[Patrickissickofit]

Hi all i'm hoping you all may beable to point me in the right direction as everyone things i'm a right old hypo thinking i'm always ill and making it up.

Let be begin,starting getting a wee infection first ,hurting when i weed so popped along to the docs he did a test on my wee and said my white cells were up take some amoxcillan ,this helped alittle then i started to get bad pains in back and kidney pains ,doc then sent me for ultra scan poss stones but none showed up ,the pain in kidneys carried on the a new pain arrived in my side and adomain area oh and the days of feeling tired all the time and now i seem to have a bit of white tongue and just feel stick and tired all the time.
I have been to the doctors three times with all these problems but dont know what steps to take next can anyone give me advice

P.S i also give blood on a regular basics but nothing has shown up on the tests they do

 

[Patrickissickofit]

:hehe:Whoops forgot to add loss alot of weight too also had a funny rash on bottom of cheek and neck lasted a few days sorry people i bet you get worries like me all the time sorry again !!!!

 

[Salopsally]

Hi Patrick,
Like the name lol.
Ooo dont worry about whinging. Its great to come here and whinge. Everyone knows how you feel. I think everyone of us has had that feeling that we are considered a hypochondriac because we get one thing after another and it cant always be pin pointed straight away as to whats causing it.
Sounds like you definately have something going on there so you have to keep up your strength to push them into finding out whats causing all your problems.
We all feel bad keep going to the doctors but in the end they will have to refer you on for further tests so keep going and bothering them if you dont think things are right.
Good luck to you.
Sal x

 

[Patrickissickofit]

Hi sal thanks for listening,its been about three months since this all started and gets worse when i stress about things but hey it now just seems to be there everyday well weird everyone around me is so peed about me moaning all the time .
Today has been a bad day again woke up with pains in side and back and had belts all day of feeling sick back and side pains have got worse while being on here ,just dont want to leave it too long and then cause some long term kidney damage,how do i know if it is causing my kidneys damage at the moment.
Im trying to drinking lots of fluid and flush my self out does this help and i dont want to keep taking pain killers every 4 hours as this can't be good for my body more advice greatly accepted :hehe:

 

[Clare.T]

Welcome to the site Patrick

I think you will have to pursue your GP on this one since we can't tell you not to worry when clearly something is wrong. Nor can we tell you what is wrong and reassure you.
Pain in the kidney region is most often due to infection or kidney stones.
Kidney disease( nephritis) is notorious for showing no pain symptoms but there would be other symptoms such as swellings especially in lower limbs, high blood pressure and maybe some visible urine abnormalities. Nephritis is detected in the first place by urine and blood tests.
You don't say how lupus comes into your health situation. As far as I know kidney disease in lupus is investigated and dealt with in much the same way as other sorts of kidney disease. Sitting worrying about it won't get you very far.
It often takes a lot of persistence and determination to get answers but don't be your own worst enemy. You know that you aren't making this up so don't let your doctor fob you off.


Good Luck

Clare

 

[Patrickissickofit]

WOW!!! what a great little web site thanks for the replys,ok i'll make a new doctors appointment and follow things up i have been under a real lot of stress lately but not sure this can cause all my little alments ,kidney pains and feeling sick,tired and weight loss but hey who knows lets hope its not to bad in the end many thanks again x

 

[KarolH]

Hi Patrick and welcome to a great place.

I am glad you found us here.

It took me years and years to stop worrying over things I can not control. Stress damn near killed me years ago and I will never go there again.

For me, I just let things roll and have learned to say, "It is what it is"!

Keep us posted as to how you make out moving forward and try to stop worrying about things you have no control over. You will be better off, trust me.

Nice to meet ya!:wink2::wink2::wink2::wink2::wink2:

 

[Patrickissickofit]

Hi again ,
can i just ask a few more questions can all this come on so quick one minute i have a water infection then the next kidney pains then all this tiredness and just the feeling of unwell everyday , i'm feeling a bit scared now i have two small children 5 and 2 and although i dont know if i have lupus alot of my symtoms fit alot of things on here .do people live long lifes as it mention things like the next 5 years on here ,i so need to see my kids grow up
Sorry to sound a bit over the top but this all started only three months ago with a water infection now i feel like s..t

 

[Salopsally]

Oh my goodness Patrick, Dont worry too much until you know exactly what you are fighting here.
Im fairly new to a Lupus diagnosis myself. You do feel pretty awful sometimes especially before you get diagnosed and on the appropriate treatment. When I was first diagnosed I was scared like you too especially when reading things about Lupus. Everyone told me not to read anything more than 5 years old because things have changed so much in the area of auto immune diseases in that time.
I dont think many people die these days but its important you get the right diagnosis and treatment. Stress and worry only makes things worse and can in itself make you very sick. Use that energy that you are using to worry to take control and get yourself the best treatment you can.
Honestly lots of people live long and fairly trouble free with Lupus and similar diseases. You just need to get diagnosed with whatever it is as soon as you can. Dont sit there worrying get back to the doctors and take charge of your own health. Its the only way. You know things arnt right so keep pushing for answers until someone listens.
You will get loads of help and support here so keep asking your questions because there is a mine of information and really kind people who know what they are talking about too.
Take care and good luck,
Sal xx

