are we missing something?

[mac1724]

my husband has been diagnosed with 'probable ALS'. his fatther was diagnosed with leg weakness due to inclusion body myositis.
he started with muscle fasiculations in his right arm that have progressed to his left arm (mild) and legs (very mild). he is shuffling when he walks and you can see visible atrophy of the area between his right thumb and second finger. his right arm is much weaker. this has been going on since august, 2008.
my question is two fold:
my father in law had been diagnosed with als by 3 neurologists and then the 4th one (after 5  years) gave him the inclusion body myositis. this neurologist reveiwed his muscle biopsy and still confirmed the diagnosis after my husband started to show signs.
i know that i am reaching out far but is it possible that my husband has some other bizarre motor neuron disease that we are missing?
thanks for reading this.

[Lama Chahine, MD]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Without the ability to examine your husband and obtain a history, I can not tell you what the exact cause of his symptoms is. However I will try to provide you with some useful information.

Unfortunately, a definitive diagnosis of ALS is not always possible from the onset. The diagnosis of possible, probable, and definite ALS is based on the history, physical examination, and EMG study. Specifically, which areas of the body are showing evidence of motor neuron damage largely determine if the diagnosis is definite or not; if only the bulbar area (mouth, throat) or only the arms or only the legs show evidence of ALS on EMG or clinically, only time will be able to make a more definitive diagnosis or rule this diagnosis out.

In general, there are what is known as several "ALS mimics". These include, as you mention above, inclusion body myositis, which is diagnosed based on the clinical history and exam (distribution of weakness) and by biopsy. Other ALS mimics include problems with the cervical spine (diagnosed by MRI of the spine), and certain types of neuropathy such as multi-focal motor neuropathy (diagnosed on EMG and supported with certain laboratory tests). An ALS-like condition can be associated with certain types of cancer, what is known as a paraneoplastic process (diagnosed with blood tests).

Continued follow-up with your neurologist is recommended. If your husband has not been evaluated by a neuromuscular specialist, evaluation by a neuromuscular specialist (a neurologist specialized
in diseases of the muscles and peripheral nerves) may be beneficial to him.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.

[millinero]

i am really sorry to have posted this in some one else's thread ,but had no other choice each and every time i try and post a question ...it says forum has reached its question limit...and i have been trying for the past 8 days continuously....so please bear with me and help me with my query for which i will be greatly obliged.
             i am a 27 year old male who has been suffering from constant fasciculations for the past 15 months non stop. it started under my ribcage and within 3 months it was widespread, every single muscle in my body has twitched since then. 2 weeks back i went to see a neuro regarding my fasciculations and he told me to have EMG  and few blood tests. As far as my EMG is concerned it came out possitive with  wider amplitudes and increased action potential....with no atrophy or denervation...and no spontaneous activity was seen and it read ABNORMAL STUDY SUGGESTIVE OF SHOWING NEUROGENIC CHANGES.CORRELATE CLINICALLY
                    My blood work for cal, mag,& pott came back normal....and my thyroid test revealed T3 & T4 within the normal limits but my TSH level was 5.696.Went to my neuro with reports and after seeing my EMG he did few strength tests asked me few ques regarding any weakness that i feel or if i have any problem walking ...and i told him i dont have any such issues....after that he went through my blood reports and told me u have SUBCLINICAL HYPOTHYROIDISM....and thats wats causing these fasciculations.
                    i need to know is this peripheral neuropathy as i get this sporadic pain on my toe...ankle ..calcaneal tendon...brevis muscle...and both my foot are effected...and it usually happen in my sleep...but gets better with painkillers...and this has been goin on for the past 5 years.

thanking you,
Robin