My first and only post to get over it. My Story

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My first and only post to get over it. My Story

Postby JDGTI on August 1st, 2014, 11:39 am

Hi to all,

this will be my only post here and I hope to help you during the process of getting out of you worries.


Last December, I helped my brother-in-law and sister-in-law to move into their new house. That night, when going to bed, I noticed some numbness in my left feet. I was not too much afraid since I was wearing a new pair of shoes.

One week later, numbess still there. I went ice skating with my son. That night, I got numbess in both feet. Might be because I didn't skate for a long time... I started to worry.

Two weeks later, I started to feel some numbness in both my hands. My thumb index muscles was twitching really fast. Like you all did... google twiches and the nightmare starts.

I wen to my doctor which is not really a good one, tought it was stress related and suspect a Carpal tunnel syndrom only and ask me to wear splints for a month. I told her that numbess was more in the cubital nerve zone... and my feet? No help. She told me to see a psychologist to deal with my anxiety.

The psychologist told me that I was not in depression and he suggest me to get help from a specialist for my problem in order to get over my anxiety. Until then, it was impossible to feel better.

I started to have all around fasciculations, constant in my arches and index thumb finger then in both my eyelids and eyebrows.

I had weakness feeling all around.

I saw my doctor again and she sent me to a neurologist for an EMG to test my carpal tunnel. (crazy doctor lol)

My first EMG results were not good. Positive sharp waves, fasciculations. axonal problem in both arms, legs to the spinal cord.
Neurologist sent me for a lot of blood tests and MRI scan.


nothing found in a lot of blood test.
nothing in spinal MRI scan

I asked the neurologist if he could exclude the ALS. He told me no :? , but still it was not looking like it since my clinical exam was normal. He asked my to see him again 3 months later.

Until that second visit, I had all around fasciculations, 24/7 in my feet arches, thumb-index muscle, both eyelid, eyebrows.

to add to the pleasure, I had difficulties to breath, It felt like I had tiny lungs. Then the worst part my difficulties to speak, swallow. My tongue was hard to control. I felt that about 1 and a half week until I breath and control my tongue correctly.


3 months later, I started to feel better. No numbess in feet and hands if I don't do to much effort but still have fasciculations, eyelid, eyebrows, arches etc...

Second EMG, No more positive sharp waves all around :D I got the needles everywere, even in the face. Nerve conductions is still not perfect. I will see him again in 3 months for a third EMG.

Still get fasciculations but the neurologist said to me that at this stage, any terrible disease can now be exclude. My wife was with me abd I started to cry like a baby.

He explains to me that I got a kind of mild axonal Guillain-Barre and believe that now I have the Cramp-fasciculation syndrom has an aftereffect.


Today, after 8 months, my eyes twitch constantly, worst if I closing them hard or tired. My index-thumb finger is still twitching in I move my index. left feet arche is still twitching constantly. All other all around twitched stopped 95%.


My advice to get over it in a better way than me:


1- Think of the propability that you have ALS. 4 persons/100 000. more frequent after 50 years old. There are women and man. Add it all, it may make you smile that you have more chances of dying and you don't worry about it that much.

2- Accept that you have a problem. It may sound stupid, but I took so much time trying to find what I have to find a quick solution. Accept there is something wrong. Accept that you may never know what's going on.

3- Get the right help. Go see a neurologist. Neurology is not a perfect science, but it's the only way to get over it.

4- Test yourself. You feel weak? Get up and move. All those little things you will do and think "hey, with ALS I won't be able to do this..." will help you.

5- Stop trying to find what you have, that's the neurologist's job. Stop coming here! It was frequent that in the exact same minute, I can go to complete reassurance to complete freak out. Not good.

6-Listen to yourself. People around may tell you that you have too much anxiety and it's true. But your anxiety is pretty much there because of what you are scared of and your symptoms. Your central nervous system may be affected. Being anxious may be normal... Go see the neurologist and get the answers you need. Anxiety is not a factor on an EMG.

7-TAKE REST! Go to bed earlier, take care of your sleep. If you can't sleep, ask help to a doctor. Make sure you take care of this one.


Keep in mind that there are a lot of reason for twitching. Mine are worst than in BFS and constant. Print my post, close rour browser and start to live again.


JD
JDGTI
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Re: My first and only post to get over it. My Story

Postby LKP1231 on December 6th, 2014, 3:50 pm

I've only just seen this post and I'm glad I did. You are proof that an abnormal emg isn't a definite end to anything. I'm glad you are ok.
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