 

[LolaLola]

Hello Patrick,
Welcome here,
If you do have lupus you will certainly feel better after a while on treatment. Before diagnosis is hard. I can understand your worries as you have such young children. Doctors do take their time giving a Lupus diagnosis as it does affect things like Mortgages, Life and Travel Insurance. No one wants to be diagnosed wrongly, but it does mean it sometimes seems like it takes forever.
x lola

 

[Clare.T]

Hello again Patrick
I am wondering how you found this site, since it doesn't sound as if you were looking for 'lupus'. Maybe like many others, you came across it as you googled your symptoms. That happens often because lupus is a systemic multi system disease that can affect any body part. The range of possible symptoms is vast and it's almost as though each person has their own version. Almost anybody with poor health could come here and wonder if they have lupus.

It would be really freaky if in fact you do have lupus because it isn't all that common and because you are male so it's about 9 times less likely that you have lupus than if you were female.
In any case, it doesn't change the fact that you need to see a doctor and get these pains investigated with further imaging, blood and urine tests.

Lupus rarely comes on overnight. If people seem to get diagnosed and become very ill all of a sudden, it always turns out that they in fact had symptoms for some time often many years but either didn't think much of it or seek medical care or their concerns were not properly addressed.
This might not be anybody's fault, just real bad luck.

Most of the already diagnosed people here have the more severe forms of lupus and have had difficulty finding the right treatment for their case. But many people with lupus live perfectly normal lives with a normal life span and don't need the support of a forum.

We even have some members who were very ill but have responded to treatment, gone into remission and rarely visit if ever.

I am tempted to leave my post at that but there'll probably be some people who write in saying that googling symptoms is exactly how they first thought of lupus, so I suggest you take a deep breath and read the info articles about symptoms and diagnosis. Have a good think about previous health problems especially those that have recurred and also think about the chronic health of close blood relatives, diseases such as rheumatoid arthritis, strokes or thrombosis, women with frequent miscarriages,kidney disease for example, even mysterious skin problems.

You mention the five years thing, which is I think that if lupus is going to take a severe form it usually happens within the first five years. The other statistic is that over 95% survive over ten years which happens to be as long as that particular study lasted.
Sitting around worrying & feeding anxieties by reading up on the net never got anybody very far. Determine that you are going to do your darnedest to get to the bottom of your current poor health. Call your GP today. Get a complete blood count and urine tested. If there is kidney disease it will show up. It might take time and a lot of patience and it can be hard to bear, but only worry about what needs to be worried about and dealt with at any given time. Bear in mind that worry itself can make a person physically ill.

Good luck
Clare

 

[Patrickissickofit]

Hi all again,
just thought i would pop back on again still not feeling great went to my doctors and mention lupus to him as i am worried all the little problems i'm having maybe this,he didnt seem to think so but has sent off 3 lots of blood tests and 2 more urine samples to be checked will these tests show any signs as i know that lupus is very had to diagnosed .
still scared as all my symtoms fit in with lupus
1.kidney problems and pains in kidneys on and off
2.protein in wee
3. head aches and pains in neck(stiff)
4.weight loss feel thinner in face and hands and arms
5.tired and weak
6.nausa feeling sick suddenly
7.the odd rash or arm and neck
8. glands up and down and also salvia gland in mouth up sometimes
9. legs feel weak after sitting at computer for a while and hurt to touch sometimes above the knee

I think this all points to lupus but hey what do i know so scared as all i have heard is horror stories about this disease seems like you get 5-15years then it all goes down hill fast ahhhhhhhhhhhhhhhhhhhhhhhhhhhhh

right moan over thanks for listerning

 

[Patrickissickofit]

AHHHHHHHHHHHHHH forgot the funny blotches on hands looks like white and pinks dots :wink2:

 

[Patrickissickofit]

SO SORRY Clare i missed your post when ranting on about myself just read and your right i know only 10%men get lupus but looking back at my health it seems i suffered from alot of these things before but just this year they have got worse and more frequent but your so so right will wait for results and take it from there God Bless and good luck keep up all the good work and advice XX

 

[KarolH]

Hi Patrick,

Please let us know how the blood test results come back. We are more then curious to know the results if you want to share them with us.

Any idea how long before you get word on the results? Also, what tests did the doctor order for you?

 

[Patrickissickofit]

Hello all again,
right got my urine results back and gp said nothing in there to be concern about and he said the same with the blood results (not sure what they tested for but trying to find out)all i know was they took 3 lots plus 2 urine ,so i should be happy right,well i not, still getting problems mainly when i get stress or over do it i get tired again pains in my foot on the top and when i walk ,i have also notice a pimple type rash appear when i get these other symtoms and nausa(feeling sick)on and off .Just today i spent an hour putting lego things together for my son and my fingers just got all stiff it also seems my salvia gland in my mouth over produces salvia when i get a flare up still conviced i have lupus as i tick to many boxes,sorry to go on and on !!!

