My story after 6 months of twitching, cramps, and maybe some foot drop. Suggestions?

[mydecember1985]

Hello everyone!
Long-time lurker since all this started back in August of '16. I was reading and learning as I came back to the site once a week or so.

I guess I'll just jump right in.

Male. 31 years old. 13 years in the restaurant industry as server/bartender/manager. Just graduated bachelor's and moved over to IT industry.

Prior to all of the below, I had a very minor history of anxiety and I only took probably 4 or 5 Lorazepams for extreme situations.

History of Diabetes in the family when nearing age 40. I check out fine so far.

Current meds:
20mg Omeprazole 2x/day
Fludrocortisone .1mg 1x/day to increase blood pressure. They flatlined me for 30 seconds back in '14 doing a tilt-table test.

________________________________________________________________________
April of '15 - Neck injury to C4-C5 moving a keg

August of '15 - post-exposure rabies vaccination. Long story. Short version is that my cat was eating a bat and I tried to get him away from it and he bit/scratched me. 1 in a million chance the cat could have vicariously transmitted any body fluids from bat to my skin via his mouth, but the doctor said it's a one-way street, so might as well. Bat was too mangled to test.

^^ Very high stress time above. Lots of panic attacks and all-around not a pleasant experience. Paresthesias, headaches, numbness, etc, etc. Could be related to stress or reaction to vaccine.

Fast forward 4-8 weeks and I've got slightly swollen lymph nodes in neck and armpits. They are rather painful. High stress is still lingering and starts causing GERD/reflux. Over the next 2 months or so of doctor appointments, the lymph nodes settle down.

Move ahead 10 months to late July of '16 and I move about 60 70lb boxes by myself. Several trips from storage facility to shed, then into house, then back to shed. At this point, I'm feeling about 90-95% "normal" function. Experiencing worsening fatigue over the last several months.

This over-exertion starts twitches in my thighs on a scale I had never experienced before. Nearly anyone will experience twitches upon over-exertion. This was different. Non-stop for days and tapered off just a bit after a month or so. They're small. Little strands of fibers no more than an inch long just "tenseeee...releeaaassssssseeee" over a 1-1.5 second span. Feel like little inchworms inside my muscles. They happen ever 2-10 seconds. They fire off everywhere. Mostly in my legs, but occasional ones in my shoulders, triceps, wrist area, and buttocks. Most of the time, they're focused to one group, but occasionally I get a fireworks show where one will be going nuts in my leg, another is popping in my tricep, and another one in my back. All at different speeds/intensities. A long night's sleep may calm them about 30-50% but they resume quite rapidly. No observable weakness, but intense fatigue for weeks.

First visit to neuro is in October after a barrage of bloodwork and CT of cervical spine come back normal with minor-moderate bone spurs. Doctor is high-strung. Busier and more intense than any doctor I've been to. Schedules some kind of blood flow sonogram in neck = Normal. EEG = Normal. MRI of brain without contrast = normal.

On to the EMG:
It was mostly concerning my left leg since I had a few repetitive bouts of paresthesias the year before which made it very difficult to drive my stick-shift VW. He also did the left side of my spine in 3 locations.

Here's the issue:
The technician that came in and did the shocking thing with the wires around my toes and stuff took 10+ minutes. When the doctor came to do the needle test, he quite literally would stick the needle in, wiggle it slightly for 1-2 seconds, move to another area, and continue. No asking me to engage the muscle or anything. He was done in probably 45 seconds.

Anyways, came back clean on that leg.

I try one more time to do a follow up when I start getting significantly worsening cramps in my legs. Burning pins and needles. Stiff. Twitches are very fast and so very tiny that they feel like little shocks crawling through my deeper leg tissues. He's still wayyyyy overbooked and after waiting 2 hours, I am ready to walk out when I get a nurse and tell them I have to be back to work. He comes in and says to try RLS treatment with Ropinerole. I have yet to try this That was in mid-January.

Started new job in February and stiffness has mildly subsuded, but I feel that I am getting weaker. Burning, twitching and cramps are focused in my outer-facing shin muscles and the muscles close to the knee joint in my lower thighs. It hurts quite bad. My bones and muscles burn.

In the last 1-2 months:
Exercise intolerance is an understatement. I can lightly jog 50-100 yards and my legs are DONE. My right foot barely wants to lift off of the ground. Trying to pick it up off of the brake to hit the gas is starting to feel like an accomplishment. Feels like my shin muscle is bruised and doesn't want to be used to lift the foot. Rest rejuvenates it over the course of 2-3 days, but it seems like this is getting more frequent and weaker. I can be on my feet for 8-10 hours. It's painful and my legs occasionally want to buckle, but no falls.


My job makes it near impossible to get to a doctor appointment. Mon-Fri 8 to 5. I'm in the first 45 days of my 90-day probationary period. My doctors are 40+ miles away. There is only one neurologist nearby that I'm trying to get referred to. Maybe I can make it up there on a long lunch break or something.

I've been finding solace in the fact that since my twitches have been wide-spread, it's likely BFS or PNH. Maybe MS because of the burning/pain in legs. But this weak foot thing has been getting more annoying lately.

Feedback, comments, and suggestions greatly appreciated. What tests should I request to rule certain things out now that there are more symptoms presenting?

Thanks to all of you that frequent the site and help so many of us looking for an answer.

