SarahNina
09-07-2006, 07:16 AM
Well, my neuropathy is still idiopathic. Yesterday I had a HORRIBLE day with symptoms in my lower inner calves which hasn't happened since I started neurontin a few months ago. For several hours I just did deep breathing and on and off mediation exercies in attempt to control the pain. I wasn't too successful...
I'm starting to wonder if any allergies can cause PN. I know about celiac and related things, but my neurologist seems content that since my bloodwork came back normal I'm in the clear for that. I am a vegetarian and eat more soy than most people. Does anybody know if soy can cause PN? What about any other food allergies?
Has anybody seen an allergist to try to get to the bottom of their PN when the neurologists couldn't find anything?
I'm feeling really scared these days because I am unsatisfied with how little the Drs know about what is or isn't causing my PN. I am only 25 and the thought of this progressing for the next 50-60 years is really upsetting.
Thank you
I'm starting to wonder if any allergies can cause PN. I know about celiac and related things, but my neurologist seems content that since my bloodwork came back normal I'm in the clear for that. I am a vegetarian and eat more soy than most people. Does anybody know if soy can cause PN? What about any other food allergies?
Has anybody seen an allergist to try to get to the bottom of their PN when the neurologists couldn't find anything?
I'm feeling really scared these days because I am unsatisfied with how little the Drs know about what is or isn't causing my PN. I am only 25 and the thought of this progressing for the next 50-60 years is really upsetting.
Thank you
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dahlek
09-07-2006, 02:43 PM
Allergies and the symptoms, from what all I've read can aggravate symptoms, but, in and of themselves don't cause them -they just make you feel worse [?].
Believe me, I went the whole/home mold etc assessment...It said yes 'stuff'was present, but not at toxic levels...Waste of dollars.
Ideopathic means that after all the tests, no one thing jumps out and Screams AH-HAH! Most neuropathies, I believe about 90-95% are the 'ideopathic' type. Some non-'i' types, well, believe me, you really don't want to know about?
I'm surprised you've not found any good neuros where you live, Do web searches of the region's hospital neuro depts & docs+their resumes... From Papers I've read on research and all, there seem to be lots of docs that are on top of Neuropathy issues in your area. Look! I bet you find them...And, don't forget, second opinions are cheap compared to non-treatment and additional problems. Put your mind to ease and find out what's going on and be sure it's all well-explained by folks who KNOW. If you have to have the pain, better to be treated by docs who deal with folks like you all the time! I am surely hoping you find that good doc! Keep us up do date, OK?
Believe me, I went the whole/home mold etc assessment...It said yes 'stuff'was present, but not at toxic levels...Waste of dollars.
Ideopathic means that after all the tests, no one thing jumps out and Screams AH-HAH! Most neuropathies, I believe about 90-95% are the 'ideopathic' type. Some non-'i' types, well, believe me, you really don't want to know about?
I'm surprised you've not found any good neuros where you live, Do web searches of the region's hospital neuro depts & docs+their resumes... From Papers I've read on research and all, there seem to be lots of docs that are on top of Neuropathy issues in your area. Look! I bet you find them...And, don't forget, second opinions are cheap compared to non-treatment and additional problems. Put your mind to ease and find out what's going on and be sure it's all well-explained by folks who KNOW. If you have to have the pain, better to be treated by docs who deal with folks like you all the time! I am surely hoping you find that good doc! Keep us up do date, OK?
SarahNina
09-07-2006, 06:32 PM
Thanks for your reply.
I do have a good neurologist at the Univ. of Penn hospital. I just can't help hoping that there will be a 'simple' answer. As I said in my last post I'm scared that if the cause isn't found my neuropathy will just proceed to take over my whole body. My neurologist, for obvious reasons, can't predict what will happen to me and what level of pain or comfort I can expect. During my last visit I went through a series of tests to rule out different blood cancers and diabetes and I think we all knew my chances of having either were about 0%. That leads me to believe that she's running out of things to check.
One day at a time... yesterday was a nightmare and today was significantly better.
I hope you're feeling well....all of you
I do have a good neurologist at the Univ. of Penn hospital. I just can't help hoping that there will be a 'simple' answer. As I said in my last post I'm scared that if the cause isn't found my neuropathy will just proceed to take over my whole body. My neurologist, for obvious reasons, can't predict what will happen to me and what level of pain or comfort I can expect. During my last visit I went through a series of tests to rule out different blood cancers and diabetes and I think we all knew my chances of having either were about 0%. That leads me to believe that she's running out of things to check.
One day at a time... yesterday was a nightmare and today was significantly better.
I hope you're feeling well....all of you
6foot3
09-09-2006, 12:33 PM
I am a vegetarian and eat more soy than most people. Does anybody know if soy can cause PN?
Well i've never read anything about soy causing neuropathy but i have some thoughts here.You stated your a vegetarian so they are usually low in B-12 which can cause neuropathy and although soy is high in B-12 it also has Phytic Acid which is a mineral chelator so whats this have to do with B-12...Well B-12 is the only vitamin attached to a mineral (cobalamin/cobalt) so the Phytic Acid could be chelating this out of the gut. Best to try sublingual B-12 (under tongue) to be absorbed directly into the carotid artery and see if that helps.....
Well i've never read anything about soy causing neuropathy but i have some thoughts here.You stated your a vegetarian so they are usually low in B-12 which can cause neuropathy and although soy is high in B-12 it also has Phytic Acid which is a mineral chelator so whats this have to do with B-12...Well B-12 is the only vitamin attached to a mineral (cobalamin/cobalt) so the Phytic Acid could be chelating this out of the gut. Best to try sublingual B-12 (under tongue) to be absorbed directly into the carotid artery and see if that helps.....