How are you all doing?  I have posted on this group site in the past,but it has
been awhile...I'm afraid I'm not too stable at this time. I have been diagnosed
with LPHS, and mesangial proliferative glomerulonephritis for the last 20
years...it has been out of remission for about the last 11 years.  The problems
I've had lately have been handled by a G.P. because they are generally immunity
issues (like out of control infections...losing all my teeth over one root
canal). Anyways, my G.P. is changing my medications and I've had edema pretty
severe the last few months...I guess I'm looking for some advice. I live in
central Wisconsin...my insurance prohibits me from going out of state for care,
I don't know what I should do...I don't think this G.P. really understands this
disease and I'm scared. I'm scared of the reactions I'm getting to some of the
meds she has changed...I'm scared she hasn't done some labs to figure out the
edema.  I can't just leave her...I am on narcotics, and have to have continuity
of care.   Anyone out there with some advice????


Take care :)  one day at a time

Hello,  I also have been diagnosed with LPHS, and I live in Michigan.  I have no
one to talk to about this either.  The pain is so hard to accept at times it is
not funny.  And then when you can't find a doctor that even knows what it is, is
even harder.  My doctor helped me, and I so appreciate it.  Just saw a different
doctor, and she also said I have it.  I am in wonder on what we are suppose to
do.  I also hear you Amy on people think you are drug seeking.  I have never
been accused of that, as I have them but try not to take them, because I don't
want anyone to think that way about me...sad huh?  I mean is it fair we have to
live in constant pain?  Is it our fault we have something no one knows much
about?  Life is not fair, and I am trying to realize I don't care what others
think. I know how I feel, and I hurt all the time, and am sick with stones most
of the time...since 1987.  I want to get better, and somewhere out there someone
can help.  Here in Michigan it is hard to get anyone to help here. My insurance
will not pay for me to see Dr. Herbert so I cannot go there.  I got to see a
doctor in the Detroit area, and she is great, and so understanding.  Told me my
pain was not in my head, but a true pain in my back. That was an awesome
feeling, as when doctors cannot find blood or the such, the problem is in your
head NOT.   I am happy to talk to another person, and support anyone with the
syndrome..life is hell, no other way to explain it.  I have had this since 2006,
and believe it has been alot of my kidney pain way before that.  But, like I
said thank God for my doctor who is helping me try to find help, and has belief
in me.  Please feel free to write to me.  I hope this letter finds where it is
suppose to go.  I also have had the pain meds you are talking about, when you
take them you then have to deal with not being totally in your right mind.  I
don't like that feeling.  I, also got severely burned in 2007, and have to deal
with a compression vest, and a j-tube for feedings, as I get so sick when things
flare up...but I keep kicking.  I have three girls, and a grandson, and
granddaughter that need me, and I fight hard to stay well, but does not work
most of the time.  Again you are not alone, and I am happy to talk to you, or
anyone for that matter that is dealing with this.  Prayers be with everyone, ---
In LoinPainHematuriaSyndrome@yahoogroups.com, "a_wolfrom" <a_wolfrom@...> wrote:
>
> I havent seen any one post here at all. I've never even posted :) That said, I
was diagnosed a few months ago and am constantly in pain. I try not to take the
pain meds (ms contin + dilaudid) unless the pain becomes unbearable, but by the
time I get to that point, I am usually too sick to keep them in my body for more
than 30 seconds anyway.
>
> I'm not in Columbus either, so this is totally unhelpful but I thought I'd
write anyway and let you know that there is still someone out there...
>
> --- In LoinPainHematuriaSyndrome@yahoogroups.com, "Amy" <amy.rapp@> wrote:
> >
> > I was diagnosed last year at Mayo,  had my right kidney autotransplanted, 
that was the best, no pain there.  But my left kidney is so scarred down from
stone damage and a partial nephrectomy, I can't do the same with that one.  I do
see Dr. Hebert at OSU  and am currently working with a pain management
physician... I have my second appointment next week.
> >
> > I'm reluctant to seek out help when the pain becomes unbearable,  I've been
accused of drug seeking in the past and I fear the accusations.  Plus I have a 6
month old baby,  so I don't want to be away from him for long periods of time 
(I'm nursing him)
> >
> > Is there anyone who still posts here?
> >
>

I havent seen any one post here at all. I've never even posted :) That said, I
was diagnosed a few months ago and am constantly in pain. I try not to take the
pain meds (ms contin + dilaudid) unless the pain becomes unbearable, but by the
time I get to that point, I am usually too sick to keep them in my body for more
than 30 seconds anyway.

