frustrated

February 8, 2008

I think most of you are probably sick of hearing about my trying to diagnose myself, but I just needed to vent a little today. I called my gyn today ( the one that initially diagnosed me with levator ani/vestibulitis) in April 2007 and then changed the diagnosis to PN/Vulvodynia in August 2007. I am still frustrated although my pain has decreased considerably from last year at this time, I still have the ongoing urinary issue (burning on occasion and when my bladder fills up like I have to urinate and I pretend to- but hold it- it burns actually kind of when I let my pelvic muscles relax as if I am going to urinate but don't. So although the pain has decreased, I still have always had this issue so I don't feel completely back to normal. Plus, I have been getting strange sensations jabbing, electrical shock type pains in my buttocks and vagina that I never experienced before.

Anyway, I was calling my gyn today and its been awhile since I was there (August) and his nurse was trying to answer my questions, its so frustrating when you cannot actually speak to the doctor without making an appointment ( he is 2 hrs away). I was asking her about the urinary burning and she didn't think it was related to the PN issue, but this all started at the same time.( She also said my diagnosis is PN/Vulvodynia which makes no sense to me because doesn't PN have a cause yet Vulvodynia is when there is no known cause?? She also said that the gyn would have referred me to a bladder specialist had he felt I had IC, but apparently he doesn't. Its so odd because my pain has gone away before once during the summer for two month (although like I said the urinary burning has always stayed) She said alot of woman go on meds like elavil and their pain subsides and they go off the meds and the pain comes back so they go back on them. I haven't taken the elavil since the end of november and I guess Im concerned about the pain returning. My neurologist thinks I should try cymbalta and this gyn thinks I should go back on the elavil. I guess Im frustrated because I feel neither really is addressing this issue and I don't feel confident with either.

Has anyones pain left completely while on meds to have it return when they went off the meds? Does anyone have any suggestions on a doctor that may be able to tell the difference between IC and PN or can accurately determine whether one is causing the other?

thanks for your responses

CWho's never won? Biggest Grammy Award surprises of all time on AOL Music.

February 9, 2008

C,

It doesn't sound to me like your docs know what they

are doing. Not unusual since nobody has gotten

anywhere in determining a cause.

If you go to a urologist, she will look inside your

bladder and be able to tell you if you have something

called they call IC. As far as I know that is the only

way to find out.

There is a neurologist at Cornell named Dr. Latov who

has published in the Neurology Journals that all

patients with any kind of neuropathy should be tested

for Gluten Sensitivity. Your neurologist apparently

hasn't read it.

Here is a snippet from one article on the subject:

" Patients with celiac disease/gluten sensitivity

tended to experience small fiber neuropathy, which

causes severe burning, stinging, and electric shock

type pains. This type of neuropathy frequently is

misdiagnosed because it is not detectable using

routine neuropathy tests. Treatment for celiac disease

consists of altering patients' diet to eliminate

gluten and foods that contain wheat "

Does the electric shock thing sound familiar?

http://findarticles.com/p/articles/mi_m0FSL/is_1_78/ai_105439645

It also stands to reason that if one is sensitive

(autoimmune attacks) to gluten, which courses through

the urinary system, her bladder might well be affected

and turn out to be cut and abraised and painful, etc.

This is an autoimmune disease and not an allergy.

I think your IC symptoms and PN are related and they

both likely have a cause but they don't cause the

other. The cause may be gluten. It is well known to

cause urinary problems and gynecological problems

although nobody much seems to want to own up to it in

the medical profession.

If your problem is gluten, and it likely is, you can

completely recover from this without medication. The

medication doesn't cure anything. It just attempts to

mask the pain and symptoms.

I suggest you order tests from

http://www.enterolab.com to see if you are sensitive

to gluten and from no place else. The blood tests

won't very likely diagnose you and that is all the

docs use. This lab has state of the art tests. LIkely

it will be the best investment you ever made.

Even if one has the Pudendal Neuralgia thing, once

again it is something attacking the nerves. The

electric shock thing is undoubtedly a nerve thing.

Gluten can do it all.

Arline

C wrote the following:

strange sensations jabbing, electrical

> shock type pains in my

> buttocks and vagina that I never experienced

> before.

