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~ LPHS ~

Hi , I dont know if this is posted properly but we will see . My name is Erin Walter. Im 19 and from New Zealand. I have suffered with LPHS for five years now .

I have seen numerous Urologists , Renal Physicans , Pain Specialists . Iv tried many pain reliefs . Im in pain 24/7 . Every urine test for the past six years has had blood in it , microscopic or visable . I have bad bouts , or ‘attacks’ as i call them , not so often anymore . every two months or so , it was weekly at one stage and i spend weeks in and out of hospital on I.V morphine . I have had a stent put in , a camrea put into my kidney my urologist saw my kidney was bleeding inside . He said he would try to laser it , but it was bleeding from so many different spots that if he tried he would just damage the kidney . My kidney function is fine , and other than low iron levels occasionally im pretty healthy .

LPHS has had a massive impact on my life . I left school at 15 , to study from home . I lost the majority of my friends , if it wasn’t for my boyfriend and family i would have been miserable . My Mum has been there for me , takes me to all my doctors visits . She brought a house just over a year ago with a flat underneath it for my boyfriend – Devin & I to live it . Its great to have our own space , but the comfort of having Mum upstairs if I need her . Iv been with Devin for five years in July , friends say we are like an old married couple and im happy with that . Hes my strength when i have none , hes my best friend and such a blessing to have . It hasn’t been easy for him either , its not nice having a girlfriend who is in and out of hospital , drugged up & always in pain .

Another love of my life is my puppy . his name is Bailey and hes a chihuahua pappilon cross . hes a little over a year old . he sleeps in bed with me , keeps me company when im up late at night.

I’m at a loss as what to do . I’m tired of this, I spend most of the time at home . I dont work and rarely see my friends. As awful as it sounds I do find some comfort in emailing people who know what its like . If you would like to email me its , erinrose@windowslive.com .

Hope you are all having a painfree day / night .

Love Erin

LPHS…. my story from London

Hi,

I am in London, England and this has hit me too. On June 6th last year I had an episode of frank haematuria and went to hospital, they suspected a stone but after many tests and a ureteroscopy, I was diagnosed with LPHS and sent home with painkillers…practically written off.

Not happy with this I complained to my doctor who referred me to another specialist at a well known hospital in London. He said he needed to do another ureteroscopy and i had that done last month, again i have now been almost written off. I am under the care of a pain team at the hospital who want to fit me with an implant which will mean i can zap myself when bad. The tablets they gave me are pregabalin, diclofenac and a regular analgesic. Diclofenac is related to aspirin and gives me terrible acidity and I am allergic to gaviscon and alike antacid meds. Pregabalin wipes me out and I just sleep all day.
I can no longer work and the tablets only dull the pain slightly.

Our national health service means that as soon as they realise they cannot fix me, i am sent home with pills and forgotten about.Please wish that the USA does not end up with the health service it is currently pushing for as then you will all be in the same boat as me and my mother who was not allowed MS treatment because it was too expensive for the over 5o’s.

I am 39 and a full time carer for my father which is becoming an untenable situation. I also have a twelve year old daughter and pray she does not get this too. Some stories on here show a hereditary link.

I feel that because there are so few of us around the World, the money needed for research will never be forthcoming and that means we are all left in limbo and in terrible pain.

It is a solitary illness because when its really bad and you are doubled up , nothing anyone does can help so you tend to retreat into your own space to deal with it…like a wounded animal.

I wish all sufferers as much pain free time as possible…..above everything, the pain gives us wrinkles!!

Annie (ithinkitsabargain@gmail.com)

LPHS….What now?

After reading many of the stories on this site, I have come to realize the one thing everyone has in common is the fact that they are alone in how they feel. I have been recently diagnosed with LPHS, my 16 year old daughter is in testing for conformation of this condition also. I relate to her feelings, and though it may seem a blessing to have someone around who understand, it is really a curse to see my daughter falling to the same fate as I. She is just getting started in life, and has so much ahead of her. Treatment options are also different for a child. Narcotic pain meds may work, but further damage the body, and may become addicting. Also not prescribed to a minor child here. Marijuana is an option, but not at 16. How is she to live with this? What can I do for her? Anyone have suggestions?

