Can ALS symptoms come and go?

[stacykoca]

I have a very dear friend that was recently diagnosed with ALS.
I have gotten a lot of encouragement and information from your forums, and now I have a few questions.
Last week my friend was lying on her bed and couldn't raise one of her legs, but could the other. Now she can lift both legs. Sometimes she can lift a cup, sometimes she can't (using the same hand). I thought ALS symptoms were permanent, and didn’t come and go.
Also, the first of June she moved, and was carrying boxes, climbing stairs, etc… She only complained of being easily fatigued at this time. Now, she can’t do stairs without help, or get up by herself, much less lift anything heavier than a cup. Is progression this fast normal. She doesn’t experience Bulbar symptoms yet.

Thanks in advance for your time and answers.
Warm Regards,
Stacy

 

[BWk]

I was wondering that also? Nov. 2005 I was starting to choke once and awhile and in Jan. I couldn't seem to get saliva all the way down very well and then by late Feb. 2006 I could swallow fine and still am doing great in that dept and it's almost Sept. Barry

 

[stacykoca]

Please answer

I have another question. I am anxiously checking back for replies to my first question... And, the above poster is very interested in hearing from ya'll ( I live in the South) as well.

My friend went for a second opinion today. The neurologist told her that her symptoms were progressing faster than the typical ALS patient would present with, and her reflexes were different than the typical ALS patient's. She didn't ask about on and off symptoms. He agreed her EMG is positive for ALS, and he took more blood, is having her do a 24hour urine collection, and will repeat a EMG next week. (her only EMG was last week).
I was afraid in my first post that her ALS would be very aggressive since the onset of her symptoms started in June, and she has really noticed an increase in weakness in both arms and legs. I didn't think about the rate of onset being a factor in deciding if it was ALS or not. (I know it doesn't happen from start to worse in a few weeks like Gillian Barre). I looked on the web and couldn't find any information- only that progession varies, and that was addressing long term. If anyone can shed light on this I would really appreciate it. Also, what are typical reflexes. I read about brisk reflexes- why would reflexes be brisk?

Thanks so much and please answer!
Stacy

 

[John1]

Stacy and Barry,

Speaking mostly from experience but also from reading posts over the years, yes, symptoms can vary over time. This is much more true of bulbar symptoms than with limbs but both occur. For example, I had severe problems with choking and swallowing in 2001, the year following my diagnosis. Over time these have varied up and down but now they are less severe than they were 6 years ago. Similarily my speech varies with some days being quite understandable and other days struggling. Limb weakness on the other hand has been slowly progressing over that time. Some days are better than others but overall the trend has been relentlessly weaker. In the case of your friend, the incremental strength required for her to raise her leg vs being unable may be slight. I'm afraid her progression does sound quite rapid.

 

[stacykoca]

John,
I really appreciate you taking time to answer, and sharing your experience. I wish you and Barry the best, and will keep you two in my prayers as well. I have spent the last several days reading this forum and it encourages me that ALS doesn't seem to get the best of folks, and they still remain kind, encouraging, and hopeful.
Thanks Again,
Stacy

 

[BWk]

Thanks John for the info. Stacy, brisk reflexes just means your reflexes are to fast, one of the things I noticed about myself way before I new I had this disease! Don't know why this happens with als. Sorry your friend is progressing so fast! Barry

 

[Snowbird]

Everyone's symptoms are different, and can progress at different rates. And sometimes things seem to stabilize for while. My husband never did get any bulbar symptoms to speak of, although in the last few months he had to swallow much slower than normal. He eventually got aspiration pneumonia (from a piece of food going into his lungs) and we all chose to not treat it. The last 2 months my husband had had enough and was ready to move on. In fact, we even prayed to God to take him. He was heavily medicated so at least he was not in pain, but with the medication he could not activley participate in conversations. He was okay with that, and still wanted people around him all the time, carrying on with normal conversations and of course, laughter. The fear is unbelievable, and he hid it well.

From experience, I would say get out as much as possible and make life as pleasant as possible. Positive thoughts have huge healing powers. AND laugh a lot.

All the best!

Pat

 

[Jeannie]

Hi all,

Some symptoms do come and go, this is down to Reinnervation: Restoration of nerve function after it has been lost. Reinnervation may occur spontaneously or be achieved by nerve grafting. The EMG (electromyogram) may show evidence of denervation with subsequent reinnervation in motor neuron diseases such as ALS (amyotrophic lateral sclerosis) because the remaining healthy motor neurons can reinnervate the denervated muscles.

It isn't a over night thing but gradual, this is why month a pals cant lift a cup but another month passes and he can.

Jeannie x