Dyspnea twitching and muscle pain
 

I am a 32y/o male with 10 months of symptoms. This started back in March where I had a lump in throat feeling and swollen tonsils which were removed. I then started waking up with morning headaches and eye floaters. Soon I had widespread muscle pain and twitching which was worse after exertion but sometimes still while inactive. By June I began to have shortness of breath even during the day and right hand pain after using it. My bloodwork which was extensive has all been normal except slightly low Costisol and high HSV1 (Herpes 1 though don't think this can explain my symptoms).

I have had 3 EMG/NCS tests (one by a regular neurologist, one by Mayo Jax, and one by Columbia ALS center in NYC). Despite my symptoms, all of these were totally normal in every muscle tested - the EMGs didnt pick up anything abnormal, not even any fasiculations. The tests were rather extensive across legs/arms/tongue/hip/paraspinals/thoracic area. Spinal tap was also normal.

None of these symptoms have really improved at all over the past few months - I have muscle pain, twitching, and sever shortness of breath. Heart was normal, pulmonary tests were low 80s (not great, but unchanged since June and supine position was only ~5% lower than sitting). My inspiratory and expiratory muscles (MIP/MEP) were ~50-60% of normal. I also had a cardio exercise test which found notable reduced tidal volumes (60% of expected), reduced peak O2 pulse and potential poor oxygen extraction. CK generally have remained normal. Otherwise my tests from endocrinologist and rheumatologist have been unremarkable.

With normal neuro exams, clean EMGs, and my worse problem being respiratory doctors are lost. I was worried about ALS but seems to be unlikely given the tests and rarity of respiratory onset in a 30yr old.

Any advise/thoughts? Thanks

Hey there,

Are you still on here mate? Would like to connect.

Still here! And still no answers unfortunately

I find your story fascinating as while mine not exactly the same had similar component of a herpes family virus precursor.. I had Shingles in July started with lesions In left groin region and then it butt crack leading to bilateral neuropathy in my calves. Resolved after treatment then four weeks later started develop neuropathy in the right hand that progressed to a full body neuropathy followed by thethe fasciculations everywhere. I had two negative EMGs and NCS by neuromuscular specialist’s. Nothing showed up extensive lab work. I’m convinced it’s the immune response to the virus.