Thanks for the reply Jennifer,
My neuropathy is causing weakness in my feet and lower legs and now muscle atrophy in my calf muscles.
I have foot drop & weak ankles from it. I feel I have had some symptoms for a number of years, but it has gotten worse in the last 2 years and significantly worse in the last few months. I also have numbness, cramps & pins & needles in my hands. My blood tests are all normal but my CSF protein was slightly elevated.
I'm sorry to hear of your problems. I haven't been on any medications that may have caused it. Apparently there are 100's of possible causes, but I'm intrigued that you have it as part of your Nomid.
Do you mind if I pass on some general info about what you've told me to Tom's neurologist?
I'm actually not that unwell overall. It's more my mobility is restricted and I'm very tired all the time. Nothing like you have to deal with though!
Thanks again for the thoughtful reply and I keep you and Hallie and all the families constantly in my thoughts.
Regards
Louise
Tom in Australia's mum
----- Original Message -----
Sent: Tuesday, May 08, 2007 10:58 AM
Subject: [nomidsyndrome] Re:Tom in Australia
Hi Louise,
I saw your past on the yahoo group and saw your question about the
neuropathy problems. I first would say that I would never begin to diagnose
or compare situations, but your situation did spark in interest. My nine
year old daughter Hallie and myself both have the CIAS1 gene mutation
related to NOMID. We have been under the protocol at the NIH since April
2004. We are somewhat of a mystery because we do not present exactly the
same as the typical NOMID patient. They tell us we are on our own end of the
spectrum. As we all know NOMID and the disease associated with this mutation
can vary greatly. All that to say, that I have been diagnosed with
peripheral neuropathy in my feet. It started after a very severe
complication with a spinal tap my first visit to the NIH. I went through a
period of months that the tingling sharp pain was almost unbearable. Then it
all started to subside as mysteriously as it came on. It is definitely flare
like. I also have had some of the same sensations in my face. Primarily the
right side. Recently I have started with the same sensations across the top
of my back. My last 2 visits to the NIH have shown some loss of sensation in
my right foot so Dr. Karp is planning on doing the nerve conduction study on
my next visit in October to see if something is progressing. I have been on
several different drugs that are supposed to help control this somewhat. I
am currently on Neuronitn for chronic headaches, but it should be helping
the neuropathy also. I have no idea if this is the same type of thing you
are dealing with. I am not even sure if they know exactly what I am dealing
with and to what extent. I know there are so many different types of
neuropathy so I may be completely off base here. I just thought I would at
least respond since you ask the question. I feel that the neuropathy is
starting to flare up. I am currently non weight bearing on both feet because
I have a stress fracture in my left foot and 2 stress fractures in my right
foot. These occurred because of my osteoporosis. Yes... I am 36 with
osteoporosis. The lovely side effect of prednisone.
Anyway, I am sorry to hear that you and your family are dealing with so
much. It is hard when the Mom is sick too. I know that first hand. Stay
strong and take care of yourself. I wish you the best as you search for your
answers.
Jennifer Earnhart
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