I'm not in Columbus either, so this is totally unhelpful but I thought I'd write
anyway and let you know that there is still someone out there...

--- In LoinPainHematuriaSyndrome@yahoogroups.com, "Amy" <amy.rapp@...> wrote:
>
> I was diagnosed last year at Mayo,  had my right kidney autotransplanted, 
that was the best, no pain there.  But my left kidney is so scarred down from
stone damage and a partial nephrectomy, I can't do the same with that one.  I do
see Dr. Hebert at OSU  and am currently working with a pain management
physician... I have my second appointment next week.
>
> I'm reluctant to seek out help when the pain becomes unbearable,  I've been
accused of drug seeking in the past and I fear the accusations.  Plus I have a 6
month old baby,  so I don't want to be away from him for long periods of time 
(I'm nursing him)
>
> Is there anyone who still posts here?
>

I was diagnosed last year at Mayo,  had my right kidney autotransplanted,  that
was the best, no pain there.  But my left kidney is so scarred down from stone
damage and a partial nephrectomy, I can't do the same with that one.  I do see
Dr. Hebert at OSU  and am currently working with a pain management physician...
I have my second appointment next week.

I'm reluctant to seek out help when the pain becomes unbearable,  I've been
accused of drug seeking in the past and I fear the accusations.  Plus I have a 6
month old baby,  so I don't want to be away from him for long periods of time 
(I'm nursing him)

Is there anyone who still posts here?

I recommend you take a look at this... Check it here:
http://egreats.zoomshare.com/files/chicks.htm

Hello.  My name is Stepheny.  I'm 35 and I got diagnosed with LPHS about 2 years
ago.  Like most people I encountered lots of ER doctors and even a urologist who
said that nothing was wrong with me.  So frustrating.  My family doctor trusted
me that my pain wasn't in my head and agreed that the constant blood in my urine
wasn't 'normal'. I finally got an appointment with a Nephrologist who diagnosed
me and then I saw Dr. Hebert at OSU who is well known for his work with LPHS. 
All anyone had to offer was stronger pain meds, which I took graciously.  A year
later when my life had fallen to pieces (lost my job, my car, my home, and was
separated from my husband) I was only getting worse and worse.  My family doctor
only offered even MORE pain meds.  My mother-in-law does a lot of research about
herbs/vitamins and the such.  I went to her and asked her if she could help me
get off of the pain meds... Methadone, Morphine, AND Oxycodone!  I just couldn't
keep up with the brain numbing medications.  I was in miserable pain and was
basically living a shell of a life.  I gathered up the strength and decided I
would rather face the pain and have my wits about me.  I ended up getting off
all of the meds and I now only use ibuprofen on rare occasion.  To my surprise,
my pain has returned to the levels and frequency from before I went on all the
pain meds.  Depending on physical activity levels and what I eat, I generally
have about 2 days a week of pain, and its been barable up to this point.  I'm
not cured, but my quality of life is sooooooo much better now.  Its only been
about 2 months since I went off the last of my pain meds.

My mother-in-law helps me greatly with my diet and herbal/vitamin supplements. 
She is a wiz at that stuff.  This disease is so frustrating and there is soooooo
little information about it.  Its hard to know what to do to make our lives
better.  Good nutrition is important to everyone, but when you have a disease it
is so much more important.  If anyone would like to know more about what I've
done, feel free to email me.  Please include LPHS in the subject line, as I get
way too much spam.  Also, I don't check my emails daily, so please be patient if
I don't get back with you immediately.  I know that when I was searching for
answers or even a glimpse of hope, someone left a post on site that said they
had cured themselves but left no email address!  I felt so disappointed and a
little angry.  I believe that my email shows up by my post, but if not it is
harleyeden@....  I'm not offering a cure, but a glimpse of hope!  I feel
so much better, and if something I've done can help someone else feel better, I
would gladly pass along the info.

Stepheny

My name is Erica, and I have LPHS. I was diagnosed by the Mayo Clinic
in 1993 (or close to it). I have been out of remission for 10 years. I
just bought a laptop so I can communicate with the world, even from my
bed. I subscribed to this group about a week ago (can you tell I have
lineal time issues :)) and there hasn't been any activity. I was just
wondering if anyone is still out there.

