Hello all,

I have posted about my journey so fat with PN (feet and legs). About three weeks ago i developed what I thought was a bladder infection (I have had very occasion bouts of cystitis in the past) I had antibiotics (-three day course) but that did not stop it. Urine test does not show any infection. This is getting worse to the point that I have a pulsating and burning feeling in that area all the time. Cold this be related to the PN, I have heard something about automatic PN. Any advice/suggestions. My Dr and the Neuro I saw a week ago thing it is all anxiety related. I suppose it could be as I have been very anxious since all these weird things have started happening to my body.
Thanks.
Lupin

I think that "anxiety" is the ultimate cop-out for incompetent and/or lazy doctors. Many of us here have had that label put on us, but I can't recall anybody in three PN forums whose PN got better from psychotherapy. Invariably, a physical basis to the PN is found. Here are some interesting questions for Dr. Quack and Dr. Neuro Tic to try to establish the basis for their diagnosis of "anxiety":

- There is a difference between anxiety and neurotic anxiety. Anxiety during an armed robbery is not neurotic, and neither is anxiety about serious chronic health conditions

Neurotic anxiety, on the other hand, is irrational and maladaptive. Examples are phobias, extreme social insecurity, extreme foreboding about the future. Even if you have a clinically diagnosed neurotic anxiety, I don't think there is any evidence that it can cause PN or bladder problems.

- Did you have a complete psychiatric or psychological examination to establish anxiety? If not, what is the basis for their diagnosis?

- What tests were run to establish that there is no autonomic neuropathy in the bladder area? I'd wager none.

- PN can cause serious bowel and bladder problems. See http://www.emedicinehealth.com/bladd...article_em.htm .You can check goggled sources at http://www.google.com/search?hl=en&s...y+&btnG=Search. If the symptoms fit, maybe your doctor can explain why you have those symptoms, an established aspect of PN and how they could have been unaware of such a linkage.

- You need and deserve effective physicians who treat you with respect. A decent primary care physician can steer you to a competant and caring urologist.

- I hope you change your user profile to always display the location where you live (use the "User CP" button on the horizontal menu near the top of the page, then click on "Edit Profile"). This will enable others in your area to recommend doctors to you. Nobody is interested in your real name and address, just the general area. Switching physicians in or near a metropolitan area is a lot easier than in rural Podunk. Wherever you live, there may be another forum member living in the same area who could help steer you toward decent medical care and other local resources.

- You're not alone and you're not helpless, even in the face of doctors who bully you. This forum is a valuable resource you can use to empower and enlighten yourself, and actions you can take to become healthier.

I don't know why the previous post doesn't word-wrap to fit the page. Yet. I posted a reply to Silverlady, which looks fine.

Can anybody suggest how to get the formatting right, or is the problem just on my PC for just this thread?

It must be caused by anxiety.

Hi Lupin:

I can only speak from experiences about what happened to me over 10 years ago with my bladder.

I had been a diabetic for about 9 years at the time. Not well controlled either. I had never had a bladder infection in my life. One day, I had the pressue, etc. they did the dip stick thing, they found protein in my urine, they put me on an antibiotic but it didn't help. Then they did another urine test, sent it out and I'll never forget being in the urologist's office and he says to me "wow, your infection mutated, first you had streptococcus bovus, now you have cleptsiella pneumonae (or some such words), never forgot what he said, but I can't spell them. It seemed that my bacterial infection had mutated and I had something like 25 million colonies of bacteria. All I know is it sounded awful. They cleared it up with various antibiotics.


Then, after that infection cleared up, one day, BOOM. All I had was pressure down there. I felt like I had to urinate 24 hours a day. But I urinated just fine. There was no burning when I urinated either. With a bladder infection (at least with most of them, you have the urge but nothing comes out. This was not the case with me. I went to doctor, after doctor, urologist after neurologist. They took pelvic sonograms, they did cystoscopes. I went crazy.
I had this 'PRESSURE" down there all the time. It really never went away. Oh, there was an occasional day when it left, but usually it was ALL DAY LONG. Oh, by the way, EVERY SINGLE URINE TEST, came back negative. No infection!!!!!

Then, soon after, I began a 4 year journey of PRESSURE, ALWAYS THE PRESSURE, the feeling like I had to go to the bathroom. It nearly drove me out of my mind. They had to give me pain meds.

And they did urine test after urine test. I remember once taking myself to the emergency room demanding that they DO SOMETHING!!! and the kindly older doctor did a dip stick test and found, just a trace of bacteria. Nothing to be alarmed about. I almost went crazy. Then I remember asking another urologist, "how do you know I don't have interstitial cystitis" (look that one up, it's a doozy). The guy said "oh my god, no one gets that".

Believe me I felt no relief for almost 4 years. (And all during this 4 years, I was having a lot of stress over my son). This part is important.

So one day my doctor give me a prescription for muscle relaxors. I said "oh, he thinks its spasms down there. Okay, that makes sense, I used to have spasms in my chest, in my arms, so maybe this is spasms".

I never even filled the prescription. I was going to do this the following day. I will never forget that night if I live to be a hundred years old. I was in the shower and letting the hot water just go over my whole body, telling myself that when I filled the prescription for muscle relaxors, that my body would stop spasming. Well, guess what happened? That night, right there in the shower, THE SPASMS STOPPED!!!!! Never came back.

I was absolutely astounded. No one has ever been able to explain why, for 4 years, I had this thing down there that made me think I had to pee 24 hours a day, then I take a hot shower one night and it goes away.

