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Sensory CIDP - can anybody suggest a US/CANADA specialist
I am looking for answers - can anybody suggest a specialist?
About 4 years ago I started suffering from burning/tingling/muscle aches in my arms and then my legs.
Tests have shown that I constantly have an elevated IgM (6.66 g/L), a mildly low IgA (0.90 g/L), a four times normal GM-1 IgM Antibodies(4297 BTU). I also have a mildly raised ESR & CRP.
Bone Marrow Aspiration shows that I have Lymphocyte clusters but no other evidence of Lymphoma, TB, etc.
On examination I have normal strength, normal nerve conduction studies and normal reflexes. I DO NOT have a benz jones protein or abnormal monoclonal bands.
My Brain and Spine MRI is normal with no evidence of demyelination I live in Manitoba, CANADA and my neurologist and hematologist are completely confused by my symptoms. My neuropathy is controlled by 150mg amitryptyline and 450mg Lyrica.
I suppose that my closest diagnosis is a Chronic immune sensory polyradiculopathy but that apparently doesn't explain my blood results and my bone marrow biopsy.
Has anybody got any suggestions or know any good specialists anywhere that may be able to shed some light on my condition?
About 4 years ago I started suffering from burning/tingling/muscle aches in my arms and then my legs.
Tests have shown that I constantly have an elevated IgM (6.66 g/L), a mildly low IgA (0.90 g/L), a four times normal GM-1 IgM Antibodies(4297 BTU). I also have a mildly raised ESR & CRP.
Bone Marrow Aspiration shows that I have Lymphocyte clusters but no other evidence of Lymphoma, TB, etc.
On examination I have normal strength, normal nerve conduction studies and normal reflexes. I DO NOT have a benz jones protein or abnormal monoclonal bands.
My Brain and Spine MRI is normal with no evidence of demyelination I live in Manitoba, CANADA and my neurologist and hematologist are completely confused by my symptoms. My neuropathy is controlled by 150mg amitryptyline and 450mg Lyrica.
I suppose that my closest diagnosis is a Chronic immune sensory polyradiculopathy but that apparently doesn't explain my blood results and my bone marrow biopsy.
Has anybody got any suggestions or know any good specialists anywhere that may be able to shed some light on my condition?
Yeah that it what is different about me - the peripheral neuropathy started in my arms about 4 years ago followed by burning on the soles of my feet six months later. I however do not have any evidence of demyelination on my MRI's.
The pain in my arms and legs is now getting to the point that it can't be controlled by medication anymore.
That is why I was hoping there was a good specialist that somebody can recommend.
The pain in my arms and legs is now getting to the point that it can't be controlled by medication anymore.
That is why I was hoping there was a good specialist that somebody can recommend.
I have CIDP. The diagnosis wasn't 'final' until I had a nerve biopsy. I belief that demyelination
would be detected via EMG and Nerve conduction studies before a biopsy us usually done.
The typical treatment in the US is Intravenous immunoglobulin (IVIG).
http://en.wikipedia.org/wiki/IVIG
would be detected via EMG and Nerve conduction studies before a biopsy us usually done.
The typical treatment in the US is Intravenous immunoglobulin (IVIG).
http://en.wikipedia.org/wiki/IVIG
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