I've been unwell for years can anyone help..

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I've been unwell for years can anyone help..

Postby Nigeboyo » Sun Mar 27, 2016 10:46 pm

Hi, I became really unwell around 2009 and having been to the doctors many times but I still don't know what is wrong with me.

The reason I've posted here is because recently I've been getting pain in my kidneys. I've had this on and off for many years and have been diagnosed with urinary tract infection a few times. But the last time I was given antibiotics they made me really I'll and my kidneys were even worse.

Instead of going to the doctor's for UTI tests if I have pain, I've found that by eating certain diet it will clear up.

But as the years having gone by more and more foods have been making me I'll. Now I find that meats and cheese I can't handle, potatoes I can't eat, root veg not so good. But the most recent I have found is salt. I've been on a very restrictive diet of mainly pasta some salmon paste, butter and Apple's.

To drink I have mineral water and spring water.

I've noticed the salt really badly because recently I eat some salty foods and my kidneys were aching afterwards. Also I put on weight and my face went puffy, ankles swell a bit.

Another symptom I have is any type of pollution, exhaust fumes, perfume, bleach, anything strong smelling makes me unwell.

I have many symptoms one is a really bad back, hip, neck pains and stiffness. If I eat the wrong foods I get a bad back.

Also I get severe headaches and can't stop vomiting, loads of bile. I can be really I'll for a day our 2 and up to a week. Just laying in bed and can only drink water. I can lose 10lb in weight.

Can anyone help and let me know if it probably is my kidneys that are a problem (which I am now thinking) and how can I explain clearly to my doctors. I'm so fed up of going there because I find it hard to explain myself properly when I'm there and with a big list of symptoms it is confusing.
Nigeboyo
 
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Re: I've been unwell for years can anyone help..

Postby rheaybou » Mon Mar 28, 2016 8:04 am

Did your Dr do a blood test?

Because that would show if you had reduced kidney function, unless you get tested then you will never know from symptoms
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
34 year old with Alports.

Living donor transplant take two 18/02/2013.....
rheaybou
 
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Re: I've been unwell for years can anyone help..

Postby Nigeboyo » Mon Mar 28, 2016 9:36 am

The doctor has given me many blood tests over the years, i presume kidney function was one if them. i've become fed up of going to the doctors and getting so many blood tests, been there so many times.

I have Gilberts syndrome which is a genetic liver condition and have High levels of bilirubin ( my skin can go jaundice). My bilirubin count has been very high in the 50's.

The doctor seems mostly concerned about my liver for blood tests.

I have read that blood tests for reduced kidney function are often inaccurate until the kidney disease worsens.

The advice I'm looking for is what should I be asking my doctor for him to give me better tests. What tests should I be asking for rather than just blood tests?.
Nigeboyo
 
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Re: I've been unwell for years can anyone help..

Postby Nigeboyo » Mon Mar 28, 2016 9:43 am

Also lately I've been getting numbness in both my hands especially my left hand. Slight numbness starts from my elbows down but the hands seem worse, like they are cramping up.

And if I eat potatoes or root veg I can get really itchy skin, and rashes.. I've just got too many symptoms, thats the confusing problem.

Another is chest pain, esp if I've been laying down too long...
Nigeboyo
 
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Re: I've been unwell for years can anyone help..

Postby AmandaClare » Mon Mar 28, 2016 1:59 pm

Have you looked into migraine? It can have many of the effects you mention, including fluid retention. You can have migraine both with and without the headache and in some people it's pretty much a chronic state. It would also explain why the doctors can't find anything - migraine is notorious for making you feel profoundly unwell when there are few clinical signs.

Best of luck with getting some quality of life back.
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
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Re: I've been unwell for years can anyone help..

Postby rheaybou » Tue Mar 29, 2016 8:48 am

Everything you have listed as a symptom is just that, a regular blood test will tell your Dr if you have reduced kidney function. Lots of people have them here and they are the best method to tell if something is wrong with your kidneys.

You could buy some urine sticks and check for blood/protien in your pee, but really you should trust your Dr and ask him to check again. Nobody here is a Dr.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
34 year old with Alports.

Living donor transplant take two 18/02/2013.....
rheaybou
 
Posts: 1360
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: I've been unwell for years can anyone help..

Postby wagolynn » Tue Mar 29, 2016 8:08 pm

Hi Nigeboyo,
I am sorry to read of your troubles.

Most of your symptoms are compatible with Liver, and/or Kidney, malfunction.

You are best sticking with one Doctor to get this sorted out. You and your Doctor must work together to reach a good diagnosis, which demands a lot of patience from you both. On your part, not making any dietary or lifestyle changes without disusing them with your doctor first, otherwise he/she will be chasing a moving target.

As to the various foods you say you cannot eat, you must bare in mind that our brains are very powerful and quite capable of presenting very real pain or other symptoms if we let it wander in that direction.

E.G. I eat a piece of cheese, following this I get a headache, this is a random headache, we all get them, I now make my mind up that the cheese caused the headache, from then on my brain will oblige me by telling me I have a headache the next time I eat cheese.

It is not quite as simple as I have described but it makes the point.

There are tests which your doctor can authorise that should sort out the real allergies from the imposters.

That is not to say you will not have foods that will, for the moment, upset you but I think these will chiefly be connected with your liver problems.

What worries me, is on the path you appear to be on you will end up not being able to eat anything.

This would be very bad....

Best wishes.
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Re: I've been unwell for years can anyone help..

Postby bratt » Thu Apr 14, 2016 9:48 am

Nigeboyo, one thing you can do is to actually prepare (write down) your entire medical history, which will include all of your symptoms, test results, and treatment effects.

1. What is your single main current symptom?
2. Other current symptoms?
3. The time course of your problems from beginning to now. Include all official diagnoses or positive results you have had so far.
4. Family history - main health problems of your close relatives.

So, you tell a doctor what you know about your problems. It's then a doctor's job to do what tests and treatments to try. If you do not trust the doctor from any reason, find another one.

It is possible you have few separate conditions that may or may not be related.
1. Itching after eating certain foods speaks for allergy to those foods. It is an allergologist who should know what tests to run.
2. Cheese and meat are high in protein. Problems after eating protein foods may suggest a kidney disease - not an infection, but kidney failure of sort. Swelling (facial puffiness) after consuming salt again suggests a kidney disease.
3. Neck, back and hip pain and stiffness suggest a rheumatological or autoimmune disease, such as rheumatoid arthritis or SLE. These diseases often affect kidneys.
4. Here you can check symptoms of various kidney diseases .

I can't give direct advice, but please discuss with a doctor about referring you to a rheumatologist, allergologist or nephrologist. But again, first, compile an exact factual list of your symptoms in a time manner.
bratt
 
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