Read Before Posting / Could this be ALS Question

[Zoey B]

Hello. I am a 57 year old fit/active woman with increasing muscle weakness/tightness/pain in legs, arms and shoulders, along with fasciculaions. To be respectful to those on this site with diagnoised ALS, I carefully read the "Could this be ALS" and "Read Before Posting" articles. I am however confused by the content. The articles state: "ALS is about failure—falling down, being unable to stand on your toes or heels, being unable to button your shirt, being unable to lift your hand, being unable to open a ziplock bag, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS."

1. Some diagnoised with ALS on this site discuss weakness before failure. Would someone help to clarify their own experience with weakness before failure and how long it manifested before diagnosis.

2. Several responses on this site referrence that muscle pain is not an early indicator of ALS. Yet, medical sites indicate muscle pain can be an indicator. Would someone help to clarify their own experience with weakness tightness/pain before failure and how long it manifested before diagnosis.

3. To be specific about my symptoms, I have had increasing muscle weakness (but not failure) in my legs for the past 12 months, with two instances of "knife-like" cramps in my calves at night. I have on and off muscle tightness/pain that started with my feet/calves, then spread to my deltoids and biceps and now finally to my shoulders that literally feels as though I've just lifted heavy weights the day prior. The deltoid issue persisted for about 2 months a year ago and then went away. This time, the feet/calves started in November, then to the arms in December and now the shoulders in January.

I did all of the neurological testing (bloodwor, MRI, EMG and NCV last November for my arms and all came back normal). I am considering another neuro visit for the new symptoms in the past 60 days but in the meantime, curious if any of this aligns with an unusual presentation of ALS that others on the site may have experience.

I appreciate any feedback and highly respect those of you diagnoised and helping others who have questions.

 

[Nikki J]

1 I fell over stepping sideways. First and only symptom for 2 months. My sister could not button her shirt. Failures. Not hard. Impossible

2 those sites are general and non specific. Cramps can occur early with failure and I suppose are muscle paicns but they are like bad charley horses that make you want to cry

3 cramps are of course common and in my experience when they start are not 2 instances in 12 months but pretty much daily or multi daily. If you have concerns go to a doctor. They can tell if those feelings of tightness are spasticity and if you have clinical weakness

 

[Zoey B]

Thank you Nikki. Yes, I'm trying to get a referral to a neuro - new insurance and they are being difficult!

 

[lgelb]

Even a PCP can baseline/track your strength, and what you describe does not sound like ALS, least of all the deltoid issues that went away.