Saturday, 24 August 2013

Update 30 - Information on CIDP (Part 2)

Further information from the video on CIDP......

Nerve biopsies are not useful for detecting CIDP - a lot of places can't process them properly (in the US? - bar Huston and  a couple of others) and the information can be conflicting as there is no definite outcome. Also the I stands for inflammation and there is not always inflammation shown in the nerve biopsy (maybe the disease needs renaming?)

CSF  examinations (lumbar punctures) show high levels of proteins in 80-90% of cases, however if the other symptoms were there then even with levels at 40 - 50 this would still be CIDP.

Diabetics having CIDP appears more common and the reasons are that Diabetes is a Neuropathy (but without the weakness) and it is possible for the nerve conduction values to creep into the range for CIDP.

The doctor states that: "In his opinion a reasonable number of diabetics get incorrectly diagnosed with CIDP!" 

As the weakness can be there for any other reason and the first 2 or 3 seconds of the tests prove how much weakness they have, so after the first couple of seconds if it becomes easier to push against their movement this doesn't count.

Diabetic patients are the toughest cases to sort out - there must be definite symptoms in all other areas.  As they will usually have numbness in their feet.  The doctor said he would expect significant weakness in the arms as one of the key differentiators.

One of the doctors attending stated he uses 5 points and if the patient has 3 out of 5 then it is CIDP:

  1. Progressive course - it is getting worse slowly
  2. Symmetrical proximal weakness
  3. Loss of reflex - also EMG's
  4. High CSF Proteins
  5. Demylinating Features

With diabetics this must be much higher! As they can have a number of the above.

Below is the chart shown in diagnosing CIDP:

And this is my version:

The actual terminology used is terrible for the normal person, so I apologise for this.  However the doctor did state that getting hung up specifically on these criteria is not helpful to the potential patient.

I do have diabetes. So by this scale I don't have CIDP? As there was no issues with my arms ever - they were and are 100% OK!  However I did tick all the other boxes.  Unfortunately for me I did and do have CIDP, so the CSF, EMG and complete lack of reflexes in my legs proved this.

More later...