Explaining Differences Between BFS, Issacs and PNHE

[LindsayCohen7]

Anyone out there able to explain the differences? I'm just curions. From my understanding from this site, myokymia basically means twitching of the muscles, which is BFS. But neuromyotonia is different somehow, and includes Issacs? Can BFS be a tamer version of Issacs? Or is it different because BFS usually doesn't show EMG changes and neuromyotonia does? And where does PNHE fit in?So many terms are thrown around, and I'm trying to explain some of this to a friend who's going through a rough time with sensory neuro symptoms that could be lyme, or this, or lots of other things. THanks!

 

[BarbiePetals]

I asked this same question a few days ago. I don't understand the difference either. I know Issac's causes muscle stiffness where for instance say you can't release your hand off of a coffee cup. As for PNHE, I was told it's the same as BFS but when I brought it up to my neurologist he said no they are not completely the same. As for myokymia, I have read that it's slightly different than fascilations. I really don't understand any of it. To me a twitch is a twitch no matter what name you give it.

 

[LindsayCohen7]

There used to be a link on this forum explaining the differences between them. I think I read it years ago, before I really understood what BFS was, and when my symptoms were mixed in with the virus that started all of this. There is a BFS vs. Issacs breakdown on the board - and I think neuros can diagnose Issacs and it's treated, as opposed to BFS which is a dx of exclusion and we all just try whatever we think might work...that's the extent of my knowledge.

 

[LisaQ.]

Well, I am not the expert, Stevepaul always was, but I'll give it the old college try. Isaacs and neuromyotonia are the same, but they are more severe than bfs and are often treated with medications such as anti-epileptics. Either condition can cause fascics to show up on an emg, ( and as we discussed in another thread recently, there can be emg/ncv abnormalities for lots of different reasons-nerve entrapment/tunnel syndromes, neuropathies and radiculopathy being a few examples.) Myokymia seems to be descriptive of a type of fascic that is more coarse and undulating and resembles worms crawling under the skin. This is COMMON with bfs. Isn't there still a sticky about these conditions? Or check the links section, I'm sure there are articles and web pages concerning pnhe, neuromyotonia, bfs, etc. Blessings, Sue

 

[LindsayCohen7]

Thanks LisaLM! You always do a great job explaining. So our fasics are benign, even if they are of the myokymia type and a giant pain in the @ss. The link doesn't work anymore, and there seem to be a lot of terms tossed around. Just trying to make sense of it all! I've always been one to need to know EVERYTHING, and this condition is no different. I'm at peace that this is what i have (let 's hope I stay convinced!), but I'm just trying to figure out the details. My son had strep impetigio and I did the same thing (trying to figure out if it was strep, staf, MRSA...) and drove my husband NUTS. He said "he's on the antibiotic, don't worry about what it is or what caused it." Wish I could be so laid back!

 

[LisaQ.]

You're right, the link does seem to be down. Perhaps Gary or Bill can investigate what is going on with that for us. You could also pm stevenpaulo and see if he answers you. I used to be of the mindset that needed to know all the answers, too, until I learned that there ARE no answers, only more questions. LOL. So, I've made peace between the uncertainty, and those things I know to be true. There is really only ever an illusion of control, anyway. Gosh, look at that poor soul who was blessed to miss her flight on fated Air France plane, then got killed in a car crash. As Gump so eloquently said, "Life is like a box of chocolates..." Blessings,Sue