How can I get in contact with a specialist who is able to listen and understand my problem?

[matget]

Hello,

I've been living in France for the last 23 years. Up until marche 2010 I had a very active working life.

Unbearable left kidney pain put a stop to my work and my life. Although I have many urine and blood tests that show problems I juste cannot find a Dr that will accept that I have a problem that needs to be found.

I have ; Bood,protien,sodium urate crystals and calcium phosphate crystals in my urine,all of which can be seen with a naked eye when in a crisis. The level of "coproporpherine I " was found to be 250% the max. "Coproporpherine III " was normal.

; Vitamine 25OHD 7.0 ng/ml

; "Leucocytes et Neuttrophiles" are very often very high (I was told in one case it is

probably a mistake at the laboratory)

; "MYPGOBINEMIE" 6.0 ug/l

; HTA when in crisis 240 / 160 and when not 115 / 80 - 125 / 85

; " C R P " often high up to 400% max

; cholesterol variable from normal high to very high

; "Carboxy HB 5.5 %"

It is very difficult for me to understand exactly the meaning of these tests and if anyone can be of any help it would be very much apprieciated. The Dr's at present contradict themselves and each other trying to fob me of with any excuse to try and convince me that everything is ok and that there is no reason that I should be in pain.

I am at present taking "oxycontin LP" 20 mg morning and evening (LP means slow release) and "oxynorm" 10 mg every 4 hours when in a crisis. When the pain is still unbearable,which is very rare,I go to hospital and I am given intrevienus pain killers until calmed and then I am told to go home and speak to my GP,whom has sent me to many specialists who send me back to her saying "there is nothing wrong with you sir, goodbye".

I know that I am not the only person who is,or has gone through hell to finally be diagnosed with something. If anyone has had very similar symptoms or can make sense out of all this,please do contact me.

I want to be able to fight but I need to know what I'm fighting against.

Thanks in advance.

[cmcginily]

Hello Matget.

I am so sorry to hear your problems, Have you had ultrasound scans or MRI scans of the kidneys along with the blood tests? Have you seen a renal consultant and or gastro enterologist or liver specialist? If not you need to request that your GP does this for you.

The results you show, neutraphyls and leucocytes are a sign of urinary tract infection, if this has travelled higher into the kidney it causes severe pain and high temperatures. Do you have bladder stones or renal stones this would give the "crisis" type pain until they pass. The raised CRP shows you have infection somewhere. Coproporpherine is linked to many conditions and needs further investigation when raised . I am not sure what the rest of the results mean but I would certainly go back to your GP and insist on a scan and referral to a renal and or liver specialist.

Best wishes Christine

[matget in reply to cmcginily]

Thanks for answering,

Yes I have had scans,lots. I cannot be 100% sure of the english names.

Ultrasound,MRI,angioscanner,intravenous urography,scintigraphy rénale,mictional cystography,urethroscopy,bone scan and coloscopy.

It has taken more than 3 years to have all these tests done.Each and every test has been asked for by different doctors. The only doctor who acceptes that I have a problem and sent me to another specialist was the nephrologist who witnessed a crisis in his office. All the other dr's ell me "you don't have anything wrong sir,goodbye". The nephrologist was at the end of his carreer and has since retired. I had a "kidney function test" instead of explaining what was wrong with my urine the dr decided that I didn't know how long 24 hrs are and that i had weed too much in the pot. I have been to hospital in emergency a least a dozen times and every time I was told that I had a kidney stone because of the condition of my urine and the exctent of the pain My urine has been tested about 30/40 times in 3 years for infection and ALLWAYS negative. The crystals that are very frequant have been tested 5 times but the kidney specialist will not accept the results because he feels that the tests were not done correctly. The protein in my blood was discovered very lately because it was my sister a head sister in England who told me to look for them and not a dr here in France. The morphine that I have been given to take when in a crisis I avoid taking as much as possible. Even though one months supply lasts more than four months because I prefere laying in bed for 4/5 days than taking the drugs and increasing my problem. I still have to put up with dr's and nurses treating me as though i'm a drug addict.

I think that everything that you have suggested has been done other than liver specialist.

I have a job to believe that my liver could be responsable for all this and I will most definately look into it. I have to be very carefull as to what I say to my GP. My GP died of cancer just before my problem started. My new GP has up to now done everything that i ask but I am worried that she will think that i'm a hypercondriact if I start suggesting problems elsewhere.

[defier]

Hi Matget, so sorry to hear of all your troubles. Since being diagnosed with polycystic kidney disease in January I have discovered that GPs seem to know very little about it! As has already been recommended, an ultrasound or CT scan would seem necessary. It does sound as though you have recurring urine infections so I would have thought you need to see a urologist, and maybe a nephrologist. I'm not clear whether you are still resident in France? Obviously I don't know anything about the french system, but the UK NHS let me down rather and I decided to consult a nephrologist privately. It cost £250 but was worth every penny to be able to spend an hour with a specialist who knew what he was talking about. If a a private consultation isn't an option for you try writing down all your questions and tick them off as the Dr gives you the answers. I hope you get the answers you need.