Grief and fear

[fmonroe]

In that terrible limbo period of waiting for a possible diagnosis. Barium swallow scheduled in a few weeks - trouble swallowing and loss of taste/metallic sensation in mouth. Progressively weaker muscles across the body and twitches in areas of this same weakness. Difficulties with fine motor control due to stiffness in hands and the beginnings of speech difficulties in a clumsy, slow tongue with cheek biting. I'm 26. I know this would preclude most people...but symptomatically not looking great. First EMG dirty but not diagnostically definitive ALS. (Increased insertional activity bilaterally in upper extremities an +1 fibs left leg). Just tired. Just scared. Just sad.

Previous thread here: Can you still undergo surgery

 

[ShiftKicker]

Hi there-

Do you have a particular question? We can maybe help give answers to questions not provided in the Read Before, but are limited otherwise.

 

[lgelb]

If the EMG did not show abnormal motor units or recruitment, that's actually reassuring as regards ALS.

 

[fmonroe]

That is comforting. I got the EMG pretty early in the diagnostic process (abt a month after symptoms started). The weakness has progressed however (as well as the twitching) and I'm not confident a second EMG would be as innocuous, unfortunately. I'm holding out some hope but it feels a little impossible with what I know ALS to look like, even given the 1-2 per million incidence rate of my age group.

 

[fmonroe]

Just got the all clear from my barium swallow -which really puzzled me. I've been having oropharyngeal swallowing difficulties for months now. Realized in horror that my GP didn't order a modified barium swallow, but a regular barium swallow. Is the standard test at all good at detecting oropharyngeal issues? Should I call my ENT and explain that something is amiss?

 

[lgelb]

The standard test is more about the esophagus than anything else. If you needed the other segments tested, your physician should have been aware of that, so certainly call and get clarity.