Still Kicking With MND: Stay Strong!

[RainCat]

Its still not turned into MND So i thought i'd put up my latest video just for giggles, and after 7+ years of this i'm still alive and kicking even with 2 not so clean EMGsStay strong and keep smiling

 

[Shawn87]

That's awesome. Thanks for stopping by and letting us know that you are doing well.

 

[yelflowhunter]

thank you RainCat for this video. I love your videos )

 

[XinaMae535]

Hi Raindog, thanks for sharing your video. I am also very happy that you are doing well!I have to say, I have not had twitches like yours. Mine switch to different places within seconds, it is rare that I have twitches in one spot where I can even catch on video. Did you start out like mine and then did it get the way you have them now over time? Also, you mentioned in the video commenteep tendon reflexes absent at knee and ankle and Chronic denervation and motor neuropathy mentioned on 2 EMGs.So you were diagnosed with all of that? It sounds very scary to me, but I have not had an EMG yet (I am too scared too, I am just a big scared mess, have good days and bad).PS - you seem like you have very muscular legs! Do you exercise, and if so, does that make any of your symptoms worse?

 

[FernFinnegan]

Raindog (or anyone else) -- Two questions -- 1. do you know the difference between PNH and neuromuscular hyperexcitability?2. do you know the difference between hypertrophy and pseudohypertrophy?I can find little info about either neuromuscular hyperexcitability or pseudohypertrophy and am all done googling. But, I do think I have both and one thing I found is that pseudohypertrophy is common in neuromuscular hyperexcitability. And the 3rd... million $ question--- 3. What causes any of this bs?

 

[FernFinnegan]

Thanks RD - just trying to make sense of all the nonsense that is bfs. My arms have changed texture and are much more fatty while my hands and feet are skin, tendons, and bones. No real weakness that I can tell. Middle back pain associated with quivering/trembling-like twitching shortly after lying down and first thing in the morning is my latest thing. We all seem just a bit different and yet the same. Good day to you!

 

[XinaMae535]

Raindog - thank you for all of the valuable info!Yes indeed, we have differences, but are really all the same. I have one new symptom every month, while another one goes away. Example: My hands are looking more tendon/bone/skin, while my arm weakness has gone away. I have just now started getting these myoclonic jerks, but at the same time, my leg muscle tension as been better. Oh the wonderful mysterious world of BFS (including PNH, cramping syndrom, globus, etc etc etc). :crying: Wishing you all well!