can progressive illnesses appear to get better?

[rocmg]

hi all -- i'm curious if ALS, particularly the bulbar versions can appear to get better. my mum, her GP and several friends have told me that my mum's speech has improved since september/october, when she was very breathless and describes talking almost as if from her diaphragm. now she doesn't feel that way, and now feels that the problem is her tongue and muscles under her chin. i am wondering if this is either her getting used to having the symptoms and dealing with them better, or if she has actually gotten better?

i meant to ask this sooner, but didn't want to spam the forum too much.

thanks all, and god bless.

 

[BethU]

Nine months after my disarthria (slurred speech) started, I began speech therapy, and made excellent progress. This was a year before diagnosed with ALS. At that point, like your mom, I thought my problem was shortness of breath and dry mouth. Then, after six months of therapy, I had a minor surgery, and woke up with deteriorated speech that was obviously bulbar connected ... tongue, etc.

Before I started speech therapy, an ENT doctor noted my tongue fasciculations with the "gasping" speech and sent me to a neuro, so clearly ALS was going on.

It is interesting that your mother had the same experience and sequence.

My impression at this point is that ALS (and other neurological diseases, too, I bet) have really oddball symptoms that come for a while, linger, and then change, or go away, or worsen. This includes swallowing: mine began with an inability to chew and swallow solids. Then that stopped, and a month or so later, I began having problems with liquids.

I'm not talking about the "classic" ALS signs ... weakness, atrophy, etc. Those seem to be pretty predictable.

Anyway ... I did experience "improvement" in my speech for a while, but once it changed from gasping to bulbar, it's only worsened.

 

[BarryG]

My experience has been all one direction, downhill. I fist noticed a little bit of slurred speech in July of 07 and went to see a neurologist in August. After a whole bunch of different doctor visits I was diagnosed with bulbar ALS in Jan 08. My speech has been on a pretty steady decline since I started on this journey. I'm told that it is better in the morning than later in the day but it seems just as difficult whenever. My problem has been more the difficulty forming the words with my lips and tongue than the lack of breath but I do lose air through my nose so I get worn out trying to talk.

As far as eating goes, I used to do a lot of gagging on food but I don't that much anymore. I think that's more because I've learned what I can eat and how to eat it than any improvement in my condition. Drinking liquids started to be a problem last summer and has only gotten more difficult.

Like I've heard many times on this forum and from doctors I've talked to this disease is variable in it's effects. Anyway, that's my experience so far, I hope your mom has gotten and continues to get better.

Barry

 

[rocmg]

thank you Beth and Barry for your comments. I too hope that my mum's condition is something more akin to MG than ALS.

I'm sorry your progression has been so quick, Barry. I was thinking about how it is sad that it takes something like ALS to shake us up and make us realize exactly how precious life is. I hope you continue to see the beauty in every day.

god bless.

 

[ptich]

I think that symptoms like weakness, atrophy, FVC usually go in one direction, but even they can improve temporarily with regular exercises; other symptoms may improve on their own.