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This Forum is for patients who suffer from Loin Pain Haematuria Syndrome, their supporters and friends. We also include those who also have IGA and IGM as they are closely connected.
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Title: Help - More Information Required About LPHS
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RosalieD
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Registered: 02/06/2007
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(Date Posted:03/06/2007 23:34:33)

Date Posted:06/04/2007 9:27 PMHi everyoneThis is my current position medically and any information anyone can give will be greatly appreciatedI had a kidney biopsy in 1997 and was diagnosed with Thin Basement Membrane Disease and told very little except that I would lose minute amounts of blood and protein, but that this was of no consequence, just to get my kidney function checked each year by my GP.Over the years, I have had numerous infections and have fainted with pain sometimes due to blood loss/protein loss. My GP actually prescribed dipsticks for me to check on the protein loss as he told me that when I was sick with something else, this would exacerbate my kidneys and the blood loss/protein loss would increase, but so long as it went down, that was fine.Hospitals/GP's seem to know nothing about this disease and are quite alarmed that I even have these dipsticks at my disposal which stops me hassling them at times.Anyway, more recently over the last 6 months or more, I have noticed a pattern which I have referred to my GP. This is guaranteed on between days 7 to 11 of my cycle, I start to feel really nauseous and breathless and have pain over my left kidney. I could sleep for England at this point if I didn't have to get up for work and try to ignore it. I have a week of feeling okay with normal sleepi and a week where I can't sleep for love nor money. My period then starts and the pain returns over my left kidney.My GP has referred me for another scan and blood tests as he is not happy with what's happening, but in the meantime I asked for copies of my hospital notes from varous hospitals over the years. I have just found reference in them at the weekend to loin pain haematuria syndrome which it states I am suffering from in 1999, but which they have never told me despite seeing numerous consultants.Does this sound like the case to any of you? If it is this syndrome that is causing all the nausea and nothing more sinister, then fine, I can live with that, but any advice would be appreciatedRosaliexxx

--------------------------------------------------------------
Rosalie Dean

Alison Banister
1# 



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Score:68
Posts:68
Registered:04/10/2004
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(Date Posted:12/06/2007 17:28:46)

Reply to : RosalieD
Date Posted:06/04/2007 9:27 PM

Dear RosalieD,

Sorry no-one has replied to you sooner & sorry to hear you too are suffering.  It must have been a shock to find out that you had LPHS years after it had been suspected.

My experience of kidney pain is that it does get worse around menstruation.  I am told that many pains worsen around that time.  I forget the reason but it's probably due to the hormone change.

With LPHS the main aim is to gain some kind of pain relief & for this a good pain specialist is required. I don't know what country you are in but in England the GP can refer you to a pain specialist.  Most health professionals that I have met become baffled if a kidney stone is not the cause of the pain & many people are told that if there are no stones then the pain must be invented.  We need to help them to understand about LPHS.  I believe that your condition is listed under the heading of LPHS on the National Kidney Foundation website.

Hopefully there is enough info on this site to help you but please email me at alison.banister@ntlworld.com if you want to ask me anything specific

Best wishes from

Alison

PS you will find other LPHS sufferers on the www.healingwell.com website under chronic pain.

--------------------------------------------------------------
Alison

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RosalieD
2# 



Rank:none
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Posts:4
Registered:02/06/2007
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RE:Help - More Information Required About LPHS
(Date Posted:26/07/2009 11:11:17)

Thanks Alison - apologies for the delay in responding some two years later, but have had ongoing problems with kidneys since resulting in two hospital admissions - one November 2008 and the other 9 days of hell this July 2009.

I was under Urology who done a CT scan which they told me revealed lower back damage and have referred me to an orthopaedic clinic for this. I had a cystocopy done on 5th June of my bladder which revealed nothing obvious and am due to see the urologist to discuss this result on 10th August. As far as I am concerned, the diagnosis of Thin Basement which was diagnosed after the biopsy in 1997 is not the only kidney disease I am suffering from - remember they told me it was "of no consequence" and only "trace" amounts of blood and protein would be used.

I have just had a very bad time - sudden dizzyness which turned out to be Vertigo - misdiagnosed by two Doctors which one thought was caused by my kidneys.