 

[Atsugi]

Relax, Ocala.
Everything you wrote was almost like ALS but not quite. Especially the foot "drop" that gets better the next day. ALS doesn't get better.
Lots going on there, but I don't see ALS.

 

[Lkaibel]

We are not Doctors, but same things about ALS are just plain true. One of them is as Mike says, ALS symptoms, the significant ones like foot drop or other failures of strength do not improve or come and go. They come, they stay, and they get worse.

 

[mydecember1985]

Thanks for the reassurance, but the burning, cramping, and exercise intolerance have assuredly gotten worse. No doubts there. I can still extend up on my tiptoes. I try that every few days to keep a measure on my strength. No real way for me to measure my toe-lifting strength. The pain and discomfort from my thigh/femur radiates up into my hips and gets annoyingly uncomfortable.

It's just crazy that really just over a year ago, I could work a 12-hour shift at the restaurant, walk a total of probably 6-8 miles while my butt never once touched a chair, come home, cook dinner, watch a movie, and still be wide awake. Now, I go to work for 8-9 hours and sit 1/4 of that time or more... and I fall asleep on the drive home. This muscle/neuro issue is destroying my energy. B12 barely helps, if at all. I've tried eliminating electrolytes like potassium, magnesium, calcium, D3 and other deficiencies as a cause, but to no avail. Glucosamine for my joints seems to do nothing.

At least I can still walk around SeaWorld with my wife and daughter, but I am spent by the end of the day. I am either so fatigued that I can barely stay awake in the 1hour drive home or my foot is so weak I don't feel comfortable driving in city traffic.

I almost never drive the VW anymore because of the clutch. I will miss it, though. It's going back because of the recall. Love that low-end torque though

Thanks again for the replies. The pain, although very annoying, has been somewhat reassuring that it was something other than ALS, but I have heard of those that do suffer bone and joint pain. The muscle burning was something that was pointing me towards other causes. I've had the nearby neuro's number on my desk for over a week. I meant to call today, but work was nuts. I'll keep this updated as things unfold.

 

[lgelb]

Your history suggests several, probably overlapping causes of your fatigue, twitches and pain. I would certainly try the new nearby neuro. But also RLS was not a bad thought. Why not try the rx for it?

Also, I would reconsider the omeprazole. Recent research suggests not a class to be on over the long term unless all else fails.

You can't have it both ways. The job isn't worth your health, and if you have something treatable, that would certainly help you in both your job and family life.

Best,
Laurie

 

[gooseberry]

Gainesville has some good neurologists. I dont know them by name but my husbands neuro initially suggested he go there. May be something to consider.

 

[Sju6262]

It's sounds to me like what I have.i was diagnosed with multifocal motor neuropathy over a year ago.

 

[mydecember1985]

Checking back in. Called the local neuro today asking what information I needed to schedule. I then called my primary to switch my old referral over to the new neuro.

I've got some rather bad stomach issues going on right now, so cutting the omeprazole is going to be hard. I do take sucralfate in place of it occasionally when I run out of my Rx, and that seems to have less long-term damage. I have a gastro follow-up late next week. I'll ask if there's something less potent like ranitidine that may help.

The omeprazole was actually one of my first suspects for the twitching. I know it blocks calcium absorption. Calcium, IIRC, helps regulate potassium and magnesium levels. <<Two key causes of muscle twitches. So I doused myself in supplements to no avail. I've tried sporadically to use supplements in an attempt to troubleshoot it. Heck, I even drugged myself with .5mg lorazepam 2x/day for 2 days straight and it had no effect on the involuntary twitching. I did notice my reflexes weren't as jumpy, but that's not surprising with that stuff.

Gainesville was definitely on my mind in the first months of testing, but I was deep in my senior capstone for college. I was working about 30 hours a week at the time and putting in around 15-25 hours of school. I desperately wanted to go admit myself during the first few scary weeks when I was Googling everything and becoming a hypochondriac. But in the end, I decided to keep my school first priority and just give it time to possibly fade away like most BFS or similar stress-related symptoms do.

I'm gonna call the neuro tomorrow and see if they got the referral. Hopefully, I can get a reasonable appointment.

 

[gooseberry]

You can ask to be put on the cancellation list. That often helps you get in faster.

A lot of gerd meds, but not all, interfere with b vitamin absorption. A healthy diet of fruits, vegetables, and protein that are not processed helps a lot.

 

[mydecember1985]

Update:
I started taking an off-the-shelf leg cramp medication that my wife found at Walmart and thought she'd give it a try for $5. It took about a week or so to notice, but now I am virtually free of the burning, painful twitching almost 3 weeks later. The twitching still occurs, but the FIRE in my thighs has dissipated considerably. The twitches are a little less fierce and have mellowed back out to the twitch-release pattern instead of the "tw-tw-tw-tw-tw-tw-tw-itch" 6x per second attacks I was getting in my thighs every few minutes. I still do have considerable fatigue, though. Exercise intolerance has gotten slightly better. I can play a full 2-3 songs on the kick pedal of the drums, although I don't feel as precisely in control as I used to. My shin muscles were so exhausted before. I could struggle through one song at most and then would drag my foot the rest of the day.

I do still have an appointment with the new neuro on Tuesday (finally), so we'll see where he might want to go from here.

 

[lgelb]

Thanks for the update -- let us know how the neuro goes.