36 and diagnosed with mnd

[Dignify]

Hello, my name is Nathan. I am 36 yrs old with a beautiful wife and 3 wonderful children. From all the research I have done my case seems to really be off the " norm".

About 7 yrs ago I noticed that both of my calf muscles were twitching ( now calling them by there real fancy name fasciculations). These were always painless and only accompanied with some achiness.

Fast forward 5 yrs, still have the fasciculations in the calf muscles. Now at this time the fasciculations start in my left shoulder and over a short period of time spread throughout my entire arm and upper left portion of my back. Again, no real side effects at this time. But it has become bothersome so I go to my family doctor which does some blood work and refers me to a physical medicine Dr. I have an emg, MRI of the brain (all normal)...yay me.

Then a few months pass and these fasciculations become a little more intense and bothersome. I go see a neurologist and she does an emg and says the fasciculations are global and that I have bfs....yay me. Fast forward another 4 months and I start getting painful spasms in all the muscles with the fasciculations. Which have now spread across my chest and are working there way down the other arm. Kinda getting a little worried at this point so I go back and see the first Dr. I start taking gabapentin ( I do not recommend this) and have an MRI of the neck. It is normal....yay me.

And then about 4 months ago I started noticing some atrophy on my thumb and left arm. See first doc again( waste of time) then just last Thursday sept.14 2017 I see a neurologist at Ohio state. To cut this a little short he diagnosed me with mnd....OH $#&+!!!!!!!! I have an appt. for another emg to confirm. Anyone else had these symptoms that led them to where I am at?

 

[lgelb]

Nathan, how long ago was the last EMG? Do you have the report from that one? Diagnosing you without a recent one isn't really best practice. Regardless, I would get a second opinion at another center, as we always advise anyway.

If you do have an MND, it's obviously slow-progressing and seems more UMND which would fit...but let's not get ahead of ourselves.

 

[Dignify]

My last emg was November of last year. I have hyperflexia on my left side with some atrophy and I was told I had trigger thumb about a year ago and was told it wasn't related. I am starting to lose certain movements with it now, like opening it up to grab things. Occasionally I have some trouble swallowing and the neuro said he saw something with my tongue. I am guessing they will be looking for a shift in my next emg. They definitely scared the hell out of me by sending in a counselor and a referral to a speech therapist. I have to wait until october.3 for the next emg and see if I get a confirmation but I guess with what this neurologist saw was enough for him to diagnose me.....idk. Time will tell I guess. Thanks for the response.