Recently, (with Alan in the hospital and all the stress I've been under), guess what has been happening to me? The muscle in my right arm, (high up) (where a doctor would give you flu shot), has been spasming like crazy. I just looked at the muscle and there it was twitching away. I also used to have eye twitches at times. It's stopped for now.

So that is my story on (I called it bladder spasms) because I have no idea what else to call them.

I do hope you find your answer.

be well,
Melody

Wings - maybe your computer needs a sedative!

Seirously Lupin - some really good info there from Wings - dont let the docs just pass you off as overwroght or axiety ridden etc.... it IS a cop out..... yes, PN can and does affect bladder function - if it continues does your insurance allow you to see any doc you want - if so, I'd see a urologist if you can.....

Hope you feel better

This is what I thought and I will take this up with my GP (general practitioner) and with the Neurologist at the hospital when I get the follow up appointment, which knowing how things work will not be any time soon. If I just get another fob off I will ask my GP to refer me privately to someone else who specialises in PN.

Why not within the next week? It might be OK for you to worry and wonder without knowing what's wrong and without a doctor's help to find out, but it wouldn't be OK with me.

Are you hoping it will get better by itself? It might, or you might have something that could be easily relieved. Or, it could get much worse. Or, you could be reassured so you didn't have to worry about it.

I don't understand not persueing this with Dr. Quack and Dr. Neuro Tic. If you're not comfortable talking with them, why stay with them? Most HMO's allow you to change Primary's with a phone call. You're liable to get a young doctor, hopefully service oriented and without an attitude. If your arrogant and possibly chauvenistic jerks are men (assuming that you are a woman), you might be more comfortable with a woman physician.

A great primary care physician is the most important person to help you deal with your health issues. I have two great ones now...they're mothers tag teaming half time each. I love and trust both.

You probably have either a bladder infection or a UTI...not uncommon at all. Since I started w/my PN, I'd had two UTI's and anti-b's knocked them out soon enough. Granted, that warrented a visit to a urologist afterward as I'd had the 2 uti's w/in an 18 month period...I'd rather see a urologist than a periodontist any day!
I only KNEW I'd had them as I'd gotten a doozey while very young [comparatively] and ended up in an ER! Good thing my GP du jour was there! The PN and the Stress of the PN is knocking you down overall. Don't let this one EASILY FIXABLE issue get you down further!

Call on Monday, make the call and ask your GP if you should see him/her or go directly to the urologist...that way YOU've documentation that your concerns were serious...IF a urologist could see some signs of true dysfunction, THAT doc would let your GP and neuro KNOW ASAP. Believe me!

Let us know how it's all doing! - j

Thanks again for all your advice.

What amazes me is that you all seem to be able to get access to Drs and ask for the tests, procedures and treatments you think are needed. Here in the UK you basically get caught up in the National Health Service (NHS) machine and have no say over when you get appointments to see Drs and what they will do. Even to go to a Dr privately you have to get a refferal from your general partitioner (GP), so in that sense you are reliant on your GP as to how you can access private care. At least if you go privately you can ask for various test and treatments, on NHS you are given what the particular Dr thinks and then you are just a person “in the system” the system controls who you see and what tests and treatment you get, there is very little personal choice. For example although I saw the neurologist on 5 March and he ordered Evocked Potential tests I am still waiting for the letter telling me when these will be done. I would like some of the tests which look into autoimune issues but I cannot ask that thay are done unless this is Oked by the neurologist and so far I am pretty certain that he will "call it a day" after the Evocked Potential test, but I will ask him about autoimune issues. So the only way I could take this further if the neuro does call it a day is to opt out and go privately (and for this I need GP approval!). When I was under the care of the orthopaedic consultant (if you recall I had an injured ankle and suspected tarsal tunnel), he wanted nerve conduction studies, there was a six month waiting list so in the end I did opt to go privatly (got OK from my GP) and had the tests done within a week. I felt uncomfortable about opting for private care as the more work the same Drs do for private patients the less time they have to work in the NHS and therefore the longer the wating lists for NHS treatment. I will no doubt end up seeking further investigations and treatments privately but this makes me sad as it is not right that because I can afford to “go private” and others cannot.

I will keep battling on to get what I feel I need and deserve from the system, after all I pay for it through my taxes.

Don't get me wrong, the NHS is a great thing if you have a life threatening condition or one which has a name and a defined path of diagnosis and treatment, but for something like PN, and no doubt this applies to other hard to diagnose chronic conditions, I am fast discovering that there is an unwillingness to really offer a full range of tests and treatments. The NHS is underfunded and it is all a bit of a postcode lottery, that is if you happen to live in an area where there are Drs with particular specialisms you are lucky and if you don't then .......I could break into a rant about the politics and our government's ineptitude in running the NHS but as most of you hail from the US it probablely wouldn't mean much to ya all.

It is just interesting to me that heath care in UK is hailed as the greatest and that we should be grateful we have it and that is much better that the system in the US, but from what I read here you all seem to get the better deal!

Anyway, I cannot tell you how glad I am to have found you all, I still feel a bit like an interuder into your “PN community” but I intend to “stick around”.

I hope some of our members in the UK will lend you some support and guidance in dealing with the beaurocracy. Asking for that support and guidance is certainly worth startig another thread. Now that you edited your User profile so that the "Location" box has "U.K.", that will alert other Brits to pay special attention to your posts.

You are the reason we are active here, and your participation helps others. I'm sure others in the UK have your dilemma and would benefit from solutions suggested for you...thus you are not at all an intruder.

This is off topic, but it's miraculous to me how the internet allows people from all around to world to touch each other directly and personally. Here I am in San Diego, 10,000 kilometers away from you, having an intense conversation.

So, how's the weather your way?

Good luck.