Constant fasciculations in both calves

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Cgracey

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Hello. Thank you for taking the time to read this. I have read the sticky and appreciate how informative it was.

I have been an avid cyclist for 20+ years (I am now 57) and I used to only get calf twitches after a long, hard ride. My kids would freak out when they looked at my calves because you could actually see it - looked like an alien was in there.

As of about 18 months ago, the twitching (both calves) is constant and those muscles are tight, sore and feel weaker to me. It is very disconcerting and distracting. I did see a neurologist a couple weeks ago and she said my physical exam was normal - no weakness. I reported that I do feel weaker lately BUT I can still ride 25+ miles, albeit with MUCH more difficulty, pain and muscle fatigue. As a lay person, the whole question about "weakness" can be confusing. I am learning (from this forum) that weakness caused by ALS is different than finding a 25 mile bike ride "harder" - so thank you for that.

My concern is this: she did order some blood work and an EMG (next month) so now I am a bit worried about these constant calf issues and twitches and the fact that they have become way more pronounced. I don't have twitching anywhere else. Is she worried I may be "developing" ALS? I read somewhere that you aren't really "out of the woods" until 5 years? I wonder if anyone here has read/heard of that time frame? I was under the impression that ALS progressed faster than that but I could be wrong.

Finally, are there any questions I should ask at my follow-up (after the EMG)? I don't want to miss anything and hopefully, put this behind me if all is normal.

Thank you very much for any insight you can provide.
 

Nikki J

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Hi
first calf fasciculations are the most common place for benign fasciculation hot spots although benign fasciculations can and do occur anywhere

the emg is mostly to reassure you and to cover herself

the question of how long before you are ok is debatable. There are as you know conflicting opinions. mostly weskness is the first symptom anyway. Others will say you are ok after 6 months. Five years is an outlier opinion You also have to consider twitching is so very common that some twitchers will get ALS. Was their twitching a precursor? Or was it just coincidence? As a man your LIFETIME risk is about 1 in 350 but your risk at any given time is far less. Your lifetime risk of a heart attack, stroke, Alzheimer’s or various cancers is far far far greater than ALS.

if you have a normal emg following your normal exam I can’t think of anything particular to ask

best of luck
 

Cgracey

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Thank you so much for your reply. I will try and keep my anxiety in control until by EMG and follow-up. All of you that take the time to answer us nervous posters are beyond generous with your time and greatly appreciated.
 

Cgracey

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Thank you for your response.

Final question - does very tight, painful calves combined with major nerve pain in both feet sound like something of concern? I have been told it is Plantar Fasciitis but I have numbness and burning in both feet and that isn't associated with Plantar Fasciitis. I can barely walk from the pain and it makes my legs feel heavy and weak. When I sit, it goes away. Combined with the constant calf twitching, it is worrisome!

I hope to report back with a clean EMG in a couple weeks with hopes of giving other readers some peace of mind - it seems many of us out here with these symptoms are caught in the anxiety rabbit hole and it is hard to get out.
 

Nikki J

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Numbness and burning are not associated with ALS either as it is a disease of motor neurons. Numbness and burning indicate a sensory issue

it may be that your emg ( or more likely your ncs ) will give you an answer but it is very unlikely to be ALS . Please remember that there are many causes of abnormal emgs and if your ncs shows issues that definitely points away from ALS. Good luck
 

Cgracey

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I had my EMG and NCS this morning and unfortunately, both the technician and the neurologist (he was a different doctor/same practice) had terrible bedside manners which has upped the anxiety! Although their website clearly states to ask questions, they were aggressively silent and would only say "your doctor will get the report" in an almost angry voice. They clearly know that patients are VERY anxious for these tests and being yelled at and sitting there in stressful silence doesn't help. Needless to say, now I am extremely concerned they saw something. I have read on here how so people say their doctors/technician will put their mind at ease right after the test.

In the meantime, I am still experiencing a LOT of calf pain, fatigue and twitching along with bad foot pain and numbness. It is all so odd.

Only positive thing was when the doctor put the needles in my leg and asked me to do calf raises and he tried to push them down, he could NOT budge me. At that point he did say "good" or "excellent", but who knows what the heck that means in regards to the EMG! Regardless, I am clinging to this as a sign of strength until my follow-up.

I will report back with (I hope) good news so I can also help future readers with similar symptoms. There seems to be a lot of us out there!
 

Nikki J

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You can not deduce anything from the fact they said nothing. It depends on the protocol. Some places they are allowed to tell you but others they can not which might be why they sounded annoyed though of course the rules aren’t your fault. Bad news is certainly given on the emg table if protocol allows. Both my sister and I were told- my doctor was kind- hers was not unfortunately

you should be able to view the report on the patient portal within a day or two
 

Cgracey

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Thank you for your quick reply. I am sorry your sister's doctor was unkind - that is awful and infuriating. Hope to report soon with my results and I will try hard to focus on the positives of my appointments - mainly that my first appointment 9 days ago showed no clinical weakness!
 

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no clinical weakness - good clue!
let us know, but truly you will have news soon and there will be a conclusion at the end of the report.
all the best!
 

Cgracey

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UPDATE: I am updating this forum in hopes that future readers with similar symptoms will read my posts and perhaps have some piece of mind. Secondly, the above "stickies" are so accurate and helpful so please take solace in the huge effort this forum has taken in trying to explain weakness, twitching, and the difference between the sensory nerves and the motor nerves. You are all heroes.

My EMG, NCS and related blood work are all 100% normal. My symptoms (FYI) are constant (24/7) bilateral calf twitching, cramps, pain, foot numbness and "perceived" weakness in both legs. NO clinical weakness. In other words, I can no longer do the same physical activity I could do years ago without pain and fatigue. I write this because I know that for us lay people, the "weakness" issue can be confusing. And in spite of all these issues, everything was normal!

I will now be chasing down my issue with a Physiatrist (neurologist is convinced it is musculoskeletal) and I will NOT be worried about any MND. I believe my doctor and have faith in the tests. My hope is that future readers can do the same when they get positive results and exams.

Again, a huge thank you for those of you that responded to me so quickly. The kindness of strangers never ceases to amaze me.
 
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