I am currently going through something similar to you, and even a few neurologist told me I could have ALS. Mine started with bilateral calf pain and I am talking about extreme calf pain along with constant muscle fasciculations(twitches), Shortness of breath when talking, foot drop, neuropathy, and muscle weakness, tachycardia, and palpitations . I had EMG/NCS and it showed bilateral partial denervation of my nerves with elevated ck and aldolase which meant muscle damage too. This was almost 8 months ago. Today my muscles have atrophied quite a bit and the damage is heading towards my hand and upwards along with my legs. I went to see a specialist at a Neuromuscular clinic at a Teaching university here in my hometown and they believe its very hard to say if I have a motor neuron disease due to a lot of other abnormal testing- many vitamin deficiencies, but they said most likely I don't have ALS. Some specialist have speculated mitochondrial disease or some sort of myopathy of a genetic cause (my twin has the same symtpoms) which I am still pursing.
Right now the diagnosis I am given is protein malnutrtion/wasting syndrome/beri-beri ( a severe b1 deficiency) due to a prolonged diet of nothing but white rice and vegetables. I've testted low on b1, b2, vit D, coq10,. I am having trouble taking the vitamins orally because of My severe sensitivities and severe gut problems, so I have a long road ahead of me too.
Its probably in your best interest to see someone that deals with motor neuron diseases, especially ALS. I would even see multiple specialist that deal with ALS before considering this diagnosis.
Like you, I thought my symptoms were due to CFS and waited too long to see a specialist while the damage got worse. I also saw KDM, but he didn't provide much help or explaination in diagnosing my current issues aside from my CFS issues, along with Dr. Chia. They tried to explain these problems with some sort relation to CFS, but I don't think that's the right way even though their may be a link. I think its best to stay clear of CFS doctors and stick with specialist who can rule out ALS/Motor neuron diseases.
Like others have said, I am not sure the symptoms you describe can lead to a definite diagnosis of ALS. It would seem very premature from the way you describe your symptoms. You can also visit
ALSFORUMS.COM where people with ALS and their family members talk about, in detail, about their condition, symtpoms, what to expect, getting a proper diagnosis and how difficult it can be to get a diagnosis especially in the early stages if symptoms aren't glaring.
Have you had an EKG to check your heart or Echocardiogram.
I hope you get a proper workup to rule-out ALS. All I can say is try not to worry when the diagnosis is not certain. I wasted so much energy worrying If I have ALS and sometimes still do, but Keep your head up until the doctors you see are sure.
Referrals can take a long time, so just a tip: Ask your doctors to put in an urgent referral to the specialist and mention possible ALS diagnosis. This got me in much quicker. What would have taken 6 months to see a specialist only took 1 month when I mentioned How severe my symptoms were along with ALS.