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Mulino Bianco

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Ever since I was a kid life did not give me an easy time.
I was weird looking and curious enough to get kids to pick on me in kindergarden.
Due to frequent fights and pshyical trauma I developed a speech problem that made sure I get molested and bullied in school, in my teenage years I got a beautiful pair of braces for my teeth and acne all over my face to make sure I get all the girls. At age 12 I would spend hours looking at street from balcony and thinking of when I would finally get the strenght to throw myself.

I was an atheist but I started praying and became believer, that got me threw. In high school I had an opportunity to start from a clean start, it did not last for too long though. I was using many chemicals to get rid of those acne and it seems to did harm to my hormones and fertility. It seems that my chance of getting a girl pregnant are very slim along with a terrible libido.

I started going to gym in an attempt to build up but since it did not go too well I started doing steroids which finally gave me results I wanted. I got into shape and I tought my life is going to go well now.

I was wrong, during college I hurt my arms and could not heal fully to start building again. My pain and weakness were so lasting and new injuries so frequent that they tought that it was multiple sclerosis so they did a lumbar puncture.

Due to my steroid usage my capilaries are all unpredictably large so the puncture made a intrathecal bleeding which gave me radiculitis chilld, myoclonus and other nice things. All tests came negative for neurologic disease.

But now I got a nice working diagnosis of arachnoiditis, doctor said it is unlikely to confirm it because only adhesive form can be confirmed radiologicaly and it will take time for this incurable and hard disease to get there. My symptoms were comfined to paraesthesia at distal limbs, burning pain and back sensitivity/stiffness. They got better because I learned how to not provoke them.

Things were relatively stable until a month ago. I noticed cramps in my feet, soon adding metallic taste in my mouth after bumping my head once (that taste went away soon, a month later again present), I also noticed losing my hand power and grip weakness because I would get cramps whild holding some not so heavy things. I also got fasculisations in random places on body: face, legs, arms. My leg reflexes are too strong, and my kinesiotherapist told me I have extensor digitorum atrophy in both forarms and some atrophy in small muscles above the achile´s tendon. My smyptoms are symetrical arms/legs wise and left/right wise.

I am 22 and frail as faaaack, is life really throwing another incurable progressive disease at me?

I am sorry for ranting, I suck.
 

kiara

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Finalmente un altro italiano in questo forum....scherzo nessuno dovrebbe mai approdare qui, soprattutto alla giovane età di 22 anni.
I suggest you to go to a neuro, it seems there's something wrong with you but it doesn't sound like als, als usually doesn't start symetrically in all four limbs.
 

olly

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Life can suck sometimes mulino and i felt so sorry for you reading your post.
I have had a hard life with some major traumas,its a wonder i'm still here and sane(well, that could be debated)
You have to look for the positives in life..........we are always so much better off then millions of others if we have food and a home.

Please go see your gp for a referal to a neurologist and try not to worry as the possibility it being als are very very very slim.
And mulino.........you dont suck sweetie.
 

Mulino Bianco

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I want to do EMG, IgM and minocyte cd14 blood tests which are linked to neurological inflammation and als.

The most annoying current symptom is the weird taste in my mouth and I know it is not just placebo. I will end this trash early if it is mnd no reason to live another 2 years with burning pain. Might as well go to real hell.
 
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Ciao Mulino. Mi dispiace tu hai troppi sintomi--anch'io. I'm not italian ma studio la lingua. Mi piace molto. :) I've had so many crazy things happen with my body too, and bad luck my whole life. I just wanted to lend my support and let you know you can contact me if you want.
 

vickim

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hmm
A metallic taste in the mouth can mean you have an infection in your gums or teeth.

And if you get a diagnosed of a neuro muscle or even als there is life after diagnosed. The people on this site are a testament to that! You could be bringing on some of your symp toms with the fear and anx iety you are experiencing.

I am 5 years into my illness and I do not regret a day of my life good or bad. It has made me the person I am.

It is all about how you look at life. Life is a gift and it is your choice in how you decide to live it. There is good and bad in everything and if all you choose to look at is the bad then thats all you will get.

There is always something to look forward to, personaly I am making camping reservations for this spring, yes I need help getting to the shore of the lake to fish but I find a way. I will scoot on my butt to the shore if I have to!

I wish you peace and the ability to start looking for the good instead of bad. Go to the happiness now part of this site and load up on some happy thoughts!
 

Luke

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Sounds like you're dealing with some serious psychic pain on top of the physical stuff. Have you considered talking with a counselor? There is a way to feel better, and I think it could help you cope. You're so young that your odds of having ALS are very low. With the history you described, steroid use and such, there could be any number of things contributing to how you're feeling. Vickie's post was right on the money, too.
 

Mulino Bianco

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I do not think it is infection because that taste came after a headbutt it went away in a hour but now is back and I can taste it for like half and hour that goes away for 2-3 hours than back etc

my blood results are all normal I have to wait for imunoglobulin m still

I do not have babinski sign but the most worrying thing is the atrophy and taste also my fingers hurt in bones during activity
 

vickim

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hmm
Well a head butt can loosen teeth so food can get trapped under the gums. I have been fighting gum dis ease for 2 years and Yes it tastes like metal or copper (which is blood or puss). It came and went also.

I agree with Luke, you could be suffering after effects of the steroid use. Have they looked into that?

I hope you find out, and I hope it all turns out okay. I wish you peace.
 

Mulino Bianco

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I have stopped using steroids more than 15 months ago, this is not related to steroids I am beyond sure and so is my kinesiotherapist.

I am no longer `shrinking` to my normal size, my weight is stable for almost a year.

I have some white stuff on my tounge but I do not know was that before or is it new
 

olly

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Mulino,we can not give you answers you need to sort it out with your gp and get a referal to a neurologist.
Steroids can cause enormous long term damage to the body.
For instance my son has had chronic ezema since a toddler,his doctor had put him on some steroid cream but wont prescribe it any longer as long term it can cause liver and kidney failure...........and thats a cream!

The white stuff on your tongue is normal and most people have a light amount........however if its a very thick coating it could be you have a yeast infection /oral thrush and should see your gp for treatment plus stay off dairy such as milk and cheese for a bit.

Please please see your gp and stop stressing about als........99.99%you dont have it.
 

olly

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B$$$S gone to moderation.
 

olly

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untill my post shows up....... the white stuff on your tongue is normal unless its very thick,then it could be a yeast infection/oral thrush.
My son was taken of steroid cream for his ezema as long term it can cause liver/kidney failure.........if a cream can do that then taking steroids orally or whatever can cause serious long term damage to your body.
Please see a doctor,we can not help.
 

Mulino Bianco

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I will obviously go to a neurologist since that takes time I am here to ask you people does this sound like ALS.
Since I took a lumbar puncture that obviously tells that I was in a hospital a year before and we discussed male sex hormones (steroids), not what your son took (hydrocortisone corticosteroid).

Liver damage and sex hormones have 0% to do with neurological symptomes such a huge time after, it is NOT ALL RANDOM AND CRAZY AND UNPREDICTABLE.

I do not expect a diagnosis from a forum I expect to talk to ppl who have experiance and can tell me how much do my symptoms resemble als or something similiar.
 
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