>

> Anyway, I was calling my gyn today and its been

> awhile since I was there

> (August) and his nurse was trying to answer my

> questions, its so frustrating

> when you cannot actually speak to the doctor without

> making an appointment ( he

> is 2 hrs away). I was asking her about the urinary

> burning and she didn't

> think it was related to the PN issue, but this all

> started at the same time.(

> She also said my diagnosis is PN/Vulvodynia which

> makes no sense to me because

> doesn't PN have a cause yet Vulvodynia is when there

> is no known cause?? She

> also said that the gyn would have referred me to a

> bladder specialist had he

> felt I had IC, but apparently he doesn't. Its so

> odd because my pain has

> gone away before once during the summer for two

> month (although like I said the

> urinary burning has always stayed) She said alot

> of woman go on meds like

> elavil and their pain subsides and they go off the

> meds and the pain comes

> back so they go back on them. I haven't taken the

> elavil since the end of

> november and I guess Im concerned about the pain

> returning. My neurologist thinks

> I should try cymbalta and this gyn thinks I should

> go back on the elavil. I

> guess Im frustrated because I feel neither really

> is addressing this issue

> and I don't feel confident with either.

>

> Has anyones pain left completely while on meds to

> have it return when they

> went off the meds? Does anyone have any suggestions

> on a doctor that may be

> able to tell the difference between IC and PN or

> can accurately determine

> whether one is causing the other?

>

> thanks for your responses

>

> C

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February 9, 2008

C.,

Here is a google page which seems to have references

to articles about " electric shock " and Celiac/Gluten

Sensitivity.

http://www.google.com/search?hl=en & q=neuropathy+celiac+electric+shocks & btnG=Goog\

le+Search

Ar

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February 9, 2008

C.,

Here is a google page which seems to have references

to articles about " electric shock " and Celiac/Gluten

Sensitivity.

http://www.google.com/search?hl=en & q=neuropathy+celiac+electric+shocks & btnG=Goog\

le+Search

Ar

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February 9, 2008

This article is about a forum and there is a girl who

had PN who discovered she had gluten problems.

http://brain.hastypastry.net/forums/showthread.php?t=263

Arline

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August 18, 2008

Amy

Research on the net was my discovery point for nasal irrigation. It

is an ancient cure for cleaning sinus and nasal crusting. There is a

bulb nose syrange that they sell for this in any drug store _ but it

was just not strong enough for me>

i ORDERED the nasal adapter from water pik directly on the net.

Why didn't the ENT tell you .... who knows - mine didn't either and

that was even after a biopsy for the active accumulation - how about

that.

Don't forget to use salt water - natural cleaner - and you can either

get little packets or make your own solution. Do some research on

the net and I'm sure you will find out more info.

Good luck and let me know if this helps.

a age 64

IPF 07/fibromyalgia 98, Asmaha, chronic broncitis 07

CAD rejected for tx last week due to other medical conditions

>

> a: I have a deviated septum and this sounds great why my e n t

did not sugest it I do not know or why I did not think of it. Where

did you get yours with the nasal attachment? I am not familiar with

the oxy mask I am going to research it. This sounds promising.

> Amy

>

> Re: Frustrated

>

> Amy Dawn,

> I don't know if will help you or not, but it does work for me. I

> have a perfurated septum and have the same symptoms you describe

with

> my nose. WaterPik has been my answer. I use my water pick -

> sometimes two times a day to cleanse and moisture the interior of

my

> nose. It gets the junk out. I use low water pressure, warm salt

> water solution. It comes with a nasal adapter, but it wasn't enough

> pressure to clean me.

>

> Then I use KY Jelly to moisturize (just a little) the inside of my

> nose for the night,

>

> I just finished getting a workup at Mayo, and my Doc is going to

try

> me on an Oximask as well. I don't have it yet, but it looks

> comfortable in the picture.

>

> a IPF, Fibromyalgia 3l 24.7

> Hilton Head, SC

>

> >

> > Amy Dawn, I'm sorry this isn't a good day. We all have them, so

> don't be

> > concerned about dumping on us.

> > About the O2...I find that the liquid Oxy with the humidifier

> actually

> > help! Try the saline spray and there is a very good brand of

> Saline gel...

> > Ayr. The entire line of products is really soothing. You have to

> try

> > to get your nasal passages to be clear

> > so that the O2 can get where it needs to go! You may also want to

> look

> > at some other type of cannulas that don't make you feel

> > so blocked..There is a site I use...Tinashomecare .com...they

have

> all

> > different types.

> > Also, ask your O2 provider about different cannulas.

> > .

> > I hope tomorrow is better.

> >

> > Z 64, fibriotic NSIP/o5/PA

> >

> > And " mild " PH/10/07 and Reynaud's too!!

> >

> > No, NSIP was not self-inflicted. ..I never smoked!

