Actually my ferritin is low normal and I am on iron supplements. Low ferritin doesn't give you any symptoms not untill you're anemic. I'm not anemic. But you are right, many of the symptoms I have fit anemia and its been tested many times so that's not it. Thanks

Is your mouth sorta dry. Are your eyes bothering you with dryness symptoms? Are you having to change the prescription in your glasses often? Fatigue is a classic marker for Sjogren's Syndrome. And has he done the specific tests for sjogrens? (SSA & SSB)

Billye

Hey Savannah,

I only mention it because my ferritin was low normal and I was not anemic, not even close to anemic. They put me on iron supplements and it barely improved, partially I think to absorption issues that I have and the insulin resistance.

I now take precription iron supplements once a day (its called repliva) because the over the counter did nothing to improve it. And within three months my symptoms have improved greatly both the fatigue, the neuropathy symptoms and the shortness of breath, rapid heartbeat etc.

Then I tried for two months without cuz I thought that I had enough iron stores and within two months I was back to where I was.

Maybe its worth asking the doc for the prescription iron.

I hope you get some answers soon.

Yes I've had the test for sjogren and I don't have eye problems . Its a real mystery and thats why I'm left on my own. I can't find a physician interested enough to look beyond lab work. All labs and my extensive workup was normal except skin biospy. Strangely the more severe my fatigue and exhaustion the less trouble I have with pain or any PN symptoms. Maybe its because when I feel this bad I can't do anything. It does seem that the more active I am the worse my PN hurts.
The only other thing is my skin looks 20 years older than I am. Its dry, wrinkled (arms and legs) and that actually was my first PN symptom, very dry skin an my legs.

I can relate I was on the hunt for a good internist and saw 4 this year in hopes. What other specialties have you seen? I am assuming a neuro but others? Since my internist hunt was bad I went to many specialties with not a lot of answers still but extra tests and ruling out. Have you been to an endocronolgist or a reumo? Please hang in there and just because one doc gives up you can't. I have been brushed off by so many docs and have been told they don't know what to do but after I take a little break. Usually this is after I go on my rant I calm down and move onto the next.Right now I am trying to be on a doc break but I try to remind myself it just takes 1 good doc to help.

Savannah -

Daniella is correct, it takes just one good doc. Please hang in there and keep hunting. Is there a family member or friend would could take up your "fight" and help?

I think I may have finally found an good endo doc. He said that finding the cause for enuropathy was like tire tracks on the beach. When I asked what he meant by that, he said "finding the truck that made them." He said we'd start with the normal tests and go from there. So, maybe this doc is different from the rest.

Will wear you out,PN pain can wipe you out,please be careful driving.Can
you feel the pedels,have you had a bad spamsa in you foot driving. Just
wondering,I know you must make a living.I had to stop driving many years
ago,did I hate it yesbut I worried about others..This must and will be your
decision. Could I ask when was the last time you had a NCS? Am very glad your not stuck with Sj. like Billye and I. But there so many types of PN and
and so many other things that may screw you up ,such as a adrilian gland
Well now that I messed up your day i'll quit..You got some good advice just
make sure you try to find a Dr. Neuro who knows what PN is not just a headacke..Sue

Savannah---I have celiac disease, you have symptoms of this disease too, be it celiac disease or gluten intolerance. Fatique can be the #1 symptom for some of us, as is low iron. My sister's iron level was so low, she had to have iron transfusions every Wednesday for a time. Once they diagnosed celiac disease and she went gluten free, she has not had to have the transfusions. Celiac is the #1 autoimmune disease in the world, and the most undiagnosed. Neuropathy is another symptom.

They can do a blood work up for this disease now, as a starter. There are others here who have found going gluten free really helps them.