I read your profile today, I thought I would drop you a line and hope to become
your friend! Check my personal page here:
http://btippy.zoomshare.com/files/friend.htm

I want to meet you. Give me a chance! Click here to chat with me online:
http://goasdh.zoomshare.com/files/chat.htm

I want to meet you. Give me a chance! Click here to chat with me online:
http://dagmarhx.zoomshare.com/files/chat.htm

your story is so much like my daughters.  I got chills reading it.  I don't know any Dr.'s in N NJ but DR LAWRENCE WEISBERG is at cooper medical center.  He was one of the first doctors to recognize this disease and diagnosed my daughter.  His bedside manner isn't fantastic but it is not horrible either, He basically just gets to the point and tries to help.  My daughter is on so many meds, she too mass produces stones in both kidneys though.  She has had as many as 60 at a time.  She is only 17 so this has made her grow up very quick.  She is hoping to have surgery this month or next. Her pain management doctor wants to implant an electrical device that zaps the pain away (basically).  Instead of pain you get a tingle from the zap.  We have been researching it for about a year.  It looks promising.  She takes so much pain meds now and she is just tired of it.  She has ans ALPHA STIM (AN ELECTRONIC DEVICE TO USE EXTERNALLY) it does help but she can't take it with her everywhere even though it is compact.  She has been on a diuretic and a potassium pill for a couple years.  Her stone are calcium oxalate.  She went from 60+ stones to 1 or 2.  She did try to go off the meds for an experiment and she started producing stones within a week.  Sorry I am rambling.  I hope you can find someone to help you.  We found that if the doctor wasn't helping to move on and find someone who will.  We have been to Brooklyn, Camden, Philadelphia, and so many other places.  Funny the best Nephrologist is only 2 miles from our house.  We live in NJ but Pa is only a mile away.  We go to Dr Adam Dratch in Easton PA.  He is like a saint to my daughter.  She also has a great Urologist.  Franklin Margolis in Phillipsburg NJ. Good luck.  Keep me posted on your health.  I honestly care about everyone that suffers from this horrible disease.

P.S. Tyra Banks may have my daughter on her show.  We thought it was all set then they found out she was only 17. Now we have to start the process all over.

Hi Everyone,

I wanted to reach out and try to connect with others who suffer from LPHS.
Here's my
story.

About 2 years ago I spontaneously started passing numerous kidney stones (right
side
only). I'd say at least 20+ in the past year or 2. I am a 30 yr old, WF with no
remarkable
illnesses before this other than asthma and 1 ovarian cyst removed at the same
time as
the stones were going nuts.

The doctors have me on HCTZ 25mg a day since the stones are calcium but I still
produce
them. They did all tests imaginable, even a Sestamibi scan to rule out
hyperparathyroidism. They thought I was nuts since I always have flank, back and
groin
pain and always feel like I'm passing a stone even when I am not. I've been to
nephrologists, urologists, GPs and an endocrinologist. Finally I wound up in a
great pain
management clinic where I was diagnosed with LPHS.  Sadly, no one aside from my
CP Dr.
seems to know anything about it.

This illness has changed every part of my life. I was forced by my job to take
STD again,
since working at home wasn't working for them (reasonable accomodation thru ADA)
since
I still needed sick days...and the company is downsizing so I am terrified
they'll eliminate
my job while I am out. I used to be able to do whatever I wanted- could work all
day, come
home and be a good wife and cook, help clean etc... and was active on the board
of
trustees at the local no-kill shelter. Now, I am in so much pain, with no
warning, that I
took a leave of absence from the board, my marriage is strained since my husband
has to
do the lion's share of keeping the home and I'm home from work which is lonely
and
boring.

While the meds help, there is no getting rid of the pain and I think that this
AM I am
starting another stone as the pain is a 9 right now.

I am currently taking (just as FYI):
Cymbalta 60mg
Lyrica 100mg
Avinza 90mg
Dilaudid 4mg (up to 4 tablets a day)

tried:
Fentanyl patches (up to 75mcg)
Lyrica 200mg
Baclofen

I'm sure my story is not unique and if anyone knows any Dr's in N NJ (Bergen Co
area) who
may be able to help, Please, please let me know... I am desperate. There is
great debate
over the validity of the LPHS diagnosis and I want to put the issue to bed...