I can be reached at ivyg09@yahoo.com

My Story

My name is Ivy Goss. I am a 37 year old mother of 4.Recently I was diagnosed with a disease that is very uncommon; Loin pain-hematuria syndrome. Not much is known about this condition. There are no known cures. Once known as idiopathic hematuria, LPHS simply means you have blood in your urine, and pain in the kidneys and, or lower back, with no known explanation.

My mother and sister have the same symptoms, yet no diagnosis for the condition. They live in Pennsylvania. I live in Washington State.

Pain pills may be given to help make you more comfortable. In my opinion, this seems a lot like playing bare foot in a snowstorm when you have a common cold. Every pain pill offered to me has had an adverse effect on the kidneys or liver. Some of these pills have an addicting factor.

There have been days recently that my pain is at a disabling level. If not for the patience of both my employer, and fellow co-workers, unemployment would be likely.

My 16 year old daughter exhibits the same symptoms, blood with no infection; being the first sign that she may also have this disease. I am on a personal mission to discover what triggers this disease, and how to control the symptoms in a way that is not harmful to the future health of me and my daughter.

Meeting with a fitness trainer is at the top of my list. Diet and exercise will be the first avenue we explore.

Painful life

I was diagnosed with LPHS at the age of 16, I am now 18. Luckily I didn’t have to go through a lot of doctors, my mom also has LPHS. She knew exactly what needed to be done. LPHS has changed my life so much. I can’t do the things normal teenagers do. Because of my age my doctor won’t give me any pain meds that work, just tylonol 3.

Besides my mom, I don’t know anyone who has this. When I found this site today it made me feel less alone. Less of a freak.

Answers to my questions…do you have any?

About six weeks ago, I found this wonderful site, it was and is still so very helpful to me. I’ve read so many of your story’s, if not all, of what you have said about LPHS. I was diagnosed almost 2 months ago. I’m 58, but now have realized that I have had this disease for many many years. I can’t count how many doctors have told me “there’s nothing I can do for you.” Or MY ABSOLUTE FAVORITE “Maybe you should seek some phychiatric help.” Knowing now that I actually have something wrong with me is a relief, but for it to be a rare kidney disease, only confuses me more.

