Long time twitcher progressing

[Leavingthanks]

Hello, Thanks for your time.

I have been dealing with neurological issues since 4 years ago when I was abruptly removed from a benzodiazepine prescription. I went through an absolutely horrible time with many symptoms ranging from fasiculations, jerks, muscle weakness, dysautonimia/POTs, cramps, tremors, burning nerves in my whole body, sweats, insomnia etc. these symptoms eased to some extent after 2 years of hard work, daily walking, therapy, diet, etc but the neuropathy has only progressed.

I have had 24/7 fasiculations that started only in my calves for the first two years. Never thought or knew of ALS until my PCP noticed them and referred to neurology. This last year and a half the intensity and location has spread to almost all of my body. Face, scalp, arms, legs, hamstrings/quads, buttocks, lower abdomen is a constant 24/7 almost pop rocks feeling or fly landing on me. Calves are closer to a can of worms you can see. I have now began a pre cramp sensation in my calves and the lower biceps. Not fully painful but a slight weakness like I pulled the muscle from working out. I have noticed a quivering spot on my lower left quad near my knee when I activate the muscle. The quivering starts when I do any kind of squat. I also have a dull feeling around this same knee that runs up the inside of my thigh. Almost like the nerve is dying or losing sensation where the quiver is. My joints are constantly burning in the knees and elbows. But my left knee/quad seems to be the spot where things are the worse...

I have been seen by a neuro and he’s in the watch and wait camp since these issues have been around for years, he suspects cramp fasiculations syndrome or BFS. I could live with this diagnosis if my symptoms were not progressing. I have had Clean bloods, clean head mri, clean clinical with some +3 reflex on my patella, clean nerve conduction all done recently months ago. He told me my EMG is unremarkable but has not posted to my patient portal. He did refer me to a neuromuscular and my pcp also recommended a second opinion at a learning school.

I know time is on my side for clinical weakness not setting in at all with so many years of twitching, I’m just confused as to if this could be a slower progressing mnd as the fasiculations are spreading full body followed with cramping. Appreciate you reading all this and open to any suggestions.

 

[lgelb]

I see absolutely no reason to worry about ALS, and don't understand why you made that jump or how you concluded that you are "progressing" in terms of neuromuscular function. Sounds like your PCP is the only one who broached it at all, ages ago, while on the other hand, cramp fasciculation syndrome, completely benign, is a real thing and can feed on itself. If there is just a lot of ALS fear in your head, then honestly, reducing the fear might reduce the quivering just in terms of muscle tension fighting your attempts to move.

Coming off a benzo suddenly can certainly be traumatic but that was a while ago. Have you had PT or therapeutic massage? There could be adjustments in your regimen that could help, e.g., classical stretch, ballet, tai chi, qui gong, and the like. Sleep and hydration can be a big help as well, along with a "bright" diet to avoid blood sugar highs and lows. Of course, I would make sure that basics like thyroid function and electrolytes are checked every year.

The good news-- you're in the wrong place here.

 

[Leavingthanks]

Yes, in my mind the only thing I have is twitches that correlate. I guess I forgot to say the left knee and left thigh stuff all came on in the last 2 months and my lower torso just started 24/7 this last few weeks. I probably wasn’t clear in my ramblings above. I know whatever is going on is getting worse sadly.

I have done professional massage and pt, hydrate, decent sleep regimen, lower stress, meditation. PCP pushing for second opinion at a learning college is what got me on edge I suppose. I’ll follow their advice and get a second opinion with the neuromuscular and my follow up EMG in the next few months and put this thought to rest. Thanks again

 

[Leavingthanks]

So I had a neurologist appointment. I now have verified clonus in ankles and hyperflexia on both knees. I have increased muscle tone noted on left hamstring, which is my “weaker” side. I have cramping in my left leg when used in any form. Not Charlie horse, more of a feeling pulled and pre cramp. I’ve had a clear MRI and a clear EMG from May this year. But these things have progressed since then. I have no muscle failure but I have left ankle and leg weakness. Fasiculations are still 24/7 on almost every part of my body. My only positives I can see that leads away, is that I’ve twitched for so long, and I have some sensory issues for that time as well. Burning, pins and needles, vibrating. I have lost a lot of muscle mass around my knees and wrists and it’s on both sides instead of one.

I did get an accepted referral to an ALS clinic but it isn’t until July. I have a follow up EMG scheduled for March. Not sure how I should feel. I think I already know my answer as how these things have progressed. Did anyone have just a weird tightness in their legs as things progressed?

Thanks in advance.

 

[Leavingthanks]

Anything to be concerned of?

 

[Nikki J]

Where is the emg and summary? This is just the ncs

 

[Leavingthanks]

 

[rmt]

The impression clearly says there is no electrodiagnostic evidence of motor neuron disease. What else are you looking for from the people in this forum? Work with your doctors to figure out what is going on, but it isn't ALS.

 

[KimT]

Cramp fasciculation syndrome sounds like it matches to both your EMG and your clinical findings.

I know you're off benzos but the treatment for cramp fasciculation syndrome is Valium per my neuromuscular specialist at Shands University of Florida. As long as you're sleeping well, I'd just deal with it. Now that you know you're clear of any neuromuscular diseases, that might make the symptoms less bothersome.