I realize there are many many causes of neuropathy. I have been tested for MANY MANY MANY of them. I do not have diabetes. I have been tested for many autoimmune diseases. I have not had a sip of alcohol in my life. The only thing that was wrong in all the testing was that I was deficient in my vitamins--because of the GBS. My levels are now back to normal, but the damage has been done. Just because the levels are back to normal, doesn't mean the neuropathy magically goes away. My neurologist said that the neuropathy doesn't just go away when the levels are back up where they should be.
By all means, if you have other suggestions (or anyone out there) of what else could be checked, please do let me know.. but I've had every test that we know of... and nothing else has come up so far.
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Originally Posted by mrsD
I think, Sarah, you are misinterpreting the terms.
Certainly you have A neuropathy... but there are over 100 causes of neuropathies. Things that act globally in the body, like diabetes, or toxins, or autoimmune, GBS, or deficiencies attack many sites not just one.
Your EMG showed large fiber involvement. But the EMG cannot tell anyone WHAT is causing that.
You came here initially saying you had a neuropathy from your bariatric surgery. You said you were not absorbing your vitamins etc. Then you said they were tested as "normal". So I have lost track of your situation and am getting confused, including the later information about your back and arthritis at your young age.
Mayo is not perfect. Many have come here from Mayo, and found it less helpful than anticipated.
I certainly do hope your issues clear up, and your pain starts to recede. Sometimes people do get better.
At your age doctors are hesitant to offer opiates. There are other pain management techniques, including SCS devices and pain pumps.
Here is our forum on that subject:
http://neurotalk.psychcentral.com/forum118.html
Asking doctors, as Joan has pointed out, about "stronger" drugs, is sometimes met with them closing down, and making assumptions about your motives. This happens with many many patients. Many neurologists have the personality of a "rock", and are not very compassionate about how you feel and suffer. We've had many discussions about that subject here! |
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♥ "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth ♥
My name is Sarah and I am 25 years old. I have a lot of chronic health problems. Peripheral neuropathy and POTS (postural orthostatic tachycardia syndrome) keep me bedridden the majority of the time. I also struggle with degenerative disc disease, disc desiccation, spondylolisthesis, arthritis, polycystic ovarian syndrome (PCOS) with insulin resistance, allergies, sound sensitivities, and other health problems.