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rickyx 01-07-2016 04:16 AM

concerned about ALS
Hi, I am a 34 years old male living in Europe. I have read the stickies and a good number of threads on this forum. After almost 8 months I have decided to share my problems.

In mid 2014 I started to feel that my right ankle is a bit stiff. I didnít really pay attention to that but I could feel that when I step on my right foot it feels different compared to my left foot when walking outside in summer.

In addition, every morning when I got up the bed and started to walk, I could really sense that something is not right with my right ankle. Anyway, I have somehow ignored it and carried on. In early January 2015 that strange feeling has intensified but still, it was just a feeling (I know, I know itís in the stickies). In late spring 2015 Iíve got a very strong flu and was really exhausted. After recovery I have started to feel stiffness and compression in my whole right calf and ankle.

I took google and typed Ďweakness in legsí and thatís how I learned about ALS. Terrified from this disease I have started to read the forum and self examine myself immediately (bad idea).

I have placed my calves and feet into tangential light and saw twitching - that really scared me as those twitches where in the areas where that stiffness occurred. I was twitching in the past yes, but never looked at it from the perspective that it can be related to some fatal disease.

So in early summer 2015 I have decided to see a doctor with this. He sent me to neurologist - i have also mentioned ALS - he looked at me and said that I must be out of my mind. Anyway, he has examined me physically - checked reflexes, walking, standing, looked at my legs, hands, etc. - standard neurological examination. He said that he canít find anything suspicious but has sent me to couple of exams. I went through EEG - there were some results which I expected (generalized waves of non-specific etyology) - when i was a kid I had an epilepsy episode and there are still some fragments of it in my EEG which didnít go away. Tetany test - strongly positive. NCS - doctor who did the exam told me I have a small conduction problem with my leg from under my knee to my fingers. Electrolytes fine. Muscle hormones OK. Thyroid USG and hormones also OK. Doctor finally told me to come back after half year (February 2016). I went through 3 neurologists during exams and all of them told me that I am very young for this disease (ALS) - I was 33 in summer. I have learned that it affects mostly people with median age 50 +- 9 years.

Based on these findings I have convinced myself that my symptoms are not like ALS and stopped reading about it. Meanwhile my daughter was born and we have been through moving to another bigger apartment to which I took mortgage in February.

However, in October my symptoms worsened (in my opinion) - I have started to feel stiffness even more, I have started to twitch also on my left leg, right foot arc, and upper extremities. When walking I can clearly feel stiffness on various parts of my right calf and also starting to feel some kind of Ďweaknessí - as if I was losing dexterity in my right leg. It is not clinical as I am able to lift myself up on toes and heels and also with my older daughter (30 kilos) on my shoulders (despite I have those symptoms as described above).

I am getting dangerously obsessive about these symptoms and starting to compare my left and right calf muscles symmetry, atrophy where the muscles are twitching, moving abilities, toes, etc. several times a day! I know that ALS symptoms need time to show completely and that is what completely occupies my brain. Waiting what will happen next just paralyzes me. I wish those symptoms would go away and then I just say fine and forget about it, but if one sees them and feel them always - itís very hard to ignore them:( I had 2 panic attacks 10 years ago and I really donít want to fall into that again.

Anyway, sorry for long text. I really appreciate help of this community and apologize if this post does not belong here. My question is very simple - does this sound like ALS progression?


rickyx 01-07-2016 04:36 AM

Re: concerned about ALS
I forgot to mention that I have had brain MRI and neck MRI - all negative. To be complete.

affected 01-07-2016 04:39 AM

Re: concerned about ALS
honey I'm so sorry you are having so many fears, it must be awful.
Your post is full of what you 'feel'. [B]If you read the sticky really deeply you will see that people with ALS do not feel it coming on - they just suddenly are failing to be able to do things.[/B]

I'm going to be really blunt and honest. If you had ALS for the past 18 months you would now be seriously disabled and heading to death. That is what this disease is in all honesty.

Your doctors are smarter than you might think, and they have seen you and would know if you were about to die from an older persons disease, really they would.

Please tell your doctor just how scared you are, because if you will let them, they can treat you for what is really wrong and help you.

The answer to your final simple question is NO this is not how ALS happens.

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