hello you nice person i hope you are fine! you wrote, that your husband were diagnosted with bulbar. how can a doctor diagnose bulbar? can you see something on the emg or on the reflexes? i have tough slime in my trought for more than a week now, my voice sounds a little bit scratchy and i have a dry cough turning the night ..and my muscles twiches...i know, you wrote this is no bulbar symptom. i would be happy, if you write me back. greets from austria ( and sorry for my bad englisch)
Just read a post that you posted about the duration of your's and Chris' suffering. I think you mentioned 11mos. Is that common for ALS/FTD? I know from what I have read so far that it has a more rapid projectory but jeeeshhh...is it that rapid??? commonly???
Thank You, Thank You....a hundred x's Thank You. I am so sorry that you had to be a trail-blazer through this horrid terrain but thank you once again, for mapping it out for those that will follow . My Jim seems to be rapidly progressing. His diagnosis was in January. He already has his feeding tube and his speech, swallowing, coughing, clearing his throat, hands becoming immobile, communication becoming more difficult by the day. But he too remains upright and able to walk. I am reading all your sources and every thing makes perfect sense to me now. This has been going on for quite some time now...Longer than the ALS symptoms. So which comes 1st? The FTD or the ALS? And if the FTD symptoms emerged 1st, I will continue to link to your resources to try and figure it out. Our paths seem so similar. My gratitude for you sharing is immense , Pam
I really appreciate you even writing to me. I want to let you know that. Even the fact that you noticed I have been on. I do not understand why my muscles are disappearing and it is scary. And the trouble breathing is even scarier. But I am doing my best. I just am losing functionality and I cannot even pick up my son. Its sad. I usually am on here when they are sleeping. But thanks for writing to me.
I know. But I have lost muscle in my foot to the point were it is deformed and my arm, shoulder and calf as well. My GP was actually shocked when he saw me again. Everyone thought this was in my head but the atrophy is very very visable at this point. I can't use my right foot at all. Now twitching started in my left side and I am concerned. I am not sure what is happening but the trouble breathing is stressing me. My body is giving up
Hello, you've replied to my first post on here, I have one question not to be rude or bother you; but I'm curious. Does atrophy with ALS start as a dent or the complete wasting or a muscle. I know that the atrophy comes after paralysis, I'm just wondering how that part works when it actually atrophies.
thank you so much for response. Can I ask another question on what I am experiencing? By message like this or would you rather I post it inforum..If I am bothering i will not ..I just have a few other questions would like your thoughts
thank you Jim
I notice that you are great on this forum. I have read several of your comments and I notice that you truly care about people. I realize that having to answer the same questions over and over can also be frustrating and I want to apologize ahead of time if I offended you in anyway. A couple of months ago, I googled some of my symptoms and ALS popped out. I did my best and stayed away and kept from posting until now. I am really scared, I have to young kids and the thought of me being sick scares me beyond reason. I can't sleep, I am constantly thinking about the worst case scenarios and I feel sad 24/7. I just posted my second thread and this time I was more brief, but yet more detailed. Can you please give me your honest opinion on what I posted. Again thank you so so much! You don't know how much this means to me. Thank you!
It was very comforting to check in after several months and find that you and several others are still sharing your wisdom and love with everyone. I find coming back here makes it all so real for me again, and it's almost unbearable. I want to reach out to some others that are in Pgh., so I will try to 'get over it' and get on with things. You are truly an inspiration.... Trina