For the past 8 weeks I have been experiencing what I fear are symptoms of ALS. The symptoms started with strange sensations in the muscles of my left forearm, almost akin to tightness but a very different feeling than what I am accustomed to when I think of tight muscles after a workout. It felt more like there was something wrapped around my forearm. That was the first symptom which started in the first week of May. Since then the feeling has spread to the backs of my left and right forearm. More and more now it feels like fatigue and weakness than anything else. However I am a thirty year old male who has always been in good shape his whole life so I still have strength and I have had a GP visit and a neurologist visit and I have been able to pass all of their strength tests. I also currently am having muscle twitches all over my body. They have been become more constant as the weeks have gone by. I had a full work-up with a head MRI, cervical spine MRI and an EMG of my left arm. The EMG was conducted exactly 7 weeks after I first started noticing symptoms in my left arm. The EMG was completed by a Physical Medicine and Rehabilitation doctor, not by a neurologist. Everything came back normal and after reading the results of the EMG and conducting his clinical exam the neurologist told me that I do not have any signs of ALS. That was two weeks ago and my symptoms have persisted.
I know that I am only thirty years old and that I am not statistically at risk for this disease. However, for the past 8 years I have taken Propecia (Finasteride) for hair loss and I found three other young men on an ALS forum (ALSTDI) who reported taking this medication for several years prior to presenting with symptoms and eventually being diagnosed with ALS in their late twenties. I have looked but I am unable to find any scientific connection between Propecia and ALS. So although there has been no connection made between this medication and the development of ALS, I am afraid that taking this medication put me at risk for developing the disease and as my symptoms progress I fear more and more that I have it. While taking the medication for the years that I did, I never had any side effects or negative reactions and the day that I started to feel the strange feeling in my left forearm, I stopped taking the medication.
So ultimately, despite the fact that I was given a clean bill of health from my neurologist, I am still worried because I am still symptomatic. Furthermore I have found many stories - especially of younger, fit men - who were initially able to pass clinical neurology exams and EMGs before later being diagnosed with ALS. On top of that having found the three anecdotes of young men diagnosed with this disease after taking the same medication that I did, now I have a perfect storm of fear and anxiety. This has brought me to this forum looking for some support and hoping with all my heart that I do not have this disease.