CIDP Versus CMT

[Sonyaklou]

I have progressive weakness in both ankles and have had several tests the last of which was a sural nerve biopsy which showed loss of large and small myelinated axons, degenerating axons, regeneration clusters, scattered atrophic axons, several thinly myelinated axons and rare poorly formed onion bulb.  A focus of sparse perivascular chronic inflammation is noted and the endomurial blood vessels have thickened walls which is consistent with axonal and demyelinating neuropathy.  Which is this CMT or CIDP????  I need help as to which direction to go to get a definitive diagnosis as my doctor is stumped.  I had this 8 years ago which my legs felt funny like stumps then spontaneously went away.  About three months ago started again but this time is progressive and is getting worse with no ankle reflexes, weakness and some sensory problems and also burning but all in feet just below knees.  Please help me with a direction of which way to go.

[Caliber2005]

Hi Sony,
To start with CIDP is Chronic inflammatory demyelinating polyneuropathy .It is an auto-immune disease (Our defence cells in body target our own cells).In this case thay are targetting your peripheral nerves.It is a chronic condition and can involve any nerve and any number of nerves at any time.What biopsy report you have mentioned,shows demyelination of large and small axons with perivascular chronic inflammation.The fact that you have lost ankle reflexes suggests that S1 nerve is involved. With L4,L5 AND S1 involvement apparent by burning and sensory problems below knees.All this suggests that you need evaluation by an neurologist,who inturn can start medicine to control this inflammation of nerves with some disease modifying drugs.
Anti-inflammatory drugs can be started including Steroid therapy.  

[staley]

What did your EMG/NCV studes show?

[Sonyaklou]

my EMG showed slowed conduction with prolonged F waves consistent with demyelination.  My NCV showed a problem in the L2-L5 area I believe with axonal component.  I had an MRI of the lower back and pelvis which showed no problem in my back which could result in my leg problems.  I also had an MRI of the brain which showed non specific chronic white matter with T2 signal changes in the left parietal regiion.  I have seen a neurologist which ordered the blood work and biopsy but he is stumped.  He stated he doesn't believe it's CIDP as I have axonal degeneration and still have knee reflexes but according to my research CIDP does have axon loss and you still can have some reflexes.  Any information on this subject would be greatly appreciated even a referral as to what kind of doctor to see that would understand more of what I am going through.  I would just like to be sure if this is either CMT or CIDP because if it is CIDP it is treatable and I am losing precious time not being treated.  I know if it is CMT there is no real treatment and am ready to accept that but do need someone that is proficient in this field to be able to evaluate and make a definitive diagnosis.  

[staley]

Sounds like you have checked the CIDPUSA website? At one time, and it still may be there, they had a list of CIDP knowlegeable doctors. There may be one in your area. If you can't locate that link, they do have a contact email, in which case they might know one where you live. You could also try the Cleveland Clinic Neurological Institute, which is very highly regarded.