? autoimmune kidney probs??

[Manxie]

Hi,
    I have undifferentiated connective tissue disoder and hypothryoidism. In past four months i have had three episodes of lower abdo pain. Doc thought it may have been ovarian cyst but scan showed nothing - secomd episode about six weeks ago they thought unrine infection although no absolute proof of that and gave me course of antibiotics. Anyway tow days ago the pain came back with a vengeance and felt worse - today i noticed blood in my urine and went to A and E as it was after normal doctors surgery hours. They detect plus three blood in my urine but no protein and no other sign of infection. I feel shaky and very sore - they seem to think it may be connected with the autoimmune disorder and have advised I see the GP on monday if still in pain (or week after if not) to discuss these three episodes of recent abdo pain and now blood in urine. I'm a bit worried by this as it seems the autoimmune disorder may be attacking my kidneys to me??? any thoughts? what should i ask the specialist whom im due to see on May 14th? they are planning to do repeat blood tests and urine test on 7th but are there any other tests that would rule out kidney involvement now with my utcd??
          Thanks for any help or advice
               Manxie

[Manxie]

Dear anyone who can help!!
Ok not good news at all at rheumy review today.
1) He now states I definetly have an autoimmune disorder - he just doesnt know what yet. 2) By the blood tests and recent history he thinks it is my immune system that is attacking the kidneys - not a kideny stone at all.
3) My blood presure despite being down at home this last week was up at the clinic and I didnt even feel anxious etc - consequently he has now asked me to double the anti-hypertensives!! this is within someone who had no hypertension a month ago and that is evidenced within his notes at the last review. So insode one month ive gone from no hypertension to maximum dosage of the Ace inhibitor im prescribed only a week ago!!
4) My C reactive protein is 2.5 - he says this proves i have inflammation and alongside the previous high ANA and high anti smooth muscle antibody in past this is why he is now saying deffo autoimmune.
5) He's referred me for tests for wegners granulosistis/sydrome (prob not spelt right) and/or chaug strauss syndrome as he is now querying such a pulmonary/renal disorder. That is real worrying and i wonder if anyone who has that cna help me understand these more so I can work out what I should be watching tests i should ask for or anything else i should know??

I'm a bit shell shocked - this is all happening so **** fast and i dont know much about these syndromes - the blood pressure is very worrying too - if it keeps spiralling god knows what will happen. Oh and i'm still in pain (right lower abdo) and its getting worse again. Comes in bouts and isnt as bad as it was when admitted to hospital. Specialist was like a totally diferent doc today - much more worried, more concerned about my responses, more time given, and genuinley seemed to care - suprised at that and in some ways worried as he was not worried at all nine months ago!- despite ANA 640 over three tests.

I guess i just need to share and see what all you lovely people here can do to reassure or advise me??
Thanks Manxie (Ali)

[OldFatChick]

Hello!  I can tell by your posts that you are scared. Have you posted in the auto-immune forum?  Perhaps someone there will have more info for you. I have undifferentiated connective tissue disease and hypothyroidism, as well and on my last labs they saw protein in my urine so I had to do another urinalysis and am awaiting results.  I am new to all this mess, too, so I can understand your feelings of fear and confusion.  Unfortunately, we have a disease that tends to lend itself more to questions than answers.  As most people with auto-immune disease can tell you, symptoms come and go, they change from day to day. It is so easy to get discouraged  I am, however, encouraged by your reports of your doctor's concern, so many of us are basically told it is all in our heads. The best advise I can give you is to question, question, question your doctors.  If they cannot or will not answer your questions, ask them to refer you to someone who can.

And if you don't get your question answered right away, keep trying.  Sometimes the person with the answer you need may not have seen your question yet.  Good luck to you and keep us posted!

[Manxie]

Hi,
Thanks for your response hun. I have posted in the autoimmune forum too yeah.
  I still have no answers as yet and have been admitted to hospital again over last weekend with bad pain and hypertension despite the medications. In myself feeling a bit better now but only becos im full of pethidine and antibiotics. Just hoping they get to the bottom of all this soon.

      Thanks for your support
              Manxie

[luppygirl]

I wish i could help you i only know about lupus, rhuemtoid arthritis and ulcerative colitis. I have no idea of about your autoimmune disease but I do understand the worry and fear I wish i could help with that or I wish someone will come along soon that can help you. Try to keep your chin up and if you can't find info that you are looking for on the internet try the good old fashioned library or book store you would be surprised what you will find there. Best of luck and keep us updated so we can learn more about also.

[OldFatChick]

What meds are you on?  See if you can get the results of your tests. You can look up the test result ranges on the internet and it can give you a little insight on what your doctor is looking at.

[karajo]

How are you doing?  I know there are people praying for you.  This is a good site to be on.  

