Since for almost 5 months we don't have new members around here, it seems I am still among the newest (partially) active members on the board.
Well, here is my newbie story with an update: 8 months ago I started to have problems with constant body wide fasciculations, which are most pronounced in the muscles of my legs and feet. I also have a constant fatigue and pain in my right leg which is increasing over time.
All my blood tests came back normal, except for slightly increased HbA1c (it was 6.3%, while the reference values are between 4,5 – 6,0%). During September and October 2014 I was examined by several experienced neuromuscular specialists and university professors and they independently concluded that there are no clinical and EMG signs of MND, so they gave me the diagnosis of BFS. However, some of my EMG results were not completely clean (some large amplitude MUPs were spotted in the muscles of my feet) and the neuros said that these findings are consistent with a mild chronic bilateral L5S1 radiculopathy. On the other hand, according to my neuros, the MRI of my LS spine was almost normal and of no concern (it showed dorsomedial disc protrusion of 4mm at L5S1). Even though I was happy with the diagnosis of BFS, the radiculopathy diagnosis was a little bit strange to me, since the MRIs of my cervical and LS spine didn't show anything notably. But since they are the experts, I wasn't concerned much.
With the passage of time, the pain and fatigue in my right leg increased; I have a constant fatigue accompanied by cramp-like feelings when walking and standing (but fortunately no real cramps). Also, 1.5 months ago I started to have constant fasciculations in my right hand, especially in my thenar area. Then I spotted I have some flattening in my right thenar area and that there one big dent there (I am left handed BTW). Since I didn't notice any weakness or worse dexterity in my thumb, I hoped this was due to loss of subcutaneous tissue. However, when I showed it to my GP, he was concerned and refereed me to see a neurologist. I was lucky enough to schedule an appointment with Prof Orla Hardiman, who is of the leading MND specialist in Ireland (http://en.wikipedia.org/wiki/Orla_Hardiman). This time I was really scared, since as we all know, fasics with atrophy don't lead into anything nice.
Here is a brief overview of my appointment with Prof Hardiman:
- Her assistant neurologist did the usual clinical examination and she didn't find anything concerning. I also showed her the "atrophy" in my right thenar eminence. She said that, according to her, this is no real atrophy, and that even if it is, some noticeable weakness or loss of dexterity would be present.
- After my exam was done, prof. Hardiman arrived in the room. She was very nice and friendly. I first showed her my fasics in my calves (which are constant and very aggressive) but she wasn't impressed at all. She just said: "Oh yes... benign fasciculations...". I also asked her about this "thenar atrophy". She made a quick strength test, and repeated what here assistant said. Then she added: "So I guess you are probably worried about MND? Well... you don't have it".

1. As you know, fasics are common in patients with MND. But we don't look for fascics to suspect MND, we look for weakness, atrophy or change in reflexes.
2. Fasics themselves are no real indicator of MND or any other disease.
3. In most cases, fasics are of benign origin.
4. I have NEVER had a patient with BFS who progressed to MND. And I had a lot of MND (and BFS) patients in my clinical practice.
5. In most cases PALS don't even notice fasics by themselves. Usually their spouse, or someone else is the first one who notice them.
Then she repeated once again that I don't have MND, but for my peace of mind, she will order another EMG within the next couple of weeks. In the meanwhile I also called my neuromuscular specialist who made my last (and the most thorough) EMG. She has more than 40 years of clinical experience and she almost repeated the same words as Prof Hardiman did. Then she added that my EMG was in fact within normal ranges for my age group (i.e. many people around my age have worse EMG results than mine).
At the end of this post I would like to thank Yulia for her constant support and Docen for answering my questions. I would also like to add a few thoughts, mainly intended for (hopefully) new members:
1. You can have many strange and annoying symptoms, but that doesn't mean anything sinister is going on.
2. Never interpret your EMG results by yourselves (unless you are an expert).
3. Believe in your doctors, they are the ones who are experts and who know your complete clinical picture.
4. If, for some reason, you don't think your doctor is good enough, go to a proven specialist, even if you will have to wait a little bit longer.
5. There are many scary stories on the net, but you don't know who wrote them and which information are (incidentally of deliberately) missing. You just cannot know the complete story and let alone identify with it.
crotwitch
P.S. Did anybody else experience constant fatigue/pain in some part of the body? If so, can you please write when and how did it resolve. I am taking Lyrica (pregabalin) for 3 weeks but I don't see any effect.