Remission

[beckycooper31]

I was diagnosed with Als in Dec. 2006. Initially I seemed to progress rapidly with ataxic gait, weakness in legs, and left grip strength. After I was placed on riloteck my symptoms slowed down to the point I often wonder if I have been misdiagnosed x3. Is it common to have a honeymoon period when symtoms slow down and you feel you are doing better. I realize my symtoms are proportional to the activities I do. I no longer walk even with my forearm crutches for exercise it takes too long to recover.
Dx. 12/22/07. Forearm crutches 2/07. Bipap 4/07. thanks for all your advice I have enjoyed reading the threads and have learned a lot.

 

[Al]

Hi Becky. A lot of people report having plateau's as we call them. We'll slide down for a while and then stay the same for a time (how long is anybody's guess) then it usually starts again and sometimes stops again. Here's hoping you stay the same for a long time. AL.

 

[beckycooper31]

Al
I have read many of your responses and value each of them. Unfortunately, I have been posting replies and I guess I haven't known how to post them properly. Thank you for your response. It seems after I finally got the thread to be visible I am having increased difficulty with both upper extremity strength. I know I am complaining and not as debilitated as others . I try so hard to keep striving for the positive and not to complain. It is so hard on some days though. Al, you are a shoulder for many to lean on. Thank you for your strength. Becky
I am afraid because I try to keep up a front but am unsure of the progression. As I guess we all are!

 

[CindyM]

Hi Becky-what's scary is that everybody progresses differently so it is hard to know what the future holds for any given person. Most jsut try to take it one day at a time, but that's easier said than done! Cindy

 

[Al]

Hi Becky. Your post came through fine. Every one of us here is different and our symptoms differ but we are similar in some respects. Don't think that you are different than anyone because your symptoms are different. We are in this together. Take care.
AL.

 

[beckycooper31]

Thanks

You have been so helpful with your posts and patience. Thank you so much. Becky

 

[CindyM]

You're wecome, Becky. How have you been? Do you still think you are in remission? Cindy

 

[beckycooper31]

remission

I am doing about the same. Continue to have decreased balance as if Iam walking on a floating boat. I also have heaviness in my lower abdominal area when standing a while. I get a flutter in my stomach also My left leg has visible fasiculations but they are not constant. I do have a wave feeling in my legs and shoulders but do not always see visible twitching. I do still have pain in my legs. Sometimes I wonder if I am doing better because I do very little anymore. Before I was still working and trying to walk. I have had 2 Emg's and they were normal much to the surprize of my neurologist. I guess we are all in a wait and see situation. I went off of Rilatek due to elevated Liver function. Can you return to it if function decreases? Sorry for ramble. I have Drs. telling me different things. Even the als clinic drs. Thanks for your support. Becky

 

[CindyM]

Hi Becky- nice to hear from you again. I am hoping that some of our long-term PALS see your question, because I suspect anyone who has had ALS for 10 years or longer may have started and stopped and re-started. But this is just my quess. One of the problems is that there is just not enough research done on this disease. That and coupled with the fact that they can't run tests to diagnose it, you can see why different docs come up with different scenarios. Keep checking in, though. I was wondering how you were doing. Cindy

 

[beckycooper31]

other symptoms

Thanks for your response. I have clonus to r foot, fasciculations I notice especially if tired. Very fatigued and sleeping more than I wish but just get so tired physically and mentally. +5 reflexes, ataxic gait and fall if not very careful. Raspy voice with fatigue, biting my tongue and sides of mouth. Atrophy to right leg and increased weakness to left arm( unable to hold blow dryer for hair. I am sure there are other symptoms but these are a few. Also it was thought that my maternal grandmother had als. My SOD1 was negative. Should I have it redone or is there any other tests that can demonstrate familial als.