What is going on?

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Lyresa

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Hello,

at first I want to excuse my English as I’m not a native speaker of the English language.

It all started back in 2021 when I experienced sudden cramp-like pain in my muscles during various strenuous occasions.
In January 2022 fasciculation appeared at the sole of my feet, soon spreading to every other area of the body. Usually, these twitches are very short and shock-like and don’t stay the same place. Sometimes I even notice a (sometimes painful) twitching or fluttering movement inside my ears which is very unnerving.

My neurosurgeon found brisk reflexes, an increased muscle tone and extremely heightened levels of myoglobin, lactate dehydrogenase and creatine kinase.
I also experienced joint pain (at the moment I cannot support my body with my left hand because the joint hurts so much) and sudden sharp stabbing pain in various areas of my body. Again, they feel like a small electric shock and can cause jerk-like movements of my e.g. finger or feet.
The mri of the brain, cervical and thoracic spine came back without abnormalities except a slight spondylarthrosis in the cervithoracic junction.

In March the first emg of my left thigh and an ENoG were both normal. I was prescribed with Pregabalin/Lyrica. Around the same time I started biting my tongue speaking or eating. I’m not sure whether this was a side effect of the drug or not but this is not a persisting phenomenon.
In the same month I had to hold a rather heavy object in my arms for a longer period of time. I suddenly experienced a horrible pain in my biceps muscles which persisted the whole day. Even 6 months after this incident my biceps muscles still hurt (although not as strong as before) when I have to hold heavier objects in my arms.
On the top of it, the emg of my right upper arm in May detected small, short and polyphasic potentials and spontaneous activity.

Because the aforementioned blood levels continued to be on extremely heightened, I was admitted to neurology department of a nearby hospital in June.
Again, they noticed brisk reflexes but no pyramidal signs. An lactate-ischemia test and two other emg came back normal. They also conducted a muscle biopsy but I don’t have the results yet. A muscle mri showed two edema in both of my calf muscles.
The doctors recommended that my blood should be tested after one week without sports. Myoglobin was normal after this period of time, but creatine kinase was still too high. I got prescribed with Escitalopram (Lexapro/Cipralex).
In the following months I noticed very worrisome activities of tongue. When my mouth is closed, I sometimes can feel a sort of twitching at the side of tongue. Also, I noticed involuntary movements of the tongue and the jaw. I have the feeling that this again is a drug related side effect although I didn’t find anything related to this.

Since June/July/August muscle jerks (I don’t know whether they are myoclonus or just very strong twitches) also joined my catalogue of bizarre symptoms. For example, while lying down during a cosmetic treatment, I had continuous and severe jerks in knees, feet, fingers etc. The lady even asked if I was alright.
After presenting this issue to my neurologist, she literally said that my condition is a mystery to her and her team.

Needless to say, my fear of ALS is extremely high and had resulted in panic attacks in the past. I have to admit that most of my thougths were dominated with thoughts of ALS during the past months.
My drug prescription probably also tells you that a psychosomatic disorder is suspected. I’m very well aware that I’m a very anxious person but this doesn’t explain the blood levels and the jerks.

This post became lengthier than I wanted it to be. I’m sorry but my nerves are on edge. What the hell is going on with me?
Is this a sign of a early MND or what is happening?
I'm very grateful to anyone who has answer for me. Thank you for your effort.
 

affected

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No, ALS doesn't work that way. If you had ALS you would feel normal, but your body would stop working.
I hope you find answers soon.
We are not doctors, you must work with yours.
 

lgelb

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Lyrica and the SSRI can both cause issues as you describe. I would ask about tapering off the Lyrica and possibly switching SSRIs or to a SNRI. These are matters your primary care physician can help with.

I would also see a medical geneticist or rheumatologist to rule out a connective tissue disorder or myopathy. I don't think what you describe has anything to do with ALS, and the results of the EMG evidently agree.

Best,
Laurie
 
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