If money was no issue

[Shezian]

what would be the best treatment or diagnostic tool to treat PN?

Are there any kind of clinics in the world who specialise in PN? If so, has anyone experienced or heard of there service?

Sue

[glenntaj]

--probably the best specialty centers for neuropathy--many of these have done extensive research into diagnostics/causes/treatments--are Johns Hopkins in Baltimore, Jacksonville Shands in Florida, Massachusetts General Hospital in Boston, the Washington University Neuromuscular Center in St. Louis, the Cornell Weill Center for Peripheral Neuropathy in New York City, and the Jack Miller Center in Chicago.

Others can probably add in a few more, but these, in my experience, are the most dedicated to the condition.

As to treatments, things very much depend on what is causing the neuropathy, if that can be found. Good blood sugar control is essential for those with diabetic neuropathies. Supplementation may prove helpful for those with this and other metabolic neuropathies, and for toxic neuropathies (including those caused by chemotherapy). Of course, in toxic cases stopping exposure to the toxin is important (if that's doable). In certain autoimmune neuropathies, immune modulating treatments such as IvIg may be important.

It really is very individualized.

[Susanne C.]

Remember that just because you are diagnosed at a world-class facility doesn't mean there is a cure or treatment. They are simply more likely to pinpoint the problem. This is still not always possible, and many neuropathies, like mine, do not have treatments. One treats the symptoms not because one's doctors are incompetent but because that is all that can be done and it does improve one's quality of life.
I was sent to Johns Hopkins for extensive testing and a second opinion. They found nothing different than my primary neurologist, she just wanted to be sure since I was 47 and losing ground. Chasing a diagnosis at a big name facility is probably not the best use of one's resources, although a second opinion is always in order. I just happen to live within an hour of Hopkins.

[mrsD]

There is only one "treatment" today --actually two.

IVIG and Rituxan for severe autoimmune demyelinating PNs.
These are horrifically expensive and only work for specific cases.
Sometimes even they fail.

Symptomatic control is not really "treatment" as it does not typically
change anything, only provide some if any, relief from discomfort.
The trade-offs for symptom control typically are high and other side effects can be significant. Doctors can offer these drugs, like gabapentin etc, and that is about all they will do.

What you get from a doctor is a "diagnosis" if you are lucky, that will point you in a direction where you may be able to heal yourself. It is the very rare doctor who can help with healing.
Mostly that is up to you. There are some neurologists today who will suggest lipoic acid or acetyl carnitine. But they are the exception rather than the rule.

If you have a gluten intolerance or other food intolerance or continue to expose yourself to whatever the trigger is, you will continue with the PN and possibly progress.

If you have vaccine reactions, and continue to get vaccines, you will continue to have PN.

Hereditary genetic causes, at this time are not understood well at all, and interventions for those are unknown.

If your blood sugars go up and down suddenly and consistently due to consuming alot of sugars, you will always have sensory symptoms.

The longer you have a metabolic PN, the longer it will take to help heal it. Shorter PN time frames often give faster results when healing nutrients are tried.
My PN in the feet and hands took just over a year to get better with thyroid hormone. All that time I had endless tingling as the numbness wore off. That is just one example, that was my experience.

[Sallysblooms]

Yes, we have to do the work and heal. Before people could help each other online, it sure was sad. Now, you can read studies from doctors, read about supplements, and learn how to heal from others.

[Shezian]

Well l am from Australia, and l really know that the Perth hospital have some kind of expertise in NP. But if l knew l would get better diagnosis in US, l would definitely go there.

The icing, sounds very scary.

Hope it never, ever comes to that.

MrsD, you are fortunate you found the cause. My thyroid was found normal today. So l wonder wha is causing this. Probably autoimmune problems of some kind.
Have buzzing in head at the moment. Ahhh, it just never ends.

Sue

[RideOn]

Originally Posted by Shezian

Well l am from Australia, and l really know that the Perth hospital have some kind of expertise in NP. But if l knew l would get better diagnosis in US, l would definitely go there.

The icing, sounds very scary.

Hope it never, ever comes to that.

MrsD, you are fortunate you found the cause. My thyroid was found normal today. So l wonder wha is causing this. Probably autoimmune problems of some kind.
Have buzzing in head at the moment. Ahhh, it just never ends.

Sue

Hi Sue I'm in Perth, which Perth Hospital has expertise or do you know the name of a specialist

My symptoms are also all over the place and I wonder how much of it is worry and stress.

Thanks, Steve

[Shezian]

Royal Perth Hospital, DR Wai-Kuen Leong.

She seems to specialise in NP, l think.

Sue