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SoLiDG

New member
Joined
Sep 20, 2010
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9
Reason
Learn about ALS
Country
BE
State
Limburg
City
Hasselt
Hey,

I don't want to be mr scared nr so much. I'm thinking it's not ALS, but I want to share my story and see what the people with more expierence think!

I have been to a neurologist to start with...

The story started 4 months ago, I felt weak and had some hyperventilation probably.
I been in bed for a few days and after a while I noticed fasciculations... weird.
It started in my legs (can't remember if it was both legs in the beginning).
Doctor didn't make anything of it... i was also still weak and didn't feel good.

I was scared of doing to much standing and walking as my legs would get stiff and tired.

After 3months I went to a neurologist and he didn't see me as potential ALS (i'm too young, 26) OK, sounds good and reasonable as I didn't think it was that... But I do think it's stupid to exclude the possibility because i'm young.
I have the twitches mostly in my legs (non stop) and sometimes in my arms and even my cheeks. Also my arms get stiff and irritating after using it for a while or lying in the same way for a while. and it feels like there is something stretching inside.

I try to walk more and more, but after a while my legs get very stiff and it's not that a great feeling., also my joints are stiff.
I don't have the same fitness as I had, i'm quickly tired, but I can still do things, but I do get more tired.
I went to a neurologist as I said, he did a very quick EMG... just my legs, he quickly said my muscle reaction was slightly slow...that's a polyneuropathy..and emg was over.
I have an apointment with a second neurologist now because I found him a bit strange.
Is there a difference on the EMG that he can for so sure see it's not ALS but polyneuropathy (slightly) and he doesn't need to check more?
And yes, are the way I feel a way ALS could be or not?
Also I have more twitches after I use my legs (longer walks etc)
I have those fasciculations for 4months now, and I do get B12 injections as a trial, and it gives some energy so that's nice, but I probably don't have a shortage (test high but they gave me pills for 2months with b12, so less good picture here).

I don't really think ALS should be too hard on my mind, but maybe I should still not exclude it? I would love some expierenced views on it thx!
 
Nice to communicate with you.
It does not sound like ALS. Your comment about being in bed feeling weak and unwell, then having all these irritated nerves, could well be causedby a virus. They can certainly cause Polyneuropathies, and may well just slowly go away with time. You need to listen to your neurologist. Try not to get too anxious about ALS because that in itself can make fasciculations and twitches much more noticable and worse.
Look after yourself, healthy diet etc, get plenty of rest and forget the ALS fear.

Aly
 
thx, I'm quit calm about it all, but that hasn't had much influence imo :)

I've been feeling better than in the beginning, but the twitches and stiffness/pain hasn't bettered. They couldn't find much.
Altough i'm getting a specialiased better Lyme test at a specialised lab in holland.
Because it resembles alot.
As I have it quickly cold and have cold feet and hands and slight low body tem (35,5degrees to max 36). Stomach also makes some noise now and than and an irratabel bowel (little so its not a problem really).
But the big problem is the fasciculations and stifness/pain/cramps of the legs and the arms aren't fun either (typing hurts in a while).
I found it just a bit distressing the emg was so short to take a good conclusion imo.
 
I now have a little report from the neurologist from my normal doc... But can't make much of it

Border polyneuropathy with the right terms of speed motoric brought about n.peroneus profundus
40m/sec 43m/sec left in the extensor digitorum brevis.
Positive sharp waves left we see as a sign of active failure.
Active demyelination and loss for the left L5 and confirmation id m.gstrocnemius fasciculations left.

what to make of this? it's a translation so not perfect sorry
 
last sentence is better translated like this
Demyelinsation and active dropping for L5 left ..

seeing motoric probelms scares me, but I maybe I shouldn't be so worried..
 
Both from the clinical statement from the physician and that the EMG says neuropathy, I would head in that direction, and away from ALS. You can have "motor" neuropathy without "sensory" neuropathy so don't let the "motoric" term scare you.

Best wishes.
 
I found it so weird he stopped so quickly and he doesn't think much can be wrong because my age.
anyway I'm looking for a second neurologist this week!
 
You're obviously worried about ALS so make sure the next Neuro specializes in ALS/MND disorders.

AL.
 
yeah, let's see what the next one thinks about it.
I wonder what the difference is between polyneuropathie and als as both can be sensible and motoric problems together.
I probably just need to be less worried and hope things get better and definatly not worse!
 
Hi A Polyneuropathy is just a term that means many nerves in various places affected by a process. It can affect both Motor and sensory nerves. It can be caused by litterally pages of causes.
Viral, Chemical, diabetes, and so the lkist goes on.

You have sensory symptoms so it is very unlikely that it would be ALS. I would hope that your neurologist would continue to try and find the cause, as many have treatment.

We as patients have to live with the worry and discomfort of these conditions. I think sometimes the doctors forget about that!

A second opinion is always good, But don't go looking for a diagnosis of ALS. Ask your neurologist tons of specific questiohs, like "Do you think this is ALS", then you will get a straight answer. I always forgot to ask, or was just too scared to embarrass myself. So take a list with you, or someone to the appointment so they can help you if you find it awkward.
Aly
 
thx I definatly don't want that diagnose, but it would be nice if they did something, not just wait for months.
Maybe a dull question but how come sensory symptoms lead away from als and what are they to be more precise? thx
Will i'm looking for my help i want to learn about things!
 
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