Difficulty getting diagnosis let alone cause
 

My symptoms have been going on for about 5 years. I first noticed pins and needle in my arms when trying to go to sleep. It felt like I had impinged my blood supply so I would roll to other side and the same would happen to that arm. At the same time I started having irritable bowel syndrome and for the next 18 months I was constantly going to the toilet. I did have a colonoscopy and all was good. That also stopped on it;s own and I am not sure it is related but weird it started at the same time.I then started feeling more detached from my arms and getting pins and needles all the time, or a buzzing kind of feeling. I feel that in my legs too but my legs don't bother me as much. Then my hands started feeling cold and in winter for some reason my left side is colder that the other and goes red. My left leg feel different from my right I can't explain how but does. I then started getting shooting pains in my arms and muscle twitches on occassion. My left leg cramps in the morning as well. Last summer light breezes and airconditioning would hurt my arms. This winter my arms feel cold and painful. I have had nerve conduction studies which were normal. I have had an MRI of my brain and spine all normal. Blood tests normal except I always have mild neutropenia. All anitbody tests negative. I have seen a couple of neurologist that do same same neurological exams all normal. One neurologist did skin prick test with eyes closed using dull and sharp. Apparently that was abnormal.
I just saw a diagnostitian that basically said it was all in my head and it was not nervous system. I do have auto immune Hashimotos disease which involves antibodies destroying the thyroid. I am taking thyroxine so my thyroid function is usually normal. Until now I have always thought of it as peripheral neuropathy involving small fibres unknown cause. After seeing that horrible doctor not sure what to think. Small fibre neuropathy is also suppose to start at the feet which mine didn't. Anyone have any suggestions.

Have you read anything about RSD/CRPS?
Some of your symptoms fit with that also.
Here's a link to our RSD/CRPS forum with more info -
http://neurotalk.psychcentral.com/forum21.html

Thanks for links
 

Thanks for the link :). My son has had RSDS twice so I am familiar with it. He has aspergers and his nervous system operates differently. He had it the first time after he was immobilised because of hip problem at 13 and second time sponataneously due to leaning on his arm for too long at
16. The first time I had to take him back into hospital to manage his pain but leant that was a waste of time. I then had to be tough and keep him moving through it. Magnesium and heat packs helped. I used lots of distraction whilst movie i.e the shops, reduced his stress by dropping a subject at school and I bought totum tennis. I don't think it is that. I don't have the level of pain he had nor have I had any injury or immobility.

I found your post extremely interesting. I have hereditary sensory-motor neuropathy, also called CMT. My symptoms started in earnest, beyond my life-long clumsiness and lack of coordination, about 12 years ago, almost exactly the way you describe yours, with the addition of numbness in the toes of both feet. I also had disabling sciatica which required a laminectomy, (removal of material from a ruptured disc pressing on the nerve) at the time.
My hands and arms were so much the problem that I was sent for an EMG on my hands. Diagnosis was bilateral carpal tunnel, which should have been a red flag, but I was afraid to mention the numbness in feet because I was scared it meant I was diabetic. Dumb.

All those words to lead up to this: you mention that your son has Asperger's, and that his nerves are wired differently. Is this your idea or has a doctor told you this? I ask because both myself and my eldest son have Asperger's and he is the one showing the most symptoms of CMT at 27. I have ways believed that this (Aspergers) affected his nervous system, he developed shingles as a child and was the youngest patient then seen by his doctors with it. It affected a nerve fom his eye to his ear, and he is in danger of having it affect his vision or hearing. He suffers terribly from post-herpetic neuralgia.
Aspergers does tend to be hereditary, like my neuropathy, and I was wondering
if you thought there was any possibility that you had it? I m very interested in exploring the link between it and nerve disorders. My second son, who only has a few autism spectrum traits, has had several doctors mention Marfan's syndrome to him, as he fits the profile for it. We are all unusually tall with extremely long arms, fingers, and legs, and he has a severely compromised rib cage, caved in, which inhibits heart and lung potential.

I was never certain how many autism spectrum traits displayed by the other two bios were hereditary and how many were the result of being raised by an Aspie mom. My daughter's husband, a special ed teacher, swears she has Apergers, but she is much more functional than my eldest son or me.

After three children we were unable to have any more, and adopted the two youngest. Probably best to stop swimming in this gene pool!

I would be very interested to hear about the connection between Aspergers and nerve wiring, as well as whether you think it is a factor in your issues. As for the numbness and pain in your arms, even after being diagnosed with positive EMG/NCS and skin biopsy for large and small fiber neuropathy, and being on 1800 mg neurontin plus oxycodone as needed, my arms wake me up several times per night, and there is no position in which that will not happen.

If the skin prick test result was abnormal that should be enough to go on. It is unconscionable that they would say it was all in your head. Your symptoms are exactly what many of us here with DXs experience. It is possible your EMG/NCS was done incorrectly.

Aspergers
 

People with Aspergers have high functioning autism. People with Autism are wired differently. We only really experience our world through our nervous system and people with autism have problems with a whole lot of sensory pathways. They get overloaded very easy and have problems with sensory integration. For instance my son has tactile diffensiveness. He confuses light touch with deep touch hair cuts were horrendous. As an adult it manifests in wanting to wear the same clothes all the time because he can't deal with different sensations. He was extremely anxious all the time at school and I think that had allot to do with it. I am not sure if there is a link with RSDS or not. I have ADHD but I am deffinitely not Aspergers.

Have you tried going gluten free; it may help both you and your son.