Questions

[sharonca]

I have an acquaintance who today was told by her GP that she had a serious neurological problem and needed to "ralley the troops". Scary, huh. She is especially scared since I am recently diagnnosed with ALS. She has had severe back pain for several months and today was told that, I think, one side is not working correctly in her limbs, her tongue is not working right and her eyes are not tracking correctly. She has an MRI scheduled for next week. I know that back pain is not a symptom of ALS and of course the tongue issue could be. But I have not heard of anyone having trouble tracking with their eyes who has ALS. Is this a symptom I just have not heard of? I'm not going to talk to her about her symptoms - actually she does not want to talk to me at this time - too scary. But I'm curious about the eye tracking. Anyone have any info for me? Thanks.

Sharonca

 

[carlogio]

Could be a lot of neurological problems that could one sided problems, eye problems and tongue issues. BUT I'm pretty sure eyesight is not usually affected with ALS. Is she experiencing any double vision? Any blurring or colour differences from eye to eye, or any pain?

Talk about her doctor having an unhelpful bed side manner! Why approach the subject like that? Also it's strange that she hasn't referred her to a neurologist to decide what tests to schedule. I hope she's okay though!

 

[crystalkk]

Sharonca,

How long has she been having the other symtoms (not her back). her back might not have anything to do what she has going on
Yes, I do think in much later stages of ALS your eyes might not track right. You can see but you might not be able to to move the pupils anymore and they do not dilate to different light. It doesn't happen to everyone. and it doesn't sound like als, you might be able to reasure her that.
her doctor bedside manner is very scary "rally up the troops" I don't know why he did not get her in for mri immediately, and refer her to a nuero. It sound like it could be a stroke, tumor, or MS

 

[sharonca]

So the rest of the story turns out to be... the doctor was more comforting that I originally heard. She is seeing a neurologist next week along with the MRI. She has twitching on one side of her body along with the gag reflex not working right and eyes not tracking correctly. I think she is more freaked out thinking that she could have ALS due to my diagnosis. I have sent her a message that I do not think it is ALS. I didn't give her suggestions, but I think it could be MG among others.

Sharonca

 

[Markbreton]

I've never heard of the eye problems you mention as a symptom of ALS. Wait for the MRI and my thought is that it is not ALS... Don't assume this dreadful disease is what she has. Think positive.
Mark

 

[siuska]

sounds like Myasthenia gravis to me. How are you doing?

 

[sharonca]

Thanks for asking. I'm doing OK. Just started on Lithium and am very hopeful. My right hand started acting up this week-end and am really excited about the thought it might slow to stop here. I was told to not type so much so as to slow down the progression to my hands. Hard to say what to do and not do.

I also thought of MG on hearing symptoms by my friend. We all know how hard it is to not know.

Sharonca

 

[siuska]

yes, i know...
i am glad to hear you are trying the lithium-so far seems to be good results...there was a discussion on the ALSTDI site about Picrorrhiza kurroa herbal suppliment. you should check it out:
http://www.als.net/forum/topic.asp?TOPIC_ID=2345