Twitching all over body

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WorriedCrazy

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Hello Guys;

I don't know where to begin...so I am a 37 year old male from Australia. 1 year ago whilst I was driving home from a trip to a waterfall I experienced an electric shock like sensation on my right foot on the pedal. It had alarmed me at the time after I Googled it and thought it was MS. At the time I had a whole cluster of symptoms: pins and needles sensation on lower limbs, enlarged cord like veins on lower limbs with redness and pain. Then Of main concern was my Left foot causing me to slip every 10 or 20m as I walked at a shopping centre and there was a minor height change or gradiant (2cm)- this continues on and off till today. I saw my doctor and all roads were leading to a diagnosis of an autoimmune disorder.

For the past 1.5 years I have also been experiencing a whole cluster of symptoms: extreme dry/red eyes, pins and needles sensation all over my body- including tingling on face, skin lesions, afew mouth ulcers and ear pain. They come and go and the pins and needles sensation/crawling under skin sensation migrates from body part to body part. All my treating physicians have been treating it as an autoimmune condition (Behcet's Disease). I have been put on Colchicine 500mg daily and Prednisone 5mg daily. I too was convinced that I had an autoimmune condition.

2 months ago I also developed asthma like symptoms. I had a tight chest. Then directly after that I was diagnosed with Covid 19. Post Covid I had shortness of breath and astma like symptoms again. On 2 occasions as I was going to sleep I also experienced a Laryngospasm type sensation that lasted a few seconds in my throat. My GP put me on an inhaler and I no longer have the asthma like symptoms. I also did not experience any Laryngospasm type sensation after that. Although, I still get the tight chest feeling in mornings which may due to reflux.

Then last month I experienced a really bad episode of low back pain. I had bent down in an ackward position and when getting up I was stuck. I had to remain in same spot for afew seconds before I could get upright. Eventually I was able to get back up and resume normal activities. Even though now I still get dull intermittent low back pain.

Fast forward to this month: I had the usual symptoms again- right ear pain, dry eyes, joint pain (mainly wrists) & oral ulcer. I was told to up the predisone to 10mg which I did.
But I also began to experience painful eye muscles and twitching on both eye lids- I use to experience twitching on one eyelid in the past when I was usually stressed- so I didnt pay much attention to it. But this past week it was both eyelids twitching on and off and although the duration wasnt long the frequency seem continuous.

Now to the thing that has alarmed me the most and sent my anxiety over the roof: Last night I began to get muscle twitching all over my body- it would migrate from quad to arm to eyelid to face etc. I use to have the odd muscle twitch in my quad on and off while sitting at my desk for past year but I never thought of it much. I attributed it to being de-conditioned- as I hadn't stepped foot in a gym for a year and was mostly sitting at home. But the intensity and locations of my muscle twitching increased significantly yesterday. At one point I thought my tongue had twitched for a moment but on close inspection it didnt look like it was twitching- my mouth was very dry.

So I am thinking was all the twitching in my eyelids, quads and now all over my body the begining of ALS...I read somewhere that ALS initially presents as subtle twitching. And coming back to the episodes of me tripping while walking- was this episodes of drop foot. I can however walk on my toes and heels and move and curl them. They also don't seem weak.

I have rung my neurologist and she has arranged EMG studied for next week. But I am a huge mess at the moment. My anxiety is over the roof. My sisters friends dad died from ALS and I know how horific the disease can be. Googling ALD diagnosis I came across a study which said that sometime EMG studies are clear yet the person devleops ALS after 70 months! So my anxiety is driving me mad.

I am basically here for guidance/help and to see if anyone else's symptoms started like mine.
 
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affected

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Hey worried, really this is not sounding anything like ALS, and the twitching is the least of your concerns really.

Have a real good read here as it will help heaps.

I see you are in QLD - if in Brisbane are you going to the Royal Brisbane MND clinic for the EMG? My husband was diagnosed there.

Stop googling, as you surely realise you can't just believe every scary thing that is thrown out on the internet?
My guidance/help is: stop a moment, breathe, and pull yourself into a quiet space. You are spinning yourself out, not your symptoms indicating this fear. Twitching means absolutely nothing. ALS is about failure, not all this string of 12 months of stuff you have happening. No diagnosed PALS here began anything like you, what great news!
 

lgelb

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Steroids such as what you are taking for Behcet's can cause twitching. So can Covid.

A second rheumatology opinion as to whether you should be upping your steroid dosage or trying another kind of medication, might be in order. There are many newer drugs.

It might be worth seeing an orthopod for the continuing foot problem, which could be related to the Behcet's or a localized nerve problem, but I don't see any reason for worrying about ALS.

Best,
Laurie
 

KimT

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Laurie's advice is good. I agree a second opinion from a rheumy would be a good strategy to get to the bottom of this and maybe find a different combination of drugs.

Long Covid can cause all kinds of things, including neurological.

Your EMG will check for many things. Please try not to worry. Worry will only make your symptoms worse.

I wish you all the best. Feel free to come back once you've had your EMG. You can tell us what the doctor says.
 

WorriedCrazy

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So I had a nerve conduction study and EMG done by a neurologist yesterday. I told her my concerns about ALS. She was adamant I dont have it.

She however only checked my left foot, leg and above knee. She then checked my right finger and right biceps- only the areas of my consistent twitches. When she put the needle in my bicep she told me to relax the arm because she got alot of noise. I felt like my bicep was relaxed though…nevertheless she said it was normal.

For the past few days the intensity of the intermittent whole body twitches has seemed to go down alot. The twitching in my right thumb is also not as intense/regular- but faintly still there at times.

However, my left lower eyelid has now gone from intermittent twitching to consistent twitching.

Then I came across this research paper. The onset of amyotrophic lateral sclerosis

There have been cases of people having an episode of twitching which went away and who had initial clean EMG’s. They reportedly were diagnosed with ALS 18 months later…
 

affected

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Please stop.
Go take this all to your doctor.

You have been cleared of ALS and we truly wish you all the best. It is now your choice to follow this obsessively, but you will have to do that on a BFS or Health Anxiety forum. Bringing this back to the terminally ill is poor form.

Please get help and live a wonderful life.
 

lgelb

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These two cases from a 2006 paper both presented with pain +/-tingling only, not clinical weakness. And they were diagnosed 18/20 months later, calling the notion that they had silent ALS earlier into serious question. In short, don't waste a moment of your time on these.
 
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