Whilst in hospital, I was under urology, orthopaedics and gynaecology and was suffering vertigo all the time without it being diagnosed until I saw another GP last week who asked a simple question and knew it was vertigo and hopefully that is going away - the CT scan showed a cyst on the ovary I have left which is on the right side and they are reluctant to remove it as I would go into menopause about 20 years too early. I did initially want it removed, but now just want it looked at via keyhole as ironically enough the pain on my kidney is always on the left side and that is the side where the adhesions from previous surgery are.

Sorry to ramble on to you all, but the new symptom which I have not experienced before, but which kicked in and terrified me in hospital this last 9 days is that my left leg is numb and I cannot feel it anymore. I also had tremors and stabbing pains in my biceps/triceps and like a shock wave going through my leg/abdomen. The gynaecologist thinks this is due to the kidneys electrical circuits/nerve damage, but that urology really need to get their act together and sort this out once and for all. I told my GP that I think it is Nephrotic Syndrome or Glomelurnephritis and that I want urology to discuss with nephorology and get this sorted as it is not down to Thin Basement or LPHS.

Please let me have your thoughts on this last paragraph particularly the shockwave/nerve damage bit and the electrical circuits of the kidney as I just hope it is and all this pain can then be alleviated by diet/exercise/whatever and no more A & E admissions

Best wishes to you all and keep fighting the staff who seem to think it's all in our heads

Rosalie
xxx

--------------------------------------------------------------
Rosalie Dean

Poppy2
3# 



From: Canada
Registered:21/11/2009
Time spent: 0 hours

Reply To RosalieD
(Date Posted:21/11/2009 23:56:10)

Reply to RosalieD (26/07/2009 11:11:17)

Thanks Alison - apologies for the delay in responding some two years later, but have had ongoing problems with kidneys since resulting in two hospital admissions - one November 2008 and the other 9 days of hell this July 2009.

I was under Urology who done a CT scan which they told me revealed lower back damage and have referred me to an orthopaedic clinic for this. I had a cystocopy done on 5th June of my bladder which revealed nothing obvious and am due to see the urologist to discuss this result on 10th August. As far as I am concerned, the diagnosis of Thin Basement which was diagnosed after the biopsy in 1997 is not the only kidney disease I am suffering from - remember they told me it was "of no consequence" and only "trace" amounts of blood and protein would be used.

I have just had a very bad time - sudden dizzyness which turned out to be Vertigo - misdiagnosed by two Doctors which one thought was caused by my kidneys.

Whilst in hospital, I was under urology, orthopaedics and gynaecology and was suffering vertigo all the time without it being diagnosed until I saw another GP last week who asked a simple question and knew it was vertigo and hopefully that is going away - the CT scan showed a cyst on the ovary I have left which is on the right side and they are reluctant to remove it as I would go into menopause about 20 years too early. I did initially want it removed, but now just want it looked at via keyhole as ironically enough the pain on my kidney is always on the left side and that is the side where the adhesions from previous surgery are.

Sorry to ramble on to you all, but the new symptom which I have not experienced before, but which kicked in and terrified me in hospital this last 9 days is that my left leg is numb and I cannot feel it anymore. I also had tremors and stabbing pains in my biceps/triceps and like a shock wave going through my leg/abdomen. The gynaecologist thinks this is due to the kidneys electrical circuits/nerve damage, but that urology really need to get their act together and sort this out once and for all. I told my GP that I think it is Nephrotic Syndrome or Glomelurnephritis and that I want urology to discuss with nephorology and get this sorted as it is not down to Thin Basement or LPHS.

Please let me have your thoughts on this last paragraph particularly the shockwave/nerve damage bit and the electrical circuits of the kidney as I just hope it is and all this pain can then be alleviated by diet/exercise/whatever and no more A & E admissions

Best wishes to you all and keep fighting the staff who seem to think it's all in our heads

Rosalie
xxx
Interestingly Rosalie - When I fell into my deep crisis with LPHS I had a benign tumour on my ovary that had to be removed by surgery.  I also have nerve pain.  It wraps from my spine, across my ribs to the front.  It is in my feet up to my knees.  It is also in my hands up to my elbows.  I am on the forum wondering if others have this.  I also have problems urinating & constipation.  Now you can blame the narcotics for constipation, but the inability to fully urinate?  If you look up neuropathy problems that are caused by diabetes the involuntary nerves that regulate these functions can be affected. So far none of my doctors have any explanations for my nerve pain.  The neurologist diagnosed carpal tunnel syndrome.  When I asked him how that accounted for the pain in my ribs, feet, and lower legs, he simply had a blank look on his face.

Poppy
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