Could you fill me in on undifferentiated connective tissue disoder.  Is that like Mixed Connective Tissue Disease?

Where exactly have you been hurting in your abdomen.  I thought the kidneys were in the back (flank area).  I'm learning.

Praying for you girl.

[Manxie]

Hi girls,
     Ok thanks for your support - working backwards here - kidneys are in back apparently pain usually there too if kidney related - however mine was (still is a bit but much less and less often) in lower abdomen almost groin level.
    Undifferentiated conective tissue disorder is when they know you have an autoimmune disorder but it doesnt fit neatly into any box of thier criteria. Mixed tends to be when it overlaps so in some ways is worse I guess but undifferentiated is frustrating exactly because its not well understood and isnt clear so medical system seems to downgrade it if you want to out it that way!
      I'm doing a little better - thanks for the prayers - still no def answers need to phone and push but now ive got to the point of avoiding that call! ever been there?? My blood pressure appears to still be up but not as bad back on one tablet of meds but I've done that with daily tests and reduced tab myself - doc hasn't told me too. Ongoing diarrhoea for over four weeks now and losing weight still but slower.
       At moment back on just thyroxine and perendopril for bp - px steroids for flares but havnt taken them since feb this year when i took for five weeks within flare of joint pains tiredness etc. worked hard to get of them and antimigraine tablets then this happened! Doc may prescribe more i guess when i finally know what is happening? Finished antibiotics and painkillers etc last friday and have been ok so afr since doing so - had hoped the diarrhoea would stop after that but not so -so far anyhow.
         At least im at home back at work and doing ok - in some ways feel i want it to stay that way so much that im avoiding the phone call re results - in some ways i guess no news is good news!?
          Love Manxie

[karajo]

Glad to hear that you are back at work.  Praise the Lord!

The reason I asked about the location of your kidney pain is, I too have kideny problems.  I just don't have the elvated BP.  The pain is in the flank area, but I also have pain in the front "going down" into the groin area.  I don't rest well at night due to the flank pain.  But I guess they are going to wait until it is really bad before they decide to do anything about it.  

I'm assuming your problem with your kidneys are from the autoimmune problem casuing inflamation (inflammation) in the glomeurus (sp?).  

Jesus loves you,
Kara

[Manxie]

Dear Karajo,
       Yeah still feeling ok so far - pain there at times but much less than it was previously. Bp up and down like a fair ride! I have no idea if i have the inflammation in the glomeurus hun as all the specialist has said is he suspects pulmonary renal disorder. I looked this up and understand that the autoimmune disorder attacks the blood supply to the renal and pulmonary system within this? So far thats all i know
             Ta Ali xx

[Manxie]

Hi fols just quick update - been feeling good recent weeks despite ongoing diarhoea and high blood pressure. However last night the awful lower abdo pain returned!! and so did loads of blood in urine - like darker than the darkest area on the dipstick! - some protein in the urine and white blood cells too. None of this was there when the pain wasnt. Pain not as bad as when in hospital but blood pressure not at all good yesterday either even with maximum dose antihypertensive. I am soooo fed up of this! The docs at the hospital didnt seem to know what it was - the specialist thinks pulmonary renal autoimmune disorder but hasnt been in touch since the tests depsite my calls to his secretary. And the gp surgery told me two days ago that their tests need discussing with the doc but its taken them three weeks to tell me and even then only when I asked them not the other way around. Please dont tell me to change my doc becos I cant I live on small island and this is the the way the national health service is here - it ***** but these are the only docs we have and second opinions are really hard to get as the health service would have to send us of the island to the mainland and they resist doing that unless absolutely necessary. I am just so fed up though with no answers but ongoing pain and hosiptialisations. Can anyone help?
         Ta Manxie

[cudagirl]

I just scanned through the comments, but have you ever had a kidney biopsy?  That is a for sure way of telling you what is going on in there.  I know how frustrating it is waiting, and you don't want to be sick. Hang in there, they will find out what is happening.  Being in the hospital stinks I know.  I was just in there last week.

Good Bless You!

Pam

[Manxie]

I havent had a kidney biopsy nope- i'm awaiting the blood test results and have no idea when ill get to see the specialist about those. Guess he will only do the biopsy if he still suspects pulmonary renal disorder when he gets those tests. I have been told that i need to speak to the gp again on the basis of some of my results but i have no idea which results they mean as they did so many ( anca tests, esophonil tests, hormone tests for polycystic ovary syndrome, cholestrol tests, thryroid tests, liver function, and something to check the reaction to the ace inhibitor Im on in past six weeks just to mention a few and there were unrine tests to check for casts etc too and hes ordered a 24hour blood pressure thing which i havnt had yet). So i feel im trapped in no mans land till those results and cant seem to get hold of them via phone calls to the specialists secretary.

Kind Regards
Manxie