> >

> > Potter, reader,carousel lover and MomMom to Darah

> >

> > and Sara

> >

> > * " I'm gonna be iron like a lion in Zion " Bob Marley*

> >

> > *Vinca Minor-periwinkle is my flower*

> >

> > * *

> >

> > * *

> >

> > Amy Dawn wrote:

> >

> > > Thanks Dale and Bruce I should look for another one I am just

so

> > > frustrated have had this stupid disease so many years too old

and

> too

> > > many other diseases for a transplant. It is like why bother

what

> can

> > > they do. I cannot breathe half the type my nose is so dry and

> blocked

> > > if I take my O2 off I breathe so clear and nice then of course

it

> > > drops put it back on and block up. Any suggestions I know this

> sounds

> > > crazy and probably is I am on liquid and use the humidifier

would

> > > using it without be better like I said it really sounds crazy

but

> > > anything is worth a try.. My dr wrote a prescrip. for saline

> water and

> > > I rinse my nose with that. It sounds like I am feeling sorry

for

> > > myself but when you reach the point that you cant do anything

> and

> > > walking to the other room is a chore why bother. Thanks for

> > > listening. Oh yeah I have xanax for when I am really freaking

> out and

> > > it helps but no one wants to be around me as they wear off

> because I

> > > am so grouchy and I don't want to be loaded all the time. The

> pul.

> > > also said it is a slow long suffering disease no duh how

> encouraging.

> > > Amy

> > >

> > >No virus found in this incoming message.

> > >Checked by AVG - http://www.avg. com

> > >Version: 8.0.138 / Virus Database: 270.6.4/1616 - Release Date:

> 8/16/2008 5:12 PM

> > >

> >

>

August 18, 2008

sher

sounds like a wonderful party and i loveeee watermelon

may

>

> Amy ... have you tried Ayr gel, in a little tube for softening a

dry nose? I use it and like it very much.

> I know how easy it is to get discouraged. It will pass

though...just in time to feel discouraged over a brand new thing. lol

> Keep on keepin' Amy.

> ï¿½

> MamaSher, age 70. IPF 3-06, OR.ï¿½ï¿½ï¿½

> Nasturtiums

> Don't fret about tomorrow, God is already there!

>

> ï¿½ Frustrated

>

> Thanks Dale and Bruce I should look for another one I am just

so frustrated have had this stupid disease so many years too old and

too many other diseases for a transplant.ï¿½ It is like why bother

what can they do.ï¿½ I cannot breathe half the type my nose is so dry

and blocked if I take my O2 off I breathe so clear and nice then of

course it drops put it back on and block up.ï¿½ Any suggestions I

know this sounds crazy and probably is I am on liquid and use the

humidifier would using it without be better like I said it really

sounds crazy but anything is worth a try.ï¿½ My dr wrote a prescrip.

for saline water and I rinse my nose with that.ï¿½ It sounds like I

am feeling sorry for myselfï¿½ but when you reach the point that you

cant do anything and walking to the other room is a chore why

bother.ï¿½ Thanks for listening.ï¿½ Oh yeah I have xanax for when I

am really freaking out and it helps but no one wants to be around me

as they wear offï¿½ because I am so grouchy and I don't want to be

loaded all the time.ï¿½ The pul.ï¿½ also saidï¿½ it is a slow long

suffering disease no duh how encouraging.

> Amy

>

August 18, 2008

-

Hi Sher,

Glad to hear that your b'day celeberations went off well and you had

a great time with your family.

Geeta

-- In Breathe-Support , " Sher Bauman "

wrote:

>

> Hi Peggy. .. You are in my thoughts and prayers as well. Always.

So you're covered for " whatever " ...lol.

> I've seen those long lines of gridlock on TV when people are

evacuating. THAT is scary to me.

>

> Keep the board posted, I'll be watching.

>

> The birthday party went great. Lysa had the back yard decorated

with banners, balloons, posters, flowers and colorful table

covers. She put water and soda into an old turtle " sand box "

(cleaned of course!). So cute.

> The food was yummy, just what I love, fat hot dogs, 3 different

salads, huge bowls of watermelon/cantaloupe, baked beans and the

cake was so pretty and I forgot to get a picture of it. I'm sure

there is one. Hannah was taking pictures with my camera, her camera

and the camcorder so there are pictures someplace.

> I'll get some entered of what I have in a day or so. Lysa is

having a disk made for what Hannah took. Boy oh boy! Nobody will

forget when I turned 70.

> Marly (granddaughter) put a tiara on my head and gave me a magic

wand and I was the Princess for the day! How sweet! She was the

princess on her last b'day and wanted me to be the same.

>

> Be safe!

>

> MamaSher, age 70. IPF 3-06, OR.

> Nasturtiums

> Don't fret about tomorrow, God is already there!

>

> ï¿½ Frustrated

>

> Thanks Dale and Bruce I should look for another one I am just

so frustrated have had this stupid disease so many years too old and

too many other diseases for a transplant.ï¿½ It is like why bother

what can they do.ï¿½ I cannot breathe half the type my nose is so

dry and blocked if I take my O2 off I breathe so clear and nice then

of course it drops put it back on and block up.ï¿½ Any suggestions I