not face to face. It is hard sometimes for people to express themselves this way. Maybe we all can...
Hi Beebe. I'm sorry to hear that. It sounds very painful. Please let her know I'm thinking of them and keeping them in my prayers. I hope you both have a great Mother's Day this Sunday. Take care. Jennifer
Hi Beebe. Dr. McCluskey is from University of Pa. He also saw Dr. Mintzer at Jefferson. My husband is hanging in there. How is Jack, Steph, and family? I kinda remember one of your post that Stephanie was going to have surgery. How did she make out? I hope things are ok with everyone...
Leslie,
I agree with you. There are many people on this site that have not been diagnosed either way yet. It seems that it can take many years to be diagnosed with some people. Are they supposed to just sit back and not ask questions or give advice from their experience? People are only...
Hi Cyberhart. Did the doctor tell you that you have muscle wasting in your hands or do they look that way to you? Ulnar nerve entrapment can cause wasting in the arm and hands. It might be worth having the doctor check for that along with carpal tunnel. Take care, Sunshine
Hello. My husband is going to him. He seems to be good. The office staff can be very bad at times. Not returning phone calls etc. If you have a problem keep calling and calling. Let him know also if you are having problems with getting call backs. He will have no problem ordering the test...
Hi Willow. It is good to hear that everything went ok with your muscle biopsy. I don't think I could have looked at any of it. I would have had to be looking in the opposite direction. I hope the doctor will have good news for you. Take care, Sunshine