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Kapten_Ragnar

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Feb 19, 2015
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Learn about ALS
Country
SE
State
Sweden
City
Västra Götaland
Hello PALS, CALS and lurkers !

First i want to apologize for another thread, made one a month ago when i was worried and depressed becuase my condition worsened alot on short time but i feel much better metally due to some reflection over certain things.

I'm not here again to make you tell me i have ALS, just want to ask some questions about symptoms. I will reapet my history of symptoms quick for those who didn't read my previous thread and make a small update since then.

4 years ago = first neurological symptom - Sleep paralysis/ Numbness while waking up back of my head (slept on back often), Waking up by nonexistant sound like doorslams/dog barking/footsteps/bell ringing etc. Extreme sound sensitivity ( dissapeared after a week ), Tiredness.

2 years ago = Most old symptoms continued, numbness in muscles ( around the body) usual when lay down in bed. waking up during nights ( due to lack of breath), groggy mornings. Vibrating sensation entire body ( from within).

1,5 years ago = Thinning wrists,fingers and toes. joint pain in fingers/hand,sore muscles, muscle twitching, Jaw cracking (while eating )

1 year ago = muscle cramps/spasm, continued weakness. continued thinning feet, Burning sensations(skin,muscles)

1-2 months ago = Upper/middle backpain, cracking joints (due to muscle loss entire body), Muscle atrophy (entire body includes Throat/Chin/cheek/jaw/tongue), problem Swallowing water/saliva, cant barely open my mouth entirely due to jaw weakness.

Appointment update = Since last thread i have seen a general doctor who did another physical exam, He checked my reflexes Feet/legs/arms/hand, Nothing happen when he hammered hands/feet/arms, No sign of bibinski (or what it calls), my legs reacted a little bit but flying up ( they were more or less symmetrical ).

My Neurologist refferal got rejected becuase there is no super obvious wrong with me ( read notes from my General doctor).

Good thing i probably will get a MRI on brain soon, Waiting for my appointment time. I will also try sending self referal to Neuro musclar specialist in Gothenburg instead going going through general doctors.

Now to my questions i wanted to ask you....


Have you had this complicated set of symptoms years before diagnosis? Or was the first signs you reflected over the major symptoms like Weakness/atrophy etc...?

I get a strange teribble sensation back of my head sometimes (feels like mix of cramp/headache/very mild pain) usual when laying down or when my anxiesty/depression comes now and then. It also feels like it goes down the neck and upper back(where my pain is) It is really horrible, Have you experienced something similliar?

I apperciate the time you take to read and answer ( sorry for wall of text ).



Robin Ragnarsson.
 
No, and I doubt anyone else has.

I did not choose to go back over your earlier posts.
You should have previously been directed to read the sticky note at the top of this forum titled "New Members: PLEASE READ BEFORE POSTING!"
But as both your original and new symptoms center on 'feeling' it appears to have not happened.
Read it and look carefully for "failing, not feeling".
 
My Neurologist refferal got rejected becuase there is no super obvious wrong with me ( read notes from my General doctor).

This sums it up.

No, these things you keep feeling have nothing to do with ALS either early onset or later in the disease.

The sticky is our official stand on ALS onset and we won't debate otherwise, that's why we took the great time and effort to write the sticky.

I think we have done all we can to answer you previously, I wish you all the best.
 
Waking up due to non-existent noises is called Exploding Head Syndrome. It is just amusing unless it happens all the time.
Your symptoms have nothing to do with ALS.
I suggest you should look elsewhere for answers. The ALS Forums is not designed for you. Good luck.
 
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