Salbutamol for Myasthenia

[AtopicGuy]

My EMG results were "Normal" so, despite the fact I have chronic muscle weakness that responds to prednisolone, 0.12 nmol/L of anti-AChR antibodies, and have lost my tendon reflexes, my neurologist says I don't have any neurological condition. I also have no detectable inflammation, so my rheumatologist says he can't help me either. My observations about aspirin and caffeine providing temporary relief apparently count for nothing: I've been denied pyridostigmine.

I stumbled across several articles saying salbutamol shows some efficacy in patients being treated for myasthenia. I have a salbutamol inhaler, which I rarely use because my asthma has been well controlled by a preventer inhaler for many years. So I crafted an experiment to see whether it had any effect on my muscle weakness, especially my inability to raise my upper arms above the horizontal, these days. I looked up the NHS's maximum dose for the kind of severe asthma attacks I used to have: 10 puffs in 5 minutes. I took these while rinsing and swallowing water to ensure all the salbutamol - approximately 10x 100 mcg = 1mg - was absorbed in the lungs or the stomach.

After a few minutes, I developed a tremor, especially in the hands, but I still could not lift my upper arms beyond the horizontal. After 15 minutes, however, my arms raised all the way to the vertical! I also noticed a subtle but significant reduction in pain and stiffness all over. I could now straighten all my fingers, which hasn't been possible for about two months!

The tremor faded into jitteriness and, after approximately 3 hours, all the above improvements had disappeared. The outcome from 1mg of salbutamol was much better than that from 1200mg of aspirin or 250-750mg of caffeine.

Surprised at this result, I sought out literature to see whether the effect was plausible. For example, how many mg of salbutamol are used in CMS treatment, could it work in MG, and does salbutamol wear off that quickly? The links below support all three:

This study found evidence that salbutamol might help MG patients as well as CMS ones:

ncbi.nlm.nih.gov/pmc/articl...

This source says salbutamol has a half-life of only 2.7 to 5 hours:

go.drugbank.com/drugs/DB01001

This study used salbutamol doses between 2mg 3x per day and 4mg 2x per day in CMS DOK7:

pubmed.ncbi.nlm.nih.gov/237...

So that's yet another clue pointing towards myasthenia. Why can't I get a trial of pyridostigmine?! From what I read, it's used routinely for diagnosis in the USA, so why not here?

[Murdochsmama]

I wish I had answers for you, but I applaud your work! Keep digging and asking new doctors, someone is bound to be willing to help! Best to you.

[AtopicGuy in reply to Murdochsmama]

Thank you! I keep on Googling and reading epidemiological studies whenever I have a bit of spare energy. Lots of clues and connections are appearing, which I hope will solve the puzzle. BTW I also get burning and tingling in the front half of my feet; usually at night and not all the time. I don't know whether it's connected to my other condition.

[Murdochsmama in reply to AtopicGuy]

I admire your persistence! I really hope you find answers soon and that they're cheap and easy! Wouldn't that be fantastic? If I come across any information I'll let you know.

[Crochet_fan]

i just wanted to say i sympathyse greatly with the frustration (understatement i know) at not getting a diagnosis and treatment simply because the EMG test was normal even though your symptoms seem to point to a certain diagnosis.

i admit i dont know about the condition you mention or the treatment you refer to, but i relate to your situation nonetheless.

i have read an article (american) that indicates that nerve studies can show as negative despite there being a neurological condition (like for instance peripheral neuropathy which is what i think i may have) because the test can only assess certain nerves and the condition might be affecting nerves that are not picked up up by the test.

anyway..... jusy wanted to say i relate..... and i am very sorry you're struggling so much.

[AtopicGuy]

Thank you for your kind words. I've now been off steroids for 11 months. Every day is a struggle. My GP says he can't help. I have an appointment with another neurologist in three months' time.

I believe the EMG was performed on the wrong muscles. They are weak, but nowhere near the worst affected.