Mayo, a long shot or worth a shot?
 

I have idiopathic peripheral neuropathy (pn) along with depression and insomnia. Family and friends are urging me to go the Mayo clinic in Minnesota. I suspect medication may have caused the neuropathy but can't say for sure. I fear medical bankruptcy, but also understand that without identifying an underlying cause you can only treat the symptoms and the symptoms can be hard to treat. I have not made much progress against the three conditions in two years of trying. I'm looking for advice from forum members that have gone to the Mayo for their pn problems. Would you recommend going/not going?

I went to Mayo in Rochester.

They did a full body CT scan, another EMG (even though I'd had one in my home city), and A LOT of blood testing.

*if you go I suggest staying in a hotel*
I live 3 hours away so I drove.

But, after all that they didn't figure out what was wrong, and I was told if my neuropathy progressed to go back and they would proceed with the spinal tap, and nerve biopsy as I would need treatment.

The only positive is that they are good with their EMG's not hurting.

I did the lumbar puncture in my home city.. and any future testing will be done here as well.

I don't like waiting an hour.

I think if you have something rare and need a specialist.. sure.
*Esp. if you can afford it*

Can you get on medicaid for medical back up?
How about getting on medicare?

I don't qualify for SSDI cause of work credits.. but I do get SSI.
Its a godsend.

I'd suggest it if you are paying a lot for medical expenses.

Thank you for the reply, diagnonsense.
 

I don't have very good health insurance and I suspect that Mayo would want to look at all three conditions(depression/insomnia/neuropathy). Cost definitely is a concern. I don't have mental health coverage and hardly any prescription coverage. So many of us are one illness away from bankruptcy. Thank you for the straightforward response.
Herco

Identification of the cause of PN can be a long & costly testing process.
It is done by a process of elimination-no one test will dx PN.
The odds of finding your cause is very small. You must be persistent and
be willing to undergo many tests over a long period of time.
That said, treatment is basically the same for 95% of all the different PN causes.......unless you have CMT or Autoimmune, or inherited (gene testing) PN.
If I were you, I'd be sure my glucose GTT testing for pre-diabetes is done, & have Gluten intolerance testing done.
(www.lizajane.org ...has all the tests for PN, and a downloadable
chart to track the test results.)

Hi. I know a couple years ago my mom called Mayo and they had her fax all my medical records/test results for the group of docs to look at. This was to see if they felt they could help me before I flew out. You may want to call and see if you can do this. Where do you live now and who has been caring for you? Do you have a university hospital or teaching hospital near you? Right now my best pain doc out of the many I have seen is from a teaching hospital though he is the head I think. Anyhow I had been to more prestigious places like Cleveland Clinic and UCLA and my care was not nearly as good as what I get with him. He takes time and looks outside the box. I am not against going to major places but what I am saying is that sometimes you can find good care close to home. Take care

Mayo yes or no.
 

Thanks for the reply, daniella.
I live in a mid-sized central Wisconsin city about 3 hours from Mayo and 3 hours from Milwaukee. I guess I'm not real confident with the local medical care. With neuropathy where do you draw the line? The term idiopathic is hard to accept. We all want answers and cures. Anyone with pn just wants it to go away. Family and friends keep urging me to find the doctor with the answer. Sometimes it seems as if they blame me for not trying hard enough to get better. I'm tired and confused. Hard decicions have to be made. Input from fellow forum members that have grappled with the same issues is much appreciated.
Thanks again,
Herco

Thanks nide44
 

Do you mean that 95% of the time a cause is not found and you're left with treating the symptoms? I fear that is the reality with neuropathy. Thanks for your input.
Keep picking and grinning,
Herco

Do you live in Eau Claire?

I can recommend a neurologist in that city.

I live outside of Stevens Point--about 90 miles from E.C. Please, send me the info on the neurologist. I have a niece going to UWEC. I'm trying to convince her to become a neurologist.
Thanks,
Herco