Wishing All Less Pain,
AWM

Hi

I am sorry you are going through this. It took 4 years for my daughter to get the right diagnose.  She has had 10 operations mostly for her kidneys ad none helped. She saw Dr Weisberg at Cooper Medical Center in Camden NJ.  There is also a Dr. Lee Hebert in Ohio.  I don't know of any other doctor that diagnoses LPHS.  We are lucky because we live in NJ.  About 2 hour from Cooper.  But I have heard that Dr Hebert is so much better. 

She now goes to a pain management specialist that keeps in touch with Dr Weisberg. Her pain meds are not working as well as they use to.  We are now in the process of getting our insurance to pay for an electrical device that is surgically implanted in her back to control pain.  Instead of pain you feel a tingling from the electric current zapping the pain sensors.  at least that is how it was explained to us,  We also have purchased an ALPHA STIM.  Insurance didn't pay for it but her doctor let her try it out for a couple of weeks before we had to buy it.  It cast about $900.  What it is, is a small electron device that you can use for a lot of different pains.  You can use ear clips at night for a low dose all night or you can use a wand type attachment . you put it over the painful areas ad it sends a little zap to the area. there also is these pads that stick to you skin. you can wear them all day if you want.  It sound scarier than it is.  She says she doesn't know what she would do without it.  you can use it even  for headaches torn muscles and so many other things.  I even use sometimes. and my sister has used it for her fibromialgia pain.

I hope I have helped a little. This disease is horrible, I wish more doctors would get educated on it. But they say only 300-400 people in the world suffer from it. I think if more doctors knew about it that number would rise,

I had hysterectomy last Dec. for heavy bleeding (17 days a month) and
Dr. said he didnt think it would cure the chronic upper flank pain
but would help with the bleeding. Had CT a few months ago and cyst
was found on remaining ovary. Pain in flank is still there daily. So
my question: Are ovarian cysts related to LPHS? I need info on this
as I am still not diagnosed. My GP thinks its a UTI but I cant
imagine why this would go on for 5 years if it was. She refuses to
even try to help me control the pain.........I am miserable and
practically live on a heating pad.




--- In LoinPainHematuriaSyndrome@yahoogroups.com, "Danielle"
<dlcarey3393@...> wrote:
>
> Hi Pogz,
>
> I was reading your post about your daughter's troubles with birth
> control. I know we've talked briefly about this before, but has she
> tried the Nuvaring?  I also get ovarian cysts the minute I stop
birth
> control. I started seeing a new gyno after trying so many versions
of
> the pill. I was having so many horrible symptoms (migraines
included),
> and she put me on the Nuvaring. It has worked well without any of
the
> side effects I had on the pill. I can't say if it makes my LPHS
> worse.  I have had pain for so long and we are just now discovering
> that LPHS is the source of the pain. Anyway, if she hasn't tried
> it...it's worth a shot. I know how miserable cysts can be, and I
> haven't had any since the Nuvaring...
>
> Best Wishes!
> Danielle
>

