I am drowning. Respiratory onset

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spbalazs

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Hello everyone,

I have posted couple of times here and my old thread is not open for replies.

I have been having:
  • Body-wide fasciculations
  • Difficulty breathing especially when leaning forward or when swimming
  • Issues with speech where I put words in the wrong order, use the wrong words or names, and difficulty thinking.
  • Very evident exercise intolerance on core muscles, went from 100 sit ups to 25 in a space of 1 year. This is with constant workout and being tracked by my PT.
Things have progressed over the past 2 years and most recently:
  • I was drowning in a pool on a holiday. I am normally an excellent swimmer
  • When I take a deep inhale, my diaphragm shakes. This was noted by my professor also.

At the same time:
  • 5 normal EMGs
  • Respiratory muscle function test normal
  • Full brain and spine mri normal
  • Reflexes brisk but not pathological
  • MG ruled out, Isaac syndrome ruled out both based on blood test and EMGs
  • The only abnormalities are high CK and high AST and ALT. (Liver scan normal)
The Professor is not sure what is going on but does not think that it is anything sinister.

He did say that to be 100% sure, we would need to do a muscle biopsy but he did not recommend it as it is “not pleasant.”
I do wonder if I should’ve just gone for it?

He was also surprised that considering my issues, during the EMG test, they did not perform surface EMGs on my breathing muscles.
I wonder if it is worth for me to push for this? After 5 EMGs it does seem a bit silly, I feel.

Interestingly, I have been going for HIFEM (electro-magnetic field that interacts with motor neurons) treatments to strengthen my core muscles.
I tried it 6 months ago and it helped with my core muscle issues greatly and giving it another go now.
 

Bestfriends14

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The professor???

Yes, after 5 clean EMGs and no signs of ALS, it's beyond silly and is completely unhealthy, to STILL be chasing ALS. Please go get professional help for this fixation. You've wasted a lot of your life on a disease you know nothing of, yet are convinced you have. You will never get that time back.

Good luck to you and I wish you help in getting well again
 
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Nikki J

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So multiple normal emgs and also you had normal pfts? And a senior consultant physician doesn’t see ALS or anything sinister.

whether you have more testing is between you and your doctor but it sounds like he doesn’t think it necessary.

we are not going to say anything different than work with your doctor and if you need support for your worries ask your gp.

closing this thread as we really can’t help at this point. Please let us know when the Professor arrives at a diagnosis
 
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