COUPLE OF QUESTIONS PLEASE!!
am i best to just get on with and hope i dont get too many flare ups and maybe the less i think about it the less i get flare ups or is it best to know for sure and keep pushing my gp

as this is a progressive illness will i get bigger and more symtoms i have looked back at things and have thought that i may of had this for a few years but just recently the symtoms have got worse due to more stress in my life IS IT BEST FOR ME AND MY FAMILY TO KNOW I HAVE LUPUS
MANY MANY THANKS FOR LISTENING BIG HUGS TO EVERYONE

 

[cath]

Hi Patrick,

Good to hear the blood and urine tests were OK. Do you know what was tested?

The standard tests many doctors would start with would be a general urinalysis (screens amongs other things for protein and blood), a MSU (to look for infection), a full blood count, U&E's, LFT's, and if they were wantingv to screen for lupus an ANA.

If all these came back normal, then it is very unlikely that you have serious problems with your organs, so that is great news.

If an ANA was done and is negative, it is also extremely unlikely that you have lupus. It is not impossible, but it is rare to be ANA negative and still have lupus.

SO, given your list of symptoms, and presuming your ANA is negative, I can't see that there is reason to think you have lupus. You don't have even one ARC criteria, and most people with lupus have at least 4.

That doesn't mean that in the future you won't develop other problems that do lead to lupus. It can't be ruled out completely, but I don't think you should be convincing yourself that you have it.

What you should believe is that there IS SOMETHING wrong with you. Most young men do not have these symptoms, and you do deserve to find out what it is and how you can manage it. It needs investigating further, preferably by a specialist. I'm not sure which one would be best for you - maybe a rheumatologist or an immunologist, or a general physician/internist. They should be able to at least give you a thorough investigation and look for possible causes. The other thing to consider is seeing a dermatologist about the rash on your arms. A biopsy may reveal what is going on there, and with luck even what your other problems are from.

Whatever you do, don't give up, and keep an open mind:blush:

X C X

 

[Clare.T]

Hello again Patrick

I agree with Cath that there is something wrong with your health but I need to address some serious aspects of your post.

I do not want to sound unsympathetic but you are now thinking as if you had been diagnosed with lupus, which is ridiculous. You don't appear to have taken any note of my comments below in response to you fearing you only had 5 years to live. Now you are talking about telling your family you have lupus. You assume lupus is a progressive disease which it is NOT.
I do think there is something physically wrong with you, maybe more than one thing, but your anxiety levels are so high I wonder if you are able to approach the topic rationally.

You have a right to your blood test results.

What symptoms do you have that fit with a lupus diagnosis?
See the ACR Criteria at the top of Not Yet Diagnosed to compare with your own. Lupus can be hard to diagnose because there are more complicated and untypical cases, but many lupus symptoms resemble those of other diseases. You didn't say how you came upon this site - was it looking up symptoms ?

I am sorry that nobody thought to advise you not to mention lupus to your doctor. Mentioning any specific disease is almost always a bad idea. It is OK to say that you wonder if your symptoms could be some chronic disease in view of past health histories. Does any close blood relative have an autoimmune disease of any sort or a connective tissue disease such as rheumatoid arthritis. What other chronic or repeated health problems have they had.

Yes, pursue your quest for answers. It might mean a lot of persistence but that usually pays off. But you have to approach this in a calm but determined way. Do whatever you can to improve your state of mind. That might be working on some relaxation and stress reducing techniques, leading as well balanced a life as possible with rest, recreation and pleasures, as well as eating a healthy diet by cutting out animal fats, reducing salt and refined sugars for example and taking some form of exercise even if it is a regular stroll. If fear is dominating your life despite your best efforts please speak to your GP. There are excellent medicines that can help a great deal to cope.
There is nothing worse than unfounded fears running rampant. There's no need to apologise for asking questions and expressing your concerns here.

All the best and keep in touch - we'll certainly help you all we can

Clare

 

[LolaLola]

Dear Patrick,

Clearly something is the matter. Just my advice as you are a family man, Lupus can seriously affect things like Life Insurance, Travel Insurance etc. It may be best not to mention your suspicions too widely. Obviously you must keep looking to find what is wrong. I know that can be tiring.
keep in touch,
Lola

 

[KarolH]

Clare and Lola are both right. There is something wrong and you need to get answers so that you can get treated and start to feel better.

You DO NOT want to label yourself with this disease as it can effect more then just life insurance, health insurance, etc......and with young children you need life insurance and other things to protect your entire family.

Why would you want to label yourself before your diagnosed officially? I had 4 doctors tell me I had Lupus before I even wanted to begin to believe it. I always try to look at the flip side of everything and see things in a different light. I am the queen of denial.:lol::lol::lol:

It is frustrating when you do not feel well and you want answers yet to label yourself with something you do not know you have is just crazy.

Lupus is the great imitator of many things and a lot of auto immune diseases can look like Lupus and yet be something very different. Take it slow and draw your conclusion once you have a valid reason to do so.

Press on until you get a diagnosis but don't put your chickens before the cart.