CIDP

[thepregnantpause]

Hi, does anyone on here have CIDP (Chronic Inflammatory Deluminating Polyneuropathy)?

[misswoosie]

do you mean Demyelinating? I don't have CIDP, but a similar demyelinating neuropathy called Anti MAG neuropathy. It differs from CIDP because it doesn't involve inflammation.

[thepregnantpause in reply to misswoosie]

Sorry yes I can't spell!

[misswoosie in reply to thepregnantpause]

What sort of symptoms do you have?

I think CIDP affects the nerve roots near the spinal cord, whereas Anti MAG usually only affects the peripheral nerves in the feet and legs.

Do you have an auto immune problem?

[thepregnantpause in reply to misswoosie]

Yes that’s right it’s inflammation of the nerves near my neck, I have weakness, muscle loss and loss of sensation in my right arm and had similar in my left arm about 6 years ago. Recently I’ve had severe pain in my left shoulder. I have IVIG treatments every 6 weeks which are helping but are not a cure.

[misswoosie in reply to thepregnantpause]

Have you had your antibody levels checked and been checked for paraproteins?

[thepregnantpause in reply to misswoosie]

I have no idea, I've had every test under the sun so I would imagine so. Why do you ask?

[misswoosie in reply to thepregnantpause]

I asked because, CIDP, like the Anti MAG I have, can be associated with some autoimmune conditions. I have MGUS .

Very basically, the bone marrow produces abnormal monoclonal immunoglobulin proteins , also known as paraproteins.

When I was diagnosed( I was suffering from extreme tiredness, balance problems, joint pains,skin/gum infections about 4 years ago) they also checked antibodies for Lupus, RA, Sjogrens and other autoimmune conditions that may be present when someone has MGUS.

Because I mentioned I had funny sensations in just my right toes at that time, the haematologist checked for MAG antibodies and it came back positive. That

I have very dry eyes and mouth so I suspect that I would now be positive for Sjogrens, but my Haematologist isn't particularly on the ball with MGUS, so I only see him yearly now, although the guidelines for my MGUS say 6 monthly blood checks for the paraprotein level and to check for anaemia, kidney function and any new symptoms.