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ANDMON

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Sep 21, 2013
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Learn about ALS
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Hi,
I’m back after my apps. with a few neurologists, last week of October.
The results are:
-First EMG came back clean but NCV for legs showed a week nerves activity and carpal tunnel for both wrists.
-Second EMG (performed by a very god, respected doctor) report is: NCV good, right arm muscles with myogenic( muscles) modifications, no tongue twitches.
-clean brain and cervical spine MRI
-clean blood test for MG, brain cancer/ electrolytes in very normal range/ small number of platelets/ a high sugar level but not diabetes
-I’m still waiting for CK, LDH to test (as the doctor advised me to wait till the muscles that were pinned to recover for an accurate test).The doctor said: little points to MND but still he cannot exclude it because he saw fasciculation in my tongue and face.
-One neurologist looked at me like I’m depressed after the first EMG and said that all is only in my brain.
-Another neurologist was so nice to me till she saw the second EMG and then she explained me in a polite way that she is not specialized in MND so no reason to try to do something for me. She looked at me like to a walking dead.
But my symptoms are sharper day by day. I have now twitches and muscles cramps in my legs and arms, tongue, soft palate and throat contractions. I feel like my tongue is so spastic that makes a kind of lump in my mouth. I started to have a stupid weakness of legs, arms, intercostal, neck and face muscles. There are days when I barely can do something. I still can swallow liquids and solids. I have also vibrations inside my chest and tremor along to my spine on thoracic area.
I’m very scared and on this point I don’t know which path to take. Please answer me: is it possible for ALS to start in so many parts of the body in 2-3 months? Did someone have the same symptoms in the begging of this monster sickness? Is this bulbar onset?
I thank you to all those will spend their time to answer me as well to those that will ignore me.I understand that we were in my shoes and faced it as well I understand the bitterness from your heart.
God bless us all!
 
Sorry for my spelling but looks like my brain is not working well. I have weak nerves activity in my legs.
Have a good day!
 
Generally, around here if your doc says "little points to ALS", we're going to say "probably not ALS, then".

The thing is, a lot of your symptoms are classic psychosomatic symptoms and not often seen in organic disease. That doesn't make them "in your head", but it does make them likely to feed your anxiety without being at all helpful diagnostically. Having psychosomatic symptoms doesn't make you immune to a condition causing something like myogenic changes, but it does make it a lot harder to figure out!

You have a good stable of neurologists there, and you're being actively treated. That's great! You could use a good psychologist, too, though. Getting a handle on your anxiety is going to be maybe one of the hardest but most important steps you could take. If you just concentrate constantly on your health, your anxiety about your health will swirl downwards like a tornado, taking you with it. It is really, really important to break that cycle.

If it makes you feel better, I lost 2 pts of strength in my tongue to spastic-style weakness without feeling it, and I was shocked with the SLP told me that is how it was. I knew I couldn't swallow very well, but I felt fine. Spastic tongue doesn't feel like much.

You might also find it helpful to read about BFS.
 
Hi Beky,
Thanks a lot for your answer. I’ll try to follow your advice which sounds great to me. God bless!
You are so right. During the second EMG (done by a very good doctor) the doctor was almost angry with himself because of the fasciculation that I have and he saw them with his eyes but couldn't catch any of them in that electric circuit. MY HEAD, MIND AND BODY ARE LIKE I HAVE A COLD OR FLU, I’M NOT MYSELF.
Anyway if this is helpful for someone I observed that massages with coconut oil reduce the twitches and muscles spasticity.
Thanks again for your kindness.
 
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