looking for help -- can you tell me about the timeline of ALS, also about BFS

[julia63]

All,

new to this site.......am looking for some answers......this is on behalf of my husband.

He has had cramps, twitching,pain, and various other problems, which may or may not be related (such as IBS) for 3 years now. He is a ped. neurologist, so knows about EMGs (and in fact is trained in that as well and does emgs on patients himself). He is terrified he is in the early stages of ALS. He went to a neurologist who did only clinical testing for muscles weakness (not EMG) in 2007 and a year later in 2008 and the guy did not find any muscles weakness that he thought was worth doing an emg for. So, my husband did emgs on himself a couple of times now (last done about 3 months ago) and hasn't had an abnormal one to his knowledge. His symptoms have continued to increase and his general health decline.

When I point out to him that his emgs findings are so far clear and he has not had noticable weakness occur in 3 years, he will say things like, "But emgs can be flawed, and remember sometimes I have trouble swallowing, and find myself on the verge of tears alot....." and stuff like that.

I could be totally wrong which is why I am here to ask people that would know -- but, after 3 years, wouldn't his symptoms have progressed if it were truly ALS? Or not necessarily? He always insists that he could be in the early stages where alot of people don't think ALS yet but he does b/c he knwos all about neuro diseases. I have no answer for him. I don't know how much time should go by before he could say no ALS.......no idea.

I'm pretty convinced he must not have it b/c of clear emg (although he did it on himself -- would that affect it?), BUT, can BFS also have pain and cramping too? Or just twitches? And I realize there are various other things too he could have.

Is there anyone out there who does have ALS who had symptoms for some years before it got worse? I really don't know how to help him -- I keep suggesting he get someone else to do the emg who is objective but he hasn't.......he doesn't think he has BFS either b/c his symptoms keep getting worse (but still no weakness or atrophy that we can tell visibly).

Sorry this is so long.........

Julie

 

[Al]

After 3 years something should be showing up more than you describe. EMG's usually are reliable if done by qualified people. I guess he doesn't really feel qualified. Pain is not usually associated with early ALS but cramps can be. I'd suggest he be seen by a Neuro familiar with ALS and other neuro diseases as well.

AL.

 

[trfogey]

Julie,

The only advice that I can give you is related to the old aphorism "The lawyer that pleads for himself has a fool for a client." You have realized that, as you've noted in your post, and now you need to convince him of the truth. At this point, it is immaterial whether or not he really has the disease because his obsession with it is affecting you and the rest of your family.

I would recommend a two-fold approach. First, he needs to have a complete neurological assessment done by someone whose skills he respects. Perhaps that might be the neurologists that he refers his more difficult cases to. Second, he needs to have a psychiatric evaluation as well, also done by a person whose expertise he respects. Unfortunately, your husband has wound himself into such a tight emotional and intellectual ball of fear, he no longer able to view his own situation with the objectivity that his professional knowledge base requires for him to accurately assess his own needs. A psychiatrist or psychologist may be able to bring that into the light where it can be dealt with.

Good luck to you. I don't envy you having to deal with this.

 

[julia63]

Thanks all. I appreciate your advice and consider it sound. I am afraid it is true my husband's objectivity is not good at all, and I'm not sure what will help but I think all that was suggested it a good first step. Thanks again ~

Julie

 

[Zaphoon]

It looks to me like he could have BFS/PNH (peripheral nerve hyper-excitability). Either of those two could cause the symptoms he is experiencing and the EMG's are usually clean with them. Did he exhibit any upper motor neuron signs like hyperreflexia, Babinksi, Hoffman or jaw jerk?

It is clear he has no lower motor neuron disease as evidenced with the multiple clean EMG's and he may have no upper motor neuron signs. In the absence of one or the other or both, he cannot have ALS.

 

[AndyDJX]

Wow, definitely the first time I've heard of someone who is worried about ALS being able to give himself an EMG... I can only imagine how many times some of the obsessive compulsive worriers would be sticking themselves if they had this ability...

To answer your questions: YES, pain and cramping can be caused by BFS. Actually, it's so common there's is a different term for that just for the folks who have the additional symptoms: BFCS (benign fasiculation cramp syndrome)

And YES, it is highly likely that he would show much more obvious symptoms after 3 years. So clean EMG + no major progression over 3 years + no major weakness= probably not ALS.

As your husband surely knows, there are some rare exceptions, but it's highly unlikely at this point.

 

[julia63]

Thanks again all --

I do not know what those other things are but will look them up (Babinski, HOffman, hyperflexia, etc.) Will see what those are...........


I will look those up and then report more.........thank you for your replies everyone. Very helpful.

Julie