2016 GBS / 2023 – myopathy or neuropathy?

Hello, I am sharing my story in the hope of advice or opinion from someone with similar experience:

I am a 23 year old male.

In 2016, when I was 15, I suddenly developed paresis of my left leg – no trauma, just at school I felt that I could not move it. On the same day I had slight muscle pain in my shoulders and legs (but I attributed it to the fact that I was training in the gym), I did not have a fever, but 2 weeks before this symptom I had stomach pain. On the same day – the sensitivity of my right leg to pain and temperature was reduced. My hands were not affected at all.

I was admitted to the hospital, they did a brain scan, cervical and thoracic vertebrae – everything was clean (they suspected a fracture of the 12th vertebra, but the neurosurgeon denied it, with no evidence of lesions, fractures or inflammatory processes. The lumbar puncture was also normal – normal pressure, normal levels of protein, sugar, cells, I had difficulty urinating for the first day or two. Later, they also did an electromyography, which showed signs of Guillain-Barré polyradiculoneuritis, but in a very mild early stage. They started treatment with immunovenin, corticosteroids, antibiotics and anti-inflammatories. After discharge, they did an MRI of my head and chest, the head to rule out MS, and the chest to check for demyelination, and everything was normal there.

After a few months, I recovered almost completely, my left leg is 3-4 cm thinner than the right, but as soon as I got home from the hospital, I started training at home, the next year I was in the gym and training hard. The other thing that remained after that was the reduced sensitivity (especially to pain and temperature) in my right leg. From then on – until 2023 – I led an active lifestyle, trained and felt completely fine.

In March 2023, after a series of viral infections for several months and the use of testosterone, I literally woke up one morning with the feeling that my muscles were “soft”, as if they had leaked. I lost muscle tone almost everywhere, I can still contract my muscles, but they do not maintain the usual tone, literally a few days before the problem appeared, my muscles were very developed – large dense muscles with deep separation. I felt loose and weak when lifting bars, dumbbells and training with machines in the gym. The other problem that appeared was that my diopter jumped from -2 to -3, but so far the vision problem has not It progresses. I have been hospitalized several times in hospitals, they deny that the weakness is from testosterone/drugs, they deny that it is related to Guillain-Barré syndrome, I have about 8 EMGs, half of which show evidence of muscle damage, in which muscle they put the needle, the problem is visible. When the EMG does not show evidence of myogenic damage, they interpret it as radicular or chronic denervation/reinnervation changes. 2 years later the weakness is most pronounced in my wrists/fingers and down into my feet/ankles, with atrophy in the soft pads of my hands and atrophy more in my right leg. Sometimes when walking I start to limp more with my right leg (which was the stronger one over the years) and even sometimes the foot falls when walking, sometimes there is also pain in the foot or right wrist and elbow. I also have problems with my joints, they crunch, crackle and feel unstable, according to the diagnostic tests I am with initial degenerative changes and protrusions in the cervical thoracic and lumbar region, these protrusions were missing in 2023. on the imaging diagnostics. Sometimes there are better days when the muscles do not get tired so quickly, there are days when the muscles respond well to training and pump up, but shortly after the end of the training they soften again, i.e. as if the muscles do not have enough excitability to stay tight.
I react positively to physiotherapy with water procedures – tangentor, magnet bath, underwater gymnastics and exercise therapy, the bad thing is that the effect was short-lived, the other thing that helped me a lot recently is laser therapy + massages and B12 intramuscularly. They also did genetic tests on me and the only thing that was found was Gene
(transcription)
Variant
Class of zygosity
ITPR3
(NM_002224.4)
c.4129G>A
(p.Glu1377Lys)
Heterozygosity
Variant of unclear clinical significance
Disease name
(#OMIM)
Inheritance
A.D.
(VUS) – Charcot-Marie-Tooth disease, demyelinating, type
1J (#620111) – {Diabetes type
1, predisposition to}
(#2221000)
AR
They denied it was genetic, and we have no one in our family with neuromuscular problems.
It is important to mention that creatine kinase is normal – it has been tested many times.

I have been looking for a diagnosis since then

Is there anyone here who has encountered something like this? Let’s start with viruses, sudden loss of muscle tone, lack of pain, lack of objective problem on MRI or cerebrospinal fluid?

I would appreciate any opinion.