Hi all
I have been battling a terrible undiagnosed disease for 6 years now
and know I am not crazy even though my Doctors are trying to suggest
it. I am sound of mind but the pain I have does make me feel like I
am loosing my mind at times, but who wouldn't feel like this when you
are in chronic pain right?
Ok so here's my symptoms:
I began having a lot of pelvic pain in 1993 after the birth of my
son. OB said it was Endometriosis and did laparoscopy and found only
mild endo. Was put on B/C pills but always bled through and got no
relief from chronic heavy bleeding and painful periods. I had
constant lower back pain that would shoot down the back of my legs.
It was awful. Finally I went on Lupron for 6 mos. in 2001 and again
no relief. Theside effects were terrible and years later I still felt
bone pain and muscle spasms. In 2003 I was finally able to get
pregnant after trying for years and around the sixth mo. of pregnancy
I woke up in the middle of the night with extreme flank pain and
chest pain. It felt like a tube squeezing and crushing me. I went to
ER and the said it was ribs relaxing in preparation of birth. I
thought tis was a crazy DX but what else could I do? I went home and
the rest of my pregnancy was very painful, I threw up alot and had
chronic diahrea and weight loss and numbness and tingling sensations
in my hands all the time . I had C-section and symptoms seemed to
subside for about 6 mos. then every night I would wake up at about 4
am in extreme back (flank) and side pain under the ribs. It was
excruciating. I went to the Dr. and had bloodwork and MRI and CT
scan. Nothing showed. I was frustrated. Finally Dr. said it must be
fibromyalgia. I tried meds for that and got no relief. I went to OB
and convinced him to do hysterectomy. Had that in 2007. Recovery was
long as they had to cut me open to perform. I got to keep one ovary
but the other was covered in cysts. My organs were completely
adheased together and it took 2 hours to cut through scar tissue to
get to the uterus. I as so hopeful this was the reason behind all my
symptoms. I was glad I wasn't bleeding 17 days a month anymore but
the upper pain continued. I went back to Dr. and more tests were run.
Everything always came back normal except for elevation in
neutrophils and elevated c-reactive protein. CT with iodine and
contrast showed cyst on remaining ovary, but I know the pain isnt
from there. I had hida scan and gallbladder ejected normally although
I had painful symptoms after injection of CCK. I went to ER last week
in pain again and elevated BP. They sent me home. Then called two
days later and said I have UTI and to come back and get antibiotic. I
took labs from when I was there in May and nurse looked and said "Oh
my gosh You had UTI in May too and no one told you" Ive been on
Keflex for 5 days now and still no relief. It doesnt hurt to pee it
hurts up where my kidneys are. Pain is constant but gets very intense
at times and I can do nothing but stay in bed all day with a heating
pad. I wake up and it feels like a cat clawed me up inside overnight.
I pee alot but it never hurts. Also I was hospitalized in 2006 for
aseptic (viral)meningitis. not sure if that is important or not. I am
very tired all the time, have wierd muscle spasms, chronic diahhrea,
fatty floaty stools, headaches, chest pain, increased BP,
palpitations, weakness and numbness, bone pain. My chief complaint is
the chronic flank pain in my back. On a pain scale it is 5-10 as it
varies in intensity but is constant.
Here's labs from recent visit:
WBC 14.4 (3.5-10.0)
Neutrophils 84.1 (40-77)
Lymphocytes 11.1 (15-47)
bun 10
creatinine 0.9
b:c ratio 11.1

Urine
Leuk esterase trace
wbc 0-5
rbc 0-3
epithelial cells 4-9
bacteria many

urine culture
colony count >100,000
escherichia coli
I have looked at things like pancreatitis, celiac, IgA nephropathy,
and loin pain hematuria syndrome. Any help would be greatly
appreciated

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Hi

So sorry to hear that you are still having trouble getting doctors to acknowledge you have a real disease.  It took my daughter 3 years, but now she is doing better.  Her pain management doctor is great. After she was diagnosed he researched the disease and started her on some new medications.  She takes lyrica ( often used for seizures) and she was on a patch called fentynal She was doing great on that but developed and allergy to the adhesive so now she is on Oxycontin 2 times a day and percocet when needed if the pain gets real bad.  She still has pain every day but it is tolerable.  I hope you find a doctor that is a little more caring and is willing to do some research. Just don't give up.  My daughter has been called crazy, drug addict and  just looking for attention.  If the doctor didn't believe us we just moved on to another doctor.  She was finally diagnosed at Cooper Medical center in New Jersey.

                                       Good Luck

                                      Betsy

Hi everyone,

I have been dealing (struggling) with this condition for over 5 years
now but only got a diagnosis last year. I am 21 and live in Scotland,
UK. My urologist performed a renal denervation last January but it was
unsuccessful. He then sent me to the pain management clinic who
proceeded to tell me that it was all in my head and discharged me
without further treatment.

I am looking to be re-referred to my origional Dr and want to have
some suggestions ready for treatments. I have been researching medical
journals but would like to hear from anyone who has experience of a
treatment that works.

Any help would be greatly appreciated.

Fiona

Hi

No we haven't tried the nuvaring yet.  Her doctor gets nervous about some new medicines because she is allergic to so many.  Its really weird, she never had any food or drug allergies before, but now she is so sensitive.  When she first started getting the constant pain, she had about 40 kidney stones.  She was in and out of the hospitals for 2 1/2 years.  She became allergic to adhesives, morphine, torodol, mobic, fentynal, shell fish, x-ray dye and some other things.  She was going to try the shot but, if she is allergic to that she will have it in her system for three months so we decided against that and as for the nuvaring, we are considering that, but her doctor warned her that if she is allergic to that she will have some extremely uncomfortable symptoms and she is afraid of that. 

