Got diagnosed then got better

[Pipis]

Hello to everyone...I had tingling and numbness in my legs and burning sensations one year ago along with burbing..nervous bladder and constipation...then fascicullations and weakness first in my legs and then a generalized fatigue...the symptoms spread to my hands and the emg finding was widespread denervation so the doctors told me it was Als...I became more and more weaker but then all of a sudden one month ago I felt much better especially in my legs and I can walk again now for an hour and more ..my calf muscles were atrophy but now I'm getting it back...so the doctors now tellin me its not Als cause you cant go better...the numbness in my hand in the morning is still present and the tingling in my feet too...can anyone guess what my condition may be? Is it possible to get better with als ? I also have twitching in my muscles...its all so confusing and on top of that 6 months ago they found conduction block on both my legs along with denervation and I got immunoglobulin for 5 days...now the block is gone though....so any thoughts?
Thanks in advance

 

[Nikki J]

Conduction blocks and ivig sounds like you were diagnosed with MMN at least provisionally after the ALS diagnosis.
that isn’t supposed to get better spontaneously either but it does with treatment unlike ALS so it seems inherently more reversible.

I am happy you are better from whatever you have or had. You really need to figure this out with your doctors Are they considering a viral origin vs autoimmune?

 

[Pipis]

Thanks for your reply..My doctors at this point didn't figure out what's going on and they want to monitor the progress of my condition...I had every test you might think...and the gm1 test for multifocal neuropathy that can mimic Als was negative...also neuropathy don't cause that kind of acute and chronic denervation that was found in my case...I also forgot to say that earlier in my symptoms I had breathing discomfort too that it also disappear along with voice symptoms...the tone of my voice went down at first then it changed range and back to normal...I have no slurred speech but my neck muscles are weak

 

[Nikki J]

just as information for future readers The lack of gm1 antibodies does not rule out mmn. I think about 50 percent of mmn patients have them.

watchful waiting seems reasonable. neurological conditions can be very difficult to diagnose but you are very lucky to see improvement. If this was viral you may never find a test that proves it. viruses can affect motor neurons. An example is polio which is caused by a virus and in severe cases with paralysis is a motor neuron disease from which people can often recover