Seeking Info on Muscular Fasiciculation Syndrome?

[Roy.FuzzyWuzzyW]

Hello everyone, I have just found this board and I wanted to ask if anyone has been diagnosed with muscular pain fasiciculation syndrome. There does not seem to be a lot of information on the web that I have found. My symptoms are muscle pain, fasiciculations and cramps. I have been going to neurologist for the last two years and this is the last diagnoses they came up with. EMG and nerve conduction studies show that my muscles show hyperexcitability. The other thing is the last three generations of my family have had some type of crippling disease. Two great uncles, two cousins of my father and my father himself. There legs just get to stiff and weak to use. I have the same symptoms appearing and am also having a hard time getting around now. The neurologist has told me not to work or excercise strenuosly. I am awaiting disability hearing now.
The problem I see is the fasciculation syndrome I see are not inherited and are not crippling so I wonder if the diagnoses is right or if this is something else. I am not worried about ALS but wonder about some other disease that also causes muscle hyperexcitability. I go back to the specialist in four months to follow up.
AM I wrong or are some of these fasciculation syndromes crippling? How many of you can work with this stuff? If I walk or do almost anything I am so sore the next day I can hardly walk. Thanks for any replies.

 

[SharonSmoove]

Hi there,

I haven't actually heard of what you have but I definately have fasiculataions and really bad muscle pains in my legs. I dont have a problem with cramping. I am much much worse after exercise.
I have had six years of this, but worse in the last 8 months.
I have had so many different opinions but not really an absolute diagnosis. I have recently given up my job as it was quite physical.
What do you do for pain relief. And how did they come to a diagnosis for you, was it an emg.

Thanks

Sharon

 

[BandersnatchF]

Is it possible that your relatives had ? It's not fatal, as ALS is, but it does cause stiffness and weakness in the legs. Spasticity is also a symptom.

Having said that, it's possible that your muscle twitches are simply BFS, or that they could be something else. If you have no weakness, it's unlikely to be ALS. However, it could be related to what your relatives had; please see a neuro for an opinion.

 

[Roy.FuzzyWuzzyW]

Thanks for the replies- I take baclofen and trileptal plus i have been prescribed a pain medication ultram which I can not take because it makes me itch. Every pain meds I have taken make me itch.

I have been to two major university hospitals and had EMG and nerve conduction studies done at both. Also had a muscle biopsy and DNA test done for muscular dystrophies. My neurologist also did a EMG and NC at the local office.

The problem with the PLS is that it is not herititary either. None of my relatives were given a diagnoses they all said they just had bad legs and left it at that.

I have the exact process that my father had and his uncles and cousins-I am 45 years old and they had there problems start in there fifties. I am a little ahead of schedule I guess. They are all dead now except my father and he does not feel like going and being tested for anything at this point. maybe he has the right idea. They all went from one cane to two canes to walkers.

MY doctors had been going on the theory that it was muscular dystrophy or a myopathic disease but I think after the last test at Emory they have changed course a little bit and it has me a little confused I guess.

 

[LisaQ.]

There are also some adult onset muscular dystrophies that can cause weakness in just the legs as well.

I have a friend whose husband was recently dx'ed with one of those and his symptoms are very similar to what you are describing. I believe he had to go and get a muscle biopsy. He's not using any adaptive devices yet, and he's in his sixties (I think,) and still working. Of course, he is one of the most ornery and stubborn people I know, which, in this case might be a good thing.

I hope that helps,
Blessings,
Sue