Neurological/Neuromuscular Symptoms for 4 years, Need Fresh Input

superbad

New member
In short, I have unexplained neurological and neuromuscular symptoms, so I developed a theory of a secondary agent attacking my central nervous system(because of almost no findings), which could be Lyme. Could muscle atrophy, cognitive decline, dysphagia(trouble swallowing) and respiratory weakness be caused by Lyme after a period of almost 4 years?

Stats:

- 21 years of age
- 200 cm tall
- 95 kg
- Caucasian
- 3 years of symptoms
- full body affected
- no diagnosed conditions
- no medications
- occasional drinker

I have had myopathy symptoms for 3 years and still haven't been diagnosed. All test results have been negative, including:

- brain MRI
- Whole Genome Sequencing
- Full Metabolic Workup
- EMG x3
- nerve conduction test
- currently waiting for Western Blot Tests, which at this late in Lyme disease (if thats the case) are almost always negative
- Pulmonary function testing - slow inspiration

The Whole Genome Sequencing showed a autosomal dominant variant for nemaline myopathy, which was ruled out by a biopsy. Although the muscle biopsy revealed non-specific findings: variation in fibre size, hypertrophic,atrophic fibres and denervation. The interpretation was mild myopathy with neurogenic component.

The Timeline of my symptoms:
- Progressive Muscle fatigue and minor tremors in summer 2015
- End of 2017: progressive weakness with atrophy, brain fog, muscle jerking, and shortness of breath, trouble swallowing. the weakness affects every muscle: pelvic floor, throat, limbs, possibly respiratory.
- Currently: massive brain fog, confusion, memory issues, as well as all symptoms of before worsening.


I'm seeking input because my case has eluded so many doctors and there are no working theories, I'm currently seeking 2nd opinions. Any help is appreciated. A secondary infection(or something else) seems possible, because it is well hidden and could in theory explain everything and be potentially treatable.
 

David

Registered User
Hi superbad, welcome.

What an awful problem. It sounds like you've had a battery of tests so it must be frustrating to not have an answer. Lyme symptoms are known to change drastically over time if left untreated and become more serious as time passes, and usually include achy joints, foggy thinking, shaky hands (neuromuscular related); the affects on people, like most issues, tend to change, with some experiencing different levels and different symptoms.

Similar symptoms are also found with chronic fatigue syndrom, fibroymalgia, lupus and sick cell disease.

You mentioned: massive brain fog, confusion, memory issues, as well as all symptoms of before worsening.

I'm not sure if you've been tested or discussed with a professional any of the above. You're so young so getting to the bottom of this, which it sounds like you're trying to do, is essential.
 
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