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

hi there

Sure, we all want to be cured, but even having a cast iron dx like I do (autoimmune neuropathy caused by my lupus) and state of the art treatment (rituxan, at $20,000.00 an infusion) my neuropathy is still progressing. Especially my motor symptoms.

So, even if you do find out what is causing the neuropathy and treat it, there is no guarentee it will help it let alone cure it. It hasn't with me.

Personally I wouldn't bankrupt myself hunting for a cause, but that is easy for me to say seeing I know what caused mine. But then again I don't know what caused my epilepsy, so perhaps I do know what it's like.

best of luck with it all

hth
raglet

I mean that 95% of the time,
the treatment is basically the same,
whether the cause is found- or not.

I see Dr. Ray at Marshfield Clinic EC center.
(its the only female neurologist there is, so if you wish to have a male this isn't your neurologist)

She has no problems bumping your appts. up.
And since I've figured out what I'm actually being tested for (I had minor confusion) she really does go by the book, and knows what she is doing.

Hi. I did not realize so close. I have traveled to many places and Cleveland was 3 plus hours from my house and some others out of state. I think for me what I waited too long for was to go to an anestesolgist. I had such extensive testing and multiple opinions from neuro's etc but needed someone to really work with me on meds and treatment. I understand some family. I try to focus on my mom who is my strength and hope. My gramps and a few others balme my past for why I am like this or feel I am not doing everything to get well. I have tried to educate them but at this point I just accept they will not change and find other supports. You can email me if you want too. Nothing like someone who is going through similar for support. Hang in there