question on symptoms

[JohnnyMags]

We have an appt with Temple this Tuesday (3/11) for a second opinion but before we go I though I'd run some things by you people, things that I don't usually hear as ALS symptoms.
Number one is my wife was diagnosed as badly needing both knees replaced and now she complains of pain in her knees ... I was under the impression that ALS being a motor nerve disease pain would be more sensory.
Number two she constantly has an upset stomach all the time which contributes to her not eating. She was taking riluzole so on Fri she stopped that but as of today (Sun) she still has the upset stomach ... Her PCP prescribed Ondansetron an anti nausea medication a little over a week ago but that didn't help.
Number three all foods taste bad to her also contributing to her not eating
Number four her foot or feet have numbness and/or tingling.
Number five her feet get very cold.
Number six although her voice has been effected she has none of these problems swallowing, saliva, food getting stuck, scratchy voice, throat lump or something stuck in her throat, real or perceived.
And finally she is able to do normal things (buttons, zippers etc.) although harder for her they are not impossible.

 

[Nikki J]

1 she needs her knees replaced - a separate issue from als. Unsurprisingly they hurt. Gait changes from als probably put more strain on them too

2 she needs her liver function tests done liver issues can be a riluzole side effect

3 see two but taste change is not uncommon

4/5 may be related to her knee issues or a circulation issue. Circulation issues can develop in als if thelegs are veryaffecte

6 happens

7 she isn’t arm onset so unsurprising

Glad you are going to temple read the second opinion sticky in resources and be sure they check her breathing

 

[JohnnyMags]

Thank You Nikki ... I will be sure to look into the things you suggested ... As far as everything tasting bad what can we do? She has to eat but whatever she eats is unpleasent to say the least. We struggle to find something she can tolerate.
Also do you recommend she has her knees done we've had opinions both ways.

 

[Nikki J]

Taste changes were discussed here Diagnosed with Bulbar MND in June 2022 though if it turns out t be liver related should resolve

No unless Temple says otherwise I think rehab would be too hard and you would risk a poor outcome plus progression and use precious time going through the process. But you should talk to the doctor on Tuesday. Hopefully you will also get to talk to the pt. Temple has great ones. She may well need an early power wheel chair for comfort and safety

 

[JohnnyMags]

Nikki ... very help full ... I have one more question concerning the 2nd opinion sticky and that is how do I access the resources section where the sticky lives?

 

[Nikki J]

I am linking resources so you will be able to find other stickies when you are ready but you will see second opinions in the list. The more prepared you are the more productive the visit so leave the others until later and don’t try to read them all at once Resources

 

[JohnnyMags]

Again Thank You Nikki