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roxaclou

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Apr 19, 2012
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Learn about ALS
Country
CA
State
Alberta
City
Valleyview
:roll: Well I am one of those the Doctor's don't know... Every blood test known to man was undertaken in the last three year. Been through so much:confused: loss of family not understanding I can't keep up anymore. :evil: Your just lazy or faking :confused: why would I I have always been a hard work working two or more just being there for my Sister. Always willing to help. Still want to but I am not able as my muscle just don't allow me to.. I've had the battle for a while so I am getting used to pacing myself.
Through all the test and examination we have come to the conclusion it is NOT ms:mrgreen: I have feeling through out my body hyporeflexive bilaterally in upper extremities, positive upper limb tension on left, and hyporeflexive on the left Achilles. We found a C6-7 disc osteophyte that was causing moderate mass effect on the spinal cord without signal loss. Finally consulted with a neurosurgeon hoping he would operate and I can gain my mobility and energy back. They were squashed when he said Due to other abnormal observation above the level of injury he could not recommend surgery until "it" was ruled out. I asked what "it" was he replied he wasn't a diagnostic Neurologist he was a surgeon. He was not confident that the surgery would help me or I would heal from it as it maybe neuro/muscular, but I DON'T fit into a medical diagnostic box:confused:
I am treated well by my family Doctor and she asks if the medication helps me. They have given me everything to help with the tightness and pain from the spasms. I need encouragement even though I don't have the a confirmed diagnoses. My pain and weakness is real and steady. It is like a beast in the night when I went off my baclofen for a couple of months I was waking up with hands curled in and toes pointed. Spasms suck... Went back on the baclofen and it been better. I now have had muscle fasciculations in my deltoid muscle, and rib cage it didn't hurt very much kind of cool to see. anyways any encouragement will be great. Note I am married and 35 years old.
 
So sorry about all your problems. Have you seen a neuro yet, You need to get an EMG done if you haven't yet. Docs will try and rule all else out before a diagnosis. Limboland is no fun but hang in there and hope all goes well for you. Keep us posted. {HUG}
 
Get your primary care physician to refer you to a "diagnostic" neurologist. Once the neurologist makes his diagnosis, you'll know what's wrong with you. Then you'll know for sure whether you need to be here or not. Until then, there isn't really much other advice to give you.

Good luck.
 
Take care there and make sure you get examined by a good neurologist. There is a big list of neuromusculair diseases that "fit your box"/symptoms so don't panic about ALS untill those have been excluded. There is a big chance it is something else! I understand you are afraid but stay positive okay! I hope & pray we both can throw aparty soon not having ALS!

Take care!

Anja
 
I'm on a similar diagnostic journey and the fear you express is all too real. Do you have any issues with breathing, speaking or swallowing? If not, I would think that's a promising sign after three years. Hoping that you find a treatable cause for your symptoms. Hang in there and know you're not alone in limbo land.
 
As Tr said, go back to GP and see a neurologist. Have a list of symptoms and questions. Good luck on your journey.
 
Since it sounds like something was seen on the MRI--it seems your doctor needs to figure out what that 'is'. I'm sure the neurosurgeon or the radiologist that read the report typed in the differentials.

It's their job.
 
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