Diagnosis of CRPS & Autonomic Nerve Damage or is it MS?

[ke851]

Hi,
I just joined this group and I'm trying to find some answers.  I have had severe pain in my back and legs for years, would stumble now and then and had times of my legs hurting so bad that all I could do was try to sleep.  It was all intermittent.  It became worse in 01/08 and by 03/08 I could barely walk, the pain became constant, and a new thing hit, my lower half from the hips to the toes gets actually physically colder than it should.  By 4/08 I couldn't walk at all, I can't move my legs, I can't put any weight on them without falling.  I went to the ER since I am uninsured and from there was referred to a Neurologist.  I had multiple CT's with and without contrast, multiple MRI's with and without contrast, x-rays of my back and legs, blood work, and a nerve conduction test.  The lowest temperature in my lower half  has hit 36 degrees as confirmed during the nerve conduction test when they had to use a heat lamp and hot towels to get it to register.  My lower half gets too cold, after laying flat for several hours with a heating blanket then my temperature will increase to normal, my skin will feel clammy once it warms up.  I am always too tired, always in too much pain that goes from my neck to my toes, and I have lost all muscle strength in my legs and am losing strength in my hands and arms.  The Neurologist said I have Degenerative Spinal Bone Disease because the tests show bone spurs all over my spine, I have two discs in my neck that are bulging, one disc in my lower lumbar that is compressed but none of those are pinching the nerves, I have damaged the Autonomic Nerve in my leg because the test shows that the area where the nerve should be is black and doesn't receive or send signal, I have a tumor on my kidney, a tumor on my right ovary, and a lesion on my liver.  The official diagnosis was Degenerative Spinal Bone Disease and Degenerative Autonomic Nerve Damage causing Complex Regional Pain Syndrome.  I don't know what to think or what to do.  I am so tired of being in constant pain and not being able to walk or move my legs and now with my hands and arms being affected I am afraid of what may happen next.  The pain increases and my lower half starts decreasing in temperature the longer I sit up.  The Neurologist said that she ruled out MS because I don't meet all of the criteria and she didn't see any lesions on my spine, just bone spurs and discs out.  

Any ideas would be appreciated.  

[doni54]

Hi ke851, and welcome to the forum.

I don't know enough about these things to give you an answer, but I agree with Shelly that you need your neuro to explain things better and to refer you to a pain managment clinic.

I hope you can get some answers and relief soon.  Keep us up to date on what is happening with you.  We are all here to help and support you as much as we can.

Take care,
doni

[sllowe]

Hi Ke,

1st things 1st - Do you have a good pain Mgt. Dr? You mention you are uninsured, so I'm hoping that somehow you can get the relief you need. Though you have been given a name of what you are facing, at a bare minimum, you deserve an explanation on the why's and symptoms of this (the cold, pain, etc.)  What you can do for relief, etc.

Of course you don't know what to do, you are in pain, can't think, and are frustrated.  What I do know is that you will find support, friendship and knowledge here.

I hope those in our group who suffer structurally like this will chime in and provide their thoughts.

Stay with us if you can, and thanks for coming our way ke851.
ttys,
Shell