Seeking Diagnosis: BFS?

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ZacO

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Going to this appointment, I was sure(hoping, maybe) that the resulting diagnosis would be the same; BFS. It just seemed that my symptoms are so similar to a lot of others on this site. This EMG was done by Neurologist(specialist) and he found some abnormalities; fibs & sharp waves. I have to say the Doctor was very thorough. ( spent 2.5 hrs. at appt.) Asked if he thought this was BFS and he said not likely; symptoms and examination led him to think it's Kennedys Disease( SBMA ). :unsure: (was just coming to terms with having BFS). Anyway, Neuro ordered a slew of blood work ( 16 vials drawn ) and I'm supposed to get in for CT scan(not sure for what, just got call today).I understand Doc said a genetic test of blood can confirm Kennedys.So,it'll take a month for blood and genetic(DNA) results to come back, then back to see Neuro.Anyone else had BFS and Kennedys mentioned as a diagnosis?
 
Doug,I wish you the best in finding out what you have going on. How widespread were the fibs and sharps? Also, my neuro told me he sees people with both that have a benign dx, so keep your head up!Take care,Gary
 
Sorry to hear that :( Even in that worst scenario, SBMA has way better prognosis than ALS and usually does not shorten lifespan. Fasciculations are most prominent in the face (around the chin) and tongue.In your thread "My story" you wrote that doc suspected MND. What was the results of your exam then?With SBMA, the reflexes are not increased, babinsky response is normal, no hoffman sign etc, just no UMN signs.Do you have any other sympoms?
 
Keep your chin up! I have read some info on Kennedy disease way back in the beginning of my journey. It's not fatal. Many of us have diseases which we live with. I have Asthama, Thryoid disease, and now BFS. You just have to put one foot in front of other other and keep going. Life isn't alway easy. Plus, you don't even know for sure if that is it yet so just try take it easy.
 
DougO, I am so very sorry to hear this. TwitchyMD's post confirms what I just read on the internet, that Kennedy's disease typically doesn't decrease longevity, and has much better prog. than ALS. None of this really helps much though, I am so sorry.Has the weakness in your hand (opening and closing your fingers) gotten worse? Any pain other than cramps, did the neuro discuss treatments. Sincerely, JoggingCub
 
DoubleeD: SBMA does not need to be in his family history as women are asymptomatic. However though its MND, its benign when compared with ALS. It may destroy the ability to swallow, speak and move to certain point, but its very slowly progressive and usually the patients are "only" chairbounded".KD can be diagnosed by genetic tests and also clinically to some point, its pure LMN syndrome. There are few diagnostic clues like the hormonal ones (lack of androgen) and typical presentation in bulbar region (perioral fasciculations, tongue midline furrow).Wish you the best
 
Sorry to hear your troubles I have a question how long exactly have you been experiencing these symptoms you said beginning of 2010 like january or feb or later? Please keep us all informed and we wish you best of health
 
I just hope the doctor is wrong and looks like an ass when th results come back, i think telling you a potential diagnosis based on just some issues on the emg is not professional and shouldn't be done until there is enough evidence. I had the same treatment when i went for some sensory issues to a neurologist that was fresh out of university and told me that it looks like MS just adding to my anxiety,when the the MRI came back guess what, he looked like an ass. I hope it turns out to be nothing.
 

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