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New member
Nov 4, 2013
Learn about ALS
Hi there,
I have read the stickies and I hope you don't mind me asking a few questions now that I have.
My symptoms have been the same from day one, I have felt as tho I can't hold myself up usually once a day.
This feeling just comes on, usually with a burning fatigue style pain in my back rib cage area.
If I am doing tasks whilst standing up it starts, or if I have just eaten a meal and stand up to do some tasks the pain starts and I feel I need to lie flat.
In 2008 I saw a rheumatologist who within five minutes said I had Costochondritis.
I guess as the years have gone on my symptoms have gotten more intense I guess I've doubted that diagnosis.

I usually go to the gym and do weight training, I can go five times a week, box or cross train and the symptoms don't start- yet if I do certain exercises they do.
also if I lie on a bed a certain way it feels like it irritates my rib cage and the feeling begins.
I'm always hungry, and to look at me you would think I was a healthy 6ft man.
A member of this forum very kindly replied to my initial posting and said that the symptoms of ASL don't come and go-
I have no weakness in my arms or legs.
I was originally referred to a gastrologist,reason being if I ate food or a large meal it would hurt my back ribs and of course these symptoms could be a few digestive issues but every test came back clear.
I saw him on Wed and asked if he thought my symptoms could be neurological and he lay me flat on the bed and did a hammer test on my limbs- my arms barely moved (again can't be sure if he hit the spots right) then tested my legs and they both shot up- he said this is normal to have a difference in upper and lower.
He referred me to have lung function tests on a account of the shortness of breath and also to speak to someone as he feels allot of my symptoms are anxiety related.
I know in myself that I am anxious- but I also know that I have suffered these symptoms from day one so to me I have reason to worry.
my question is do symptoms of Respiratory Onset Disease start with symptoms that come and go, or are they there 24/7, same question for the shortness of breath is that there 24/7 or do they come and go to begin with.
only on occasion do I get short of breath- usually daily but for most of the day and night I feel I can breathe normal- again my symptoms come and go.
My rhuemo also measured my rib cage whilst breathing and said it was normal.
I think I am feeling a weakness in my upper back, around the ribcage area and worrying that this is R.O.D
I understand I need to see a Nurologost to be looked at properly to rule out my worries but any words or advice would be greatly appreciated.
best regards,
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