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Diagnosing - CMT and reflexes
Q: Mark McCowan asks: Have you seen any statistics on how many or how few people with CMT have reflexes when tested by a doctor with the little rubber hammer? I have communicated with one other person with CMT who also has zero reflexive action.
Dr. Parry answers: "I don't have exact statistics but it varies with different types of CMT. With CMT 1, the most common type, reflexes are nearly always absent. I used to say that they were always absent but have seen a few patients (less than 10 out of the many hundreds of CMT patients I have seen) who do still retain the reflexes at least in the early stage of their disease. In other forms of CMT the ankle reflexes are almost always lost but those at the knees and in the arms are often present until the disease is very advanced."
Mark observes: From Dr. Parry's reply it would seem a logical step that anyone who knows they have no reflexes or limited reflexes be tested for CMT. As he says it is normal for Type I, which is also the most common, to have no reflexes.

Diagnosing - Is a high sediment level in blood an indicator of CMT?
Question off the Internet - no name.
I was injured in an auto accident in 1993 with herniated disks in neck and back and nerve damage in my arms. I have undergone numerous testing both here in New Bedford, MA. and at Lahey Clinic in Burlington, MA. Problems have continued to develop and in 1998 it was found that the sediment level in my blood was extremely high. I am told it should be between 0-20. Right now mine is 93 and was up to 120 in 1998. I have tried to get to the reason why it is so high, but have not received any real answer. I was told that sed levels are high in lupus and rheumatoid arthritis patients. So far, they have not diagnosed me with either (thank goodness). However, after seeing hematologists and neurologists at Lahey, I was told that whatever is happening is chronic, but that's all they really came up with. I wondered if a high sed level is an indicator of CMT? Any info would be appreciated.
Dr. Parry answers: The sed rate is very non-specific -- if it is chronically high then there is likely some source of inflammation. It is not up as a rule in CMT -- it can be up in a person with CMT, but not due to CMT per se. Elevations can be due to: polymyalgia rheumatica, temporal arteritis, lupus, rheumatoid arthritis, mixed connective tissue disease, chronic infection, inflammatory bowel disease, uremia, hypothyroid cancer (gastric and colon), asthma, multiple myeloma, to mention a few!