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.

mumof3,
FWIW, I am also a 41-yo male with PN, have had it for 7 years. Get some tests run to determine whether or not it is likely neuropathy, and try to find a cause. High blood sugar (diabetes or or less severe glucose intolerance) and vitamin B-12 deficiency are common causes. In the meantime, have him eat a healthy diet, exercise, and maybe try some stress reduction techniques. Supplements are benefiting some of us, for example B-12 (as methylcobalamin), magnesium, alpha-lipoic acid (or r-lipoic acid), evening primrose oil, acetyl l-carnitine.

Visit this page http://sites.google.com/site/basicpoke/neuropathy
and see "Neuropathic Pain Questionnaire" and "Nutrients for Neuropathy," which are from the book "The Numb Foot Book."

Electron

mumof3,
If you live in the UK or not- the Liza Jane spreadsheets list all the tests for every possible form of PN. These tests are available universally. and if some places are not equipped to do them, Johns Hopkins has a mail-in kit for the skin punch biopsy that any GP can follow instructions on how to obtain the samples and send then off.
These spreadsheets were designed for PN'ers by PN'ers and medical professionals.
Use them, they're free.

The site is http://www.lizajane.org/

Mum of 3? I understand how much harder it is in the UK to get 2nd opinions?
 

But, can he go to a neuro specialist who's not in network and get the testing done? AND thus a diagnosis? Or, can you go to another GP w/the line 'we aren't communicating well' and get another doc to look at him? IS there any wiggle room in your medical system to have another doc's opinion and look-see? Here in the US it often takes 3 months for a new patient evaluation ... I'm betting it's longer in the UK and ONLY WITH a GP referral, am I right?
There is a PN resource in the UK...web up 'Peripheral neuopathy UK' and I'll bet you'll find it...Maybe they can steer you to better ways of 'doing things'? I don't know.
One of the hardest things about PN is getting a good diagnosis from the 'get go'! Then treating it before one becomes too crippled or emotionally drained to cope with it.
Keep trying, PLEASE! And, let us know how things are going, too? We Like to know if something HELPS? OR NOT!
Hugs and good things to the both of you! :hug::hug::hug:'s - j

Opps--sorry about that--
 

--my typing apparently is not as good as it should be (and thanks to Electron for correcting my mistake with the Liza Jane site).

I realize, mumof3, that being in the UK might complicate things insofar as getting other doctors/opinions, but as you'll see from the Liza Jane site, your husband has hardly scratched the surface as regards potential diagnostic testing. I know that in the UK the general practitioners serve a very strong gatekeeping function, but continue to advocate to get him to a specialist. And the age of 41 is hardly too young to get neuropathy--while it shows up more often in older people, it is hardly exclusive to them (as you can see by the participation here).

Thanks for all the responses :D

I am aware that we've only scratched the surface of PN, which is why I joined you guys - I'll do whatever it takes to get the right or wrong diagnosis, I am the pushy one as far as health issues go in our family.

I did gather that any age can get PN after reading through some of the posts, if I was in the consultation room at the time the GP said this, I would of been quick to put him right.

My hubby did mention to another GP about these pins and needles whilst being treated for a back problem, but this GP dismissed my hubby, saying he couldnt deal with two things at one appointment.

I do feel that the original GP, who my hubby saw on monday, is now doing his best to put things right, but like I said, I have lost faith.

GP says it will be approx 8 weeks before he'll get to see the neuro specialist - I will go with him for this and shall be asking all the questions my hubby will not think of.

In the meantime, I shall continue to research things and thank you for the websites etc - I'll keep you posted.

Hi Mum of Three
I am also in the UK and would like to prepare you for more than an 8 week wait, Neurologists are thin on the ground here and it has taken me quite a considerable time to be seen and I haven't even had more than the blood tests. I have had symptoms since my early 30s and diagnosed by my GP 2 years ago- I am now 44.
Good luck to your husband and best wishes.

Trick we use here in the US? Mite work?
 

Say you're open to any cancelled appointments provided there's a few hours notice? You bet folks cancel and you could be squished in sooner! Eval Consultations take longer than regular office visits? But if one is cancelled? YOU ARE LIKELY IN! Just prepare to stop and change directions in life for that cancellation! AND don't ever ASK why that someone else cancelled.
Your initial GP should be apologetic! AND he should work his *ss off to make up for such a mistake. Ask for and request a copy of what he's sent to that insurance company to correct that issue? Or it could become a problem for life regarding disability in the future-His[docs'] mistake, unless you have proof that it's had attempts to be corrected, are not good things to have in files!
Good luck! Keep faith that it's likely something 'simple' - I hope and pray that it is! :hug::hug::hug:'s - j

Hey Malawigirl08 - Can't believe you've had symptoms for so long and only got diagnosed a couple of years ago :( My hubby has had his symptoms for around five years. We do seem to wait ages in our medical service here in the UK. Got a referral letter this morning, made the appointment online - 5th Oct, not too bad, was expecting to wait longer. I shall be going with my hubby to ask all the questions he won't ask :D

dahlek - thank you, hubby got a copy of the letter the GP wrote to insurance and he has very openly admitted he was wrong to diagnose as there are no other symptoms and he is not a neuro specialist! I get the feeling he will be more than helpful with regards to my hubby's symptoms.