She has been dating a nice boy for 21/2 years now, He was kind of afraid of her in the beginning. but now he takes care of her just as good as I do.  They swear they are going to get married.  She graduates this month from high school.  6 months ahead of her class.  She wants to get married have a couple of babies and then have a hysterectomy.  I told her it may not work out that way but I don't want to crush her dreams. 

Any way thank you for the suggestion. We go back to the doctor on Tuesday and that is one of the things we will be deciding.  I never knew anyone that used it so I will share this info with her.

Have a good day

              Betsy

_____________________________________________________________
Stop losing your hair. Click to restore your hair.

Hi

No we haven't tried the nuvaring yet.  Her doctor gets nervous about some new medicines because she is allergic to so many.  Its really weird, she never had any food or drug allergies before, but now she is so sensitive.  When she first started getting the constant pain, she had about 40 kidney stones.  She was in and out of the hospitals for 2 1/2 years.  She became allergic to adhesives, morphine, torodol, mobic, fentynal, shell fish, x-ray dye and some other things.  She was going to try the shot but, if she is allergic to that she will have it in her system for three months so we decided against that and as for the nuvaring, we are considering that, but her doctor warned her that if she is allergic to that she will have some extremely uncomfortable symptoms and she is afraid of that. 

She has been dating a nice boy for 21/2 years now, He was kind of afraid of her in the beginning. but now he takes care of her just as good as I do.  They swear they are going to get married.  She graduates this month from high school.  6 months ahead of her class.  She wants to get married have a couple of babies and then have a hysterectomy.  I told her it may not work out that way but I don't want to crush her dreams. 

Any way thank you for the suggestion. We go back to the doctor on Tuesday and that is one of the things we will be deciding.  I never knew anyone that used it so I will share this info with her.

Have a good day

              Betsy

Hi Pogz,

I was reading your post about your daughter's troubles with birth
control. I know we've talked briefly about this before, but has she
tried the Nuvaring?  I also get ovarian cysts the minute I stop birth
control. I started seeing a new gyno after trying so many versions of
the pill. I was having so many horrible symptoms (migraines included),
and she put me on the Nuvaring. It has worked well without any of the
side effects I had on the pill. I can't say if it makes my LPHS
worse.  I have had pain for so long and we are just now discovering
that LPHS is the source of the pain. Anyway, if she hasn't tried
it...it's worth a shot. I know how miserable cysts can be, and I
haven't had any since the Nuvaring...

Best Wishes!
Danielle

Hi

Sorry I took so long to answer.  My daughter started with the LPHS symptoms before she went on the Pill.  She was put on the patch to control ovarian cysts.  She later found out that she was allergic to the adhesive on the patch so they put her on the pill.  Last summer she started to get migraines from the pill so she was taken off that.  She still suffers every day with the Loin Pain, But now she also has the cysts returning every month.  I have heard a lot about the pill and LPHS but I didn't see ant difference with her when she was on the pill other than not having  cysts.  She does have a great primary doctor that has read up on LPHS and is always willing to try new treatments for her.  She never makes her feel like she is lying or making up the pain.  I have heard from other people that their doctors don't believe that they are in that much pain.  Good luck I hope you feel better soon. If your doctor isn't helping then go to another one.  We have been to about 25 doctors before she was diagnosed.  We finally got Dr Weisberg from NJ (where we live) to see her.  he only cares for adults and she was 16 at the time.  Her primary doctor and her kidney doctor hounded Weisberg for about 6 months before he finally agreed to see her.  We have learned to never give up.  Now that she has a diagnosis she is on the right pain meds and is living a more normal life.  She is graduating high school this month (6 months ahead of her class). She is driving and working and do more than she was able to for about 2 1/2 years.  She has not had to have any operations since being diagnosed either.  Her kidney biopsy (Which was needed to diagnose her) was her last one.  Before that she had eleven different surgeries  mostly exploratory types to try to find out what was causing her pain.  Sorry I am going on so much, but this his a horrible disease and more doctors need to be made aware of so people can live a better quality of life.