Worried about progression

[Fen2477]

Hi, it's been 2 weeks since I was diagnosed. Took Riluzole the day after diagnosis but I immediately experienced very bad joint and muscle pain with active fasciculations on my legs over the next 7 days, which also led to some throat muscle tightening. My Dr advised me to stop riluzole and try again after a few days, citing hypersensitivity.

Over the last 2-3 days, my legs have gone from heavy to weak, with muscle atrophy at the knees. This all happened quickly within the last 2 weeks. Am I progressing too quickly , or is it a side effect of Riluzole? I had arm weakness on both sides for months before diagnosis, but my legs are deteriorating quicker than my upper limbs. I have stopped riluzole for now. Dr plans to prescribe me with radicava once I get the green light on sulfite allergy.

 

[lgelb]

Was blood for liver function testing drawn before you started and after you stopped the riluzole? That might help answer your question.

 

[Janbo]

The most significant jump in progress my pALS had was the week after diagnosis, which we think was caused by the shock and stress of the news and facing what was to come. We've adjusted to our new normal now, but any time he has a fall or gets a cold, there's another increase in progression. Sometimes it gets a little better when he recovers, sometimes not.

Just other things to keep in mind that may affect how you feel.

 

[Loulou22]

I really think there is something to be said about knowing you are ‘sick.’ I was oblivious to some of my difficulties until I was diagnosed and my general depression and anxiety following diagnosis exacerbated everything. Stress was a big factor and continues to be.

 

[Fen2477]

Thanks very much for sharing

 

[Jimmyccorn]

Like most, my depression and anxiety went through the roof after Dx. I went on 40 mg of Paxil along with about 4 weeks of time and now I am so much better and balanced, especially emotionally.