Does anyone think its worth it to see a hematologist for their opinion? I feel like I am exhausting my options, but I'm still in the beginning of this journey. I haven't accepted idiopathic and progressive.

had reason to believe that your blood had a problem that would affect the transport and delivery of oxygen and nutrients? Any doubts about Hemoglobin,clotting,platelet count? Sorry for answering w/ a question. Good Luck, Ken in Texas. Perhaps others have trod that path and will weigh in.

I personally have low platelets and wbcs since this neuropathy started. I thought that I would not still be going but the hemotologist (one of the few decent and kind doctors I have seen since this rodeo) but he says that something might show up later. :-(
I got lucky with him, as he is highly regarded here (very scarce in my location). But the folks on the boards will be happy that I post something positive. Before all this happened, I was Ms. Sunshine and a big jokester.
Nontheless, I think a Hemotologist will have a unique perspective and might open up another doorway for you.
Good luck with deciding!

Doesn't sound particularly useful to me, but maybe some others can chime in. He is unlikely to know anything about PN. But if it is not a hardship on you then you may as well get some tests, although I think your time would be much better spent seeing a clinic that specializes in neuropathy.

Doesn't mean a great deal to you, but when I visited Mayo they discovered that I had iron deficiency anemia, which I would think would affect oxygen transport, but the neurologist said that he could not connect this with the PN. It has since corrected apparently. May have been due to giving blood regularly. Don't have any other explanation. Then a few years later I had a low white cell count. So it seems something weird has been going on with my blood, but no health problems other than the PN.
Ron

Other than what zkrp already asked, do you have any reason to believe you may or have MGUS proteins which can be associated with PN. If you've tested positive for them, then it good to keep an eye on it with a hematologist. But I don't think they will have any solutions for you. I say this because John has been under the care of a hematologist since 2002 for SAA and since his PN is treatment related, they really don't have any solutions and don't really go looking.

Vitamin D3, K2, B12, folate, B6, iron,zinc and copper are the key nutrients for blood production. I've seen WBC normalize with proper D3/K2 supplementation. Baba....it may be worth exploring now while things are stable. They don't act on low normal or even below normal CBCs until it can be classified as a disease.

Copper, ceruloplasm, and ferritin are all low. Everything else okay but high lymphocytes and monocytes in csf and mean cell volume a bit high.

You may want to explore the copper/FE/ceruloplasm and correct the imbalance to prevent further progression of CNS damage assuming this is a factor. Copper, zinc and iron all effect one another and are best when balanced. Low copper is not recognized by many doctors as a probable cause of CNS and blood disorders. If you cannot correct this with diet/supplementation, there may be metabolic issues that would need to be explored.


Also, I doubt your doctors checked for K2 unless you asked for it. It's not a common thing they would routinely check.

http://www.ncbi.nlm.nih.gov/pubmed/15249607

http://www.ncbi.nlm.nih.gov/pubmed/23034053