Is the Adrenoleukodystophy for you? That is more common in young boys, has it run in the family before?
What do you mean by sick cns?
when i first went to neuro and he said there was demylenating disorder..then mentioned i should watch lorenzo's oil i have heard that it commonly carried by the mother onto her son. but on rare occasions the mom has exacerbated symptoms as well. resently battling infection i began sweating a thick oily type sweat and had some foul smelling fluid from my ears. someone replied that that could be from a very sick central nervous system
i have never had either of these sympoms before. profuse sweating no matter the temperature is common but not this thick oil sweat.
It is genetic - are they running tests? What tests are they running?
thank you so much for replying....i have thought all along what is happening to my brother, myself and my son is somehow connected. dr's seem to think i am reaching. the only tests that they have planned are another brain and this time with spinal mri scan(no contrast die) evp and emg. they are also going to have a urologist involved because of the number of utis, bladder and kidney infections i get and how hard they are for my body to fight them. but back to the oily sweat and leaking ears PLEASE if you have ANY test suggestions or genetic tests you think may link us all i would be so thankful! I have watched my brother go through 5 yrs fighting infections and now he too is having CNS / Neuro complications. My son at a very early age started this to. I will be waiting anxiously for any suggestions you have.
thank you again!
I sent you a link where you can order the genetic testing yourself.
thank you very much for the links you gave to me. If you know about Asperger's Syndrome it is amazing how much they have in common. you would think they would have tested me for this as he tallked about it when we first met. however it seems the mom wouldn;t have so many issues. and they don't discuss the thickk oily sweat and leaking ears. but i definitely will try to get the genetic tests you sent.
thank you again for all of your help. i do feel alone so much of the time.
I have the same symptoms. Thicky, oil sweat on skin, Raynaud sign, some neurological problems and weight loss. Much doctors has been visited and I'm still not diagnosed. Can it be adrenomyeloneuropathy or something other? I'm 20 yo.
Certain chemicals that are harmful or produced illegally - such as illicit drugs, particularly non-pharmaceutical methamphetamine cannot be processed by the kidneys or cause blockages due to their specific reactivity with water (aquaphillic). So the body will push it out through the sweat glands. Because they tend to dehydrate the person as they absorb or bond with water at a higher ratio per ml than water soluble chemicals would, they tend to be pushed out of the body in a thick concentrated greasy or oily sweat. See if you can do an experiment. Take some toilet paper and bunch it up and then wipe skin in different parts of your body, eg cheeks, forehead, arms, legs etc. If the toilet paper is really chunking and flaking as if there are a bunch of little knives catching it rather than wiping your skin as if the water was only on the surface, then you're dealing with a toxic chemicals that you are somehow being exposed to either through use of illegal drugs or unknowingly at work or perhaps apartment next door etc? Especially if you live in very humid climate, this stuff will bond with moisture in the air and circulate around the whole neighbourhood depending on how stable or unstable it is. This is why meth labs explode. Essentially under your skin (between epidermis and the muscle) these chemicals will dehydrate cells making it a horrible mush and as they thin the skin and are pushed out, the contact with air moves the substance from a liquidy to a solid state and therefore they thicken and "stick" to you. The result is more sweating and usually some form of blistering on the skin. Do you have sores?