Treatment without diagnosis

Posted by nicosuave @nicosuave, Feb 12, 2022

Anyone know if you are able to receive treatment for an undiagnosed illness? Can you get any treatment you want as long as you pay out of pocket? For example: IVIG, plasmapheresis, or other treatments to experiment if they help your symptoms/condition?

Interested in more discussions like this? Go to the Neuropathy Support Group.

I don’t think that’s possible. You will need a referral. There has to be reason or condition to have a procedure done.

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I have been almost begging for an MRI to see if it can help diagnosis of anything for my idiopathic neuropathy, but current neurologist won’t order because he’s certain in advance it won’t reveal anything. I have offered to pay out of pocket but he won’t order. That perplexes me! He wants to just watch me and see how things progress. It has been a 5 yr observation so far.
Now for treatment, I have specifically asked for the infusion and for plasmapheresis so we could see if they might work since we don’t know my cause. Again a big NO in ordering for me. I can kind of understand the potential liability there by them ordering something they don’t know will work, though they can order prescription drugs for experimenting with our unknown conditions….
So I go back to “let’s do an MRI to confirm I don’t have whatever could be helped by IVIG or Plasmapheresis “…. Vicious cycle. Best wishes with trying to get help with this frustrating condition (or illness, whatever it may be we have). I share the pain of this journey and while on it have benefited so much from the experience and suggestions from this group!

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I have idiopathic small fiber peripheral neuropathy that my neurologist suspects could be genetic. I don't have the pain and only have numbness in the feet and a little in the legs. I did a lot of reading to learn as much as I am able to comprehend about neuropathy which I think is a good way to help yourself and advocate for your health. Neuropathy Commons has a lot of good information when you want to learn more, including additional references – https://neuropathycommons.org/neuropathy/causes-neuropathy.

If you are not getting help with a treatment for your neuropathic pain, I think I might seek a second opinion and if possible seek help at a major teaching hospital or health facility like Mayo Clinic. As far as paying out of pocket for help with neuropathy, it's buyer beware — there are so many schemes out there waiting to take your money. Make sure you do your research on any treatment before you decide. Here's a couple of starting points.

FDA's Health Fraud Page
https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions

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