For the past 5 years, I have had the most wonderful Doctor, Dr. Abhin Singla. He has helped me go through so many things. My diagnosis list is 3 pages long, single spaced and over a period of 25 years. You see, I had breast implants in 1979 and they ruptured, they removed them in 1992, apparently they had been ruptured for approximately 3 years before the doctors found out. The silicone had already leaked into my body. The only things left were the silicone capsules. Some of you might be asking, “Why did I do this?” It wasn’t for vanity, I had double d’s of my own. I was 110# and already had 5 surgerys on my breasts due to fibercystic disease and tumors. The doctor suggested I have a complete masectomy and put these little “b”cup capsules in. My X husband insisted we do that, he said no 27 yr old woman should go with out breasts. I was such a fool, I was so afraid, he’d leave me if I didn’t do it. So, I did. By the way, he did leave me, 3 years later. But, I blame myself, for the final decision. I didn’t have the courage to say no. Now, I’m paying the price, with my poor health for that foolish decision. Since 1990, I started getting sick, I broke my foot, it took almost a year for me to be able to walk again, I kept getting infections, then my gall bladder caused enough problems to be removed…. I wont go into my medical history, we’d be here forever. After all the years of seeing SO MANY Doctors and none of them really wanted to treat me. I was a liability. I was told by medicaid to go to the emergency rooms if I got sick, so I did. They thought I wanted the drugs. I wanted a doctor who help me. I have lupus and my immune system sucks. I get sick easy. I have to stay away from people who are sick. I used to have headaches so severe on a daily basis for over 10 years. I became addicted to one specific medication. I found this absolutely wonderful man who said he would help me get off of it, Dr. Abhin Singla. He is not only my doctor, but my friend. He got me off the meds and has helped me with getting my life back to some kind of normalcy, if thats possible. I was in a wheelchair/walker and crutches for over a period of 6 years, due to arthritis. There came a point when I just couldn’t walk anymore. He wanted me to get my knees replaced. The doctor he suggested said no at first. But my Dr Singla, kept saying, she can do it, she’ll work hard. So we did both knees at the same time. Today, I’m walking on my own, without assistance. That was 3 years ago. Since then, I’ve had other health issues, but he’s always pulled me through. I went to him 22 months ago with what I thought was passing a stone. I’ve passed many over a 30 year period. He sent me to see a urologist. None of them in that group could do anything for me, I was passed around within their group for over 6 months, the pain in my right kidney, upper ureter and lower ureter was excruciating. Finally I was told, there was nothing more they could do for me. So I went to a Nephrologist, she referred me back to the urologist’s. I thought I would try a different urologist in the Chicago area, after telling “Doc” what she wanted me to do, he said “NO WAY.” We did all kinds of tests again, he never gave up on me. Then he found a new urologist for me to see. After more tests and trying different things, the doctor felt that maybe we should take the kidney out. He did some research on the symptoms and thought this could be the answer. The day before the surgery was scheduled, Dr. Singla pulled the plug, NO SURGERY. He wanted to do some more testings. So between the urologist, Dr Cho and Dr. Singla, they decided to do a biopsy. By this time the left kidney had started to have the same kind of pain. Dr. Cho was up many nights and finally found out what I had, everything pointed to LPHS and Arteriolonephrosiclerosis. Neither of these two wonderful doctors have given up on me, we are trying to find some answers. Something to help me, to take away the pain. When I see something on this site, I tell them, this is what they’ve tried. So we try it. This disease is new to them.

I can’t tell you how many times I’ve cried myself to sleep because of the pain. Times when I just want to die and quit, but I’m no quitter. I’ve come this far. We’ve tried meds, nerve blocks, injections of “cocktails”, so many things, If it wasn’t for Dr Cho’s diagnosis and Dr. Singla helping me with the pain. I’m not just referring to pain meds, but to search for other ways to treat this disease, I don’t know where I would be. I remember an emergency room doctor accusing me of being drug addict, I insisted that he call Dr. Singla personally, he was my primary care physician. He didn’t know or want to know anything about LPHS, but he made the call anyway. When he returned to my cubicle, he told me I was to be admitted to the hospital and that he owed me an appology. Doc Singla and I have been going through all of the support groups to see what others have tried, what worked or did not work for others. So PLEASE, tell us what you’ve all tried. I’ve read a lot of things in some of these letters about bad doctors, but as we all know, there are some really good ones out there too.

I don’t get too many good days. As I am having severe trouble with urinating now. My right kidney is twice the size it should be. I’ve asked both Docs about doing an exploratory, to see if adhesions are causing some of the problems. Have any of you had problems with adhesions and one more question… have any of you had any type of silicone implant (breasts, hips, knees,?)

Thank you for hearing me out, but its been a long struggle and I am so tired, like all of you. But I have to say this.. if you haven’t found a doctor that believes in you, as I have, keep looking. Without Dr. Singla, I don’t know what shape I would be in, he’s a doctor who really cares.

23 years old and uncurable

hi i’ve been on this website for around 3 years and i have made some great friends who understand what i’m going throught. i have had LPHS for 6 years now and am still uncurable. if anyone wants to ask any questions feel free to email me. its totaly_tweety@hotmail.com. . i also want to tell people about a fanatastic doctor who is helping my surgeons even tho he lives in ohio and i’m in scotland. his name is dr herbert and he is at ohio uni in research. if your doctors are sturggling to help as there is very little info on LPHS he will send a wealth of info that has helped me i’m still in pain but At least it helps a bit much better than having opium based drugs which slowly kill you i’m still on them but at a lower dose with some new tablets and also a THC (the active ingredient in cannabis) nasalspray!

i just want to say i have made some fantastic friends here.
again feel free to contact me

Kirsteen