Diagnosed with Benign Fasiculation 13 years ago
 

I've had muscle twitching in my legs, mainly calves for over 15 years non stop. I had an 3 EMG's over 12 years ago all normal. These EMG's were all after I was twitching for maybe 2 or 3 years. Was diagnosed with benign fasciculation syndrome. The last EMG was done at John Hopkins and they said it was not a large fiber neuropathy because EMG was normal but possible small fiber or distal myopathy but I never went back for anymore test's, I just lived my life normal for the past 15 years since it knew is wasn't going to kill me.

Fast forward to June 2015 when I decided to have my left knee replaced because it was really bad from all the sports injuries I had over the years. By the way I'm 64 and was in half decent shape, 6'2 weight around 195, so I'm where I should be weight wise I think. Anyhow...I noticed back around July Aug while I'm trying to recover from this knee replacement my legs felt heavy, thought it was just the lack of exercise and the surgery and pain pills I was taking. My legs fascis started getting worse, especially my good leg, the one that was not operated on. Getting fascis in the shin, down around ankles, calves are twitching more than normal. I've been using A cane to walk because the knee just does not feel strong and I'm having a hard time rehabilitating it. I just felt like I wasn't gaining so I went to GP and she said it looks like I'm losing muscle bulk in good leg calf muscle and she sent me to Nero. Had one visit and thinks I have what he described as a peripheral polyneuropathy since my blood tests were all normal. I have to go back in 2 weeks and they scheduled anther EMG not due until March, can you believe that ?

Anyhow, I'm new to this forum and just wanted to get some feed back on what people feel with peripheral neuropathy ?

My ankles feel like they are sprained at times when I walk when they are not, I get strange feeling up into my calf muscle pains like its going to cramp but never does. Bottoms of my feet feel like I'm walking on sand and pebbles. they've been like that for years but not this bad. I can do heel and toe raises but it hurts to push off from my toes due to the fat pad atrophy from all the years of running playing tennis and hiking I suppose.

I feel as though I cannot build muscle in my legs anymore even though I go the PT 3 days a week for my knee.

Would PN cause muscle tone loss ?

Certain types of PN can cause muscle loss. But, so can a host of other things.

I have small fiber neuropathy which doesnt really manifest like what you are describing. I get burning, prickling, numbness, sensitivity to temperature, just to name a few.

I would say get other tests as well, vitamin deficiencies, thyroid and more specific neuropathy tests (biopsy). unfortunately you may have to go fishing a bit.

I have had a bunch of blood testes can't remember all of them CBC count, B12, CK , RF, SEP, Lyme and a few others all normal. I do take a small dose 25 MCG of Levonthroixide(SP?) for an under active thyroid but they tested that and it was OK.

It just seems odd that my symptoms got really bad about a month after the knee replacement. Its almost as though my immune system kicked into high gear which it would to help heal the knee but it caused muscle fasics and muscle aches and pains in my good leg. Of course I had to use my good leg a lot more until I was able to walk OK on the replacement, so maybe I just over stressed the good leg. I would have thought using the good leg more would have made it stronger, not weaker ? That's the part that puzzels me ? I'm getting up there in years but still I should be able to improve muscle tone ?

Well, you wouldn't be the first that I have seen on this forum of people developing a nerve related issue after a surgery like that. It may take some time to figure out but keep asking around you may uncover some possibilities. Maybe it will just go away over time as well. Knee replacement is pretty rough on the body.

Hi Pennbem:

I have had pretty much the same symptoms as you, but I went through the twitching, cramping, weakness, and then on to the pain in about 6 months rather than 15 years. Fortunately for me, the weakness only lasted a brief period of time, not long enough for significant atrophy to appear. Eventually the weakness went away, the twitching and cramping are pretty well controlled with Gabapentin, and the pain has mostly been "manageable". A year and a half later I still have no formal diagnosis, much less any idea what the root cause is.

These things are unfortunately very unpredictable, difficult to diagnose, and difficult to treat. Some times they flare up after some type of physically or mentally stressful event, then calm down again. Hopefully, your neurologist will be able to find a cause and treat it. If not, hopefully it will settle down on it's own. In the meantime, exercise to the extent you can, improve your diet and reduce your stress levels. You may also want to start on some supplements to support nerve health and nerve healing. You can find more info on that in the "supplements" section of the forum.

Hopefully things settle down for you