Ideas for pain relief from Small Fiber Neuropathy (SFN)

A podiatrist in Scottsdale AZ did the biopsy. This was after he misdiagnosed me with athlete's foot then circulation problems. Sold me a bunch or foot soaking products and creams that only "he" makes. I spent about $200.00 on them to no avail. As soon as the biopsy came back (not knowing I had already researched the condition thoroughly), and I was nearly in tears, he said "no problem" we have a treatment for this. It's called Exosome injections and I can do your first one right away. He continues..."it's $2,500.00/treatment and insurance does not cover it". I already knew this and I knew that studies have only been done on mice, not humans...we I guess they have done some research and these Exosomes look promising,.. but not real double blind clinical trials. It will not be long and every pain management clinic (we have one on most EVERY corner in Phoenix) will be doing these treatments...big money in it. Chiropractors are also in on the game. Oh, and the previous podiatrist also misdiagnosed me twice. First was Morton's Neuroma and the second was Planter's Fasciitis. What is the treatment for B12 deficiency and how does get it? Pam

I agree. My Sister who is on Medicare called Mayo when she was diagnosed with breast cancer several months ago and got an appointment at Mayo Jacksonville the next week. I guess Breast Cancer is a rare and difficult to diagnose disease? Pam

I first went to Mayo Jax breast unit 3 years ago. I have seen a lot of dif. drs. In dif. Units and the breast unit is the best, hands down. If you call up there with a question, you WILL get a call back the same day and usually within an hr. I believe Mayo standard is 48 hrs. While I have never found a rude or seemingly uncaring employee of Mayo, the breast unit goes above and beyond the rest. When I first called up there, I also had an appt. within a week. How I wish all depts were so easy to get into and deal with.

Ahh...yes, money rules everything, unfortunately. That's why it's so important to do our own research and advocating. (I sound like a broken record!) 😊
I receive B12 injections every two weeks. It took 6 months to bring my methylmelonic level up to par. I'm currently waiting for my neurologist to advise whether or not I can switch to oral B12 supplements or do my own injections and reduce the frequency or not. I'm also having some tests done with a gastroenterologist to see if there is defining answer why I became deficient.
Rachel

Thanks! Maybe I need my B12 tested...I thought one got tired with this deficiency? I have too much energy...Pam

Hi Burning
I don't live in Arizona, but I am happy to go there if they had accepted me. Disappointing!

Yes, from the sounds of it you do! Haha! Rest assured you would know it. I never understood my lethargy. Could not make it up my stairs without stopping midway for a breather. Drained, exhausted and spent is the best way to describe it.

I have Medicare & a 2nd Insurance & the Scottsdale Mayo Clinic does not take Medicare consignment but I has surgery at the Phoenix Mayo in 2018 & what they do is , Medicare sends you the check & you pay the Mayo Clinic but Mayo Clinic can charge up to 15% more than what Medicare pays. I have had a lot done there & I had no problems but about $10.00 out of my pocket. People are getting it confused. It is not that they don't take it but you have to go through the red tape of getting the payment from Medicare but it worked out perfectly for me & they sent me the check quickly within 3 weeks so you should look into better.

Also, Pam, your neurologist will (should) do a very extensive workup on you to search for a cause. Mine took over 4 months to conclude.

I just researched the MediCare refusal issue. It appears doctors and hospitals can limit the number of MediCare pts. they accept.
Emotionally, I believe everyone should be eligible for health care without going into bankruptcy, but practically, I don't see how it could happen here any time soon. MediCare for all may just be a pipe dream, unless all the health care providers are forced to accept it, which would open another can of worms, since their reimbursements rates to providers are so low even now that many practices (like Mayo in Scottsdale) are not accepting it.