PN not so sure????
 

Hi, I'm looking for some advice/support.

My husband, un beknown to him until very recently, has been diagnosed with PN. :confused: He mentioned to the GP 16 months ago, that he has constant pins and needles in his hands and feet and has done for some years now. The GP gave no verbal diagnosis, but did diagnosed him on his medical records. We found this out when applying for life insurance and was refused on the basis of my husband having PN.

If PN is serious enough to be refused life insuance, why hasnt my husband been told - he has had and not been offered any tests and has no other sypmtons, apparently the GP emailed a nerve clinic 16 months ago and was told that as my husband has no ther symptons, they cannot give a diagnosis of NP.

The GP won't remove the diagnosis on his medical records :mad: as he said that there obviously is some kind of nerve damage?? But to me, its like going to the GP with a lump and being told you have cancer without any form of testing?? Being the wife, I have demanded that this GP see my husband again and refer him to a specialist.

I suppose what I'm wanting to know if anyone can help, is it normal for a GP to make this diagnosis without knowledge from a specialist or testing??

Is it also common to have PN with just the sypmtons of pins and needles??

We have also checked throughout the family and there is no history of any kind of nerve problems.

Thanks in advance

Hi mum. My GP diagnosed me with PN too. She ran some bloodwork which didn't show any diabetes or B12 deficiency, then pretty much just said "oh well." I didn't figure out until about 1-2/2 years later that I should see a specialist and pursued that all on my own. Fortunately, I had/have health insurance that allows me to do that.

I don't know if this is the normal reaction or not from a GP but it did happen to me too. You certainly are right to want a specialist to get involved!

Absolutely! Textbook symptoms!

If you are able, make an appointment to see a neurologist, so you can get an idea of what the extent of his PN is. Skin biopsy is the gold standard for testing for PN, it won't always show on EMGs or other tests.

25% of PN is idiopathic, the rest is due to some other disease and PN is a symptom of that condition. I would like to know if something is brewing or if it is idiopathic.

Yes, PN can be significant. It can be a harbinger of another disease, or on its own, it can become autonomic.

I can understand mumof3's thinking on this, although I've been leaning the other way. I went to a rheumatologist and he diagnosed my PN. I'd like to draw the line there and not go to a neurologist, and then the next "specialist" after that, and then the next, and all the way down the line. I can't stand doctors, doctor's tests and doctor's bills. Am I making a mistake here?

If you are content to not know if this is neuropathy and if you are sure it is not treatable, and if you don't care to know if it is autonomic.

I get much better care from my neuro than any rheumy has given me, and I am highly + on ANA.

cy,

Can you fill me in on how they determine whether or not it is autonomic? Is there a positive diagnostic test(s), or is it the same old game of "We're pretty sure that's what you have" or, worse, "You're not autonomic now, but we can't say anything about what you will be tomorrow"?

Thanks.

Nerv


P.S. My rheumatologist was so sure of the diagnosis of PN that he said the neurologist for a biopsy would be a waste of time. We didn't really discuss autonomic.

Yes, they do an autonomic battery consisting basically of a tilt table test, QSARTS, thermoregulatory sweat test, R to R breathing, Valsalva testing. Then if there are GI complaints they test your for gastric transit time and a few other things.....can go as far as manometry, which mine did.

Hey, thanks for all the comments :)

My hubby went back to the GP that diagnosed PN, yesterday evening. He was very apologetic and removed the diagnosis from the records (for now) - this is not to say he doesnt think my has PN, but without further tests etc and the GP not being in the neuro field, he has decided he was wrong to diagnose at this stage.

Hubby has asked for whatever tests need to be done to rule PN in or out and is now awaiting for a scan on his neck :confused: and also awaiting an appointment with specialist. GP has suggested that hubby may have a cyst in his neck that is causing the problem in his hands - this is related to a lump my hubby has in his lower back next to his spine (which he is now told could also be a cyst that is causing the problem in his feet) He had blood work done for the lump in his back, back in March which came back normal as far as growths are concerned :D

We have done, what I presume is only alittle research on PN and currently, cannot find out a primary cause if he does have PN, hopefully with the help of a specialist, we will find out more, but will continue to research further ourselves.

Thanks again for the responses

Personally--
 

--I think mumof3's husband has gotten a raw deal from his GP. Such as process as she describes is just not ethical, and has had delterious consequences.

Beyond reporting the GP to the appropriate medical board, I would start over again with a specialist, if possible--it's certainly possible that his symptoms are casued by spinal problems, not necesarily more systemic neuropathy-causing conditions--but that needs to be determined. Some forms of nerve damage are treatable or arrestable, and it's worth trying to find out if he's got something that can be mollified, especially as his symptoms right now seem limited. And, he may have a circulatory problem primarily--there's no way to know without some further testing.

Once again--it's time to trot out the Liza Jane spreadhseets:

www.lizjane.org


--excellent for suggesting tests and tracking results over time.

And, mumof3, if you've gotten his medical records, make sure you've got them all--test results as well, if any, and all notes/comments, and bring a copy to a neuromuscular or neuropathy specialist. There are a number of neuropathy centers around the US that do comprehensive testing/diagnosis--Massachusetts General in Boston, Cornell-Weill in NYC, Jacksonville (FL) Shands, Jakc Miller in Chicago, University of California/San Francisco, Johns Hopkins in Baltimore--that you might want to consider contacting. At the very least, you'd want him evaluated in a teaching hospital/tertiary center with an extensive neurology department.

Hey Glenntaj - I think my hubby got a raw deal too. It was myself who demanded this GP telephoned immediately to discuss this diagnosis, I ask him whether he thought it was fair to diagnose my hubby with PN when he has no other sypmtons and has not had any related tests - during this call, he said it was fair - I responed with, is it also fair to diagnose something 16 months ago and NOT inform the patient!

To add to my earlier post - after my hubby's visit to the GP yesterday, he also says that it is very unusual for someone my hubby's age to have PN?? (he's 41) - he also did various basic tests such as reflexes, muscle tone/strength, blood pressure etc and also the previous blood tests showed no deficiencies, or diabetes etc - everything was normal, but I have lost faith and I'm definately not ruling out PN until the appropriate specialists say so.

Glenntaj - thanks also for the neuro listings, unfortunately I live in the UK, but thank you anyway.