Possible Autoimmun or not? Should I be worried?

[Mirell]

Greetings from Norway! Found this great forum and thought I’ll give it a go

I’m really angry now, I had written this loooong post for you (a rant) and manage to delete it! So annoying, so here comes the «short» version.

Ive had blood test with positive RF with titer up to 24, Ana immunophlorence positive, but negative CTD screening (false positive?) Normal CRP. Anti-CCP negative.

2 years ago very low d-vitamin on level 10.

Im one month into recovery from nephrotic syndrome, Minimal Change disease. Ive had health issues for 2 years with edema in legs and joint and muscle pain. My doctor never found out (or didn’t do the right blood tests, never asked for a urine test!) what was wrong until it got pretty acute with severe edema all over, fatigue, flank pain, shortness of breath and literally just felt like i was dying.

Im on prednisolon now, down from 50mg to 20mg. Recovery is going great, my kidney doctor told me its unusual to see such a speedy recovery! Of course im not out of the woods just yet, but at least the worst is over.

I still have the joint and aching muscle pain, headace, flank pain (dont know why, no indications on blood test why, its the same pain I had before I was hospitalized and after kidney biopsy), pain- shock and numbness in my left pinky finger and I feel very quickly exhausted and tired.

Last august I met with a monster of a rheumatologist, awful doctor, but the point is that she didnt find anything to suggest a autoimmun disease back then.

I wonder if this is something of consern? Of course you cant answer me right or wrong, but I would appreciate some advice and suggestions. MCD is not normally caused by autoimmun disease, but I did read some articles that it should not be exluded.

For 2 years Ive had health issued and symptoms thats been eating me up, pushing myself at work with this degrading feeling that my body was always working against me. I eventully have to get back to work (or find a new job), but I cant stand the thought of working with these issues anymore. Ive done that for so long and it has made me depressed and changed me somehow, I feel less happy.

SO, TO THE POINT:

Should i persue this and ask for a new referral to a rheumatologist or just wait and see how it developes? I’ve felt like such a hypocondria the last 2 years with my doctor telling he dont know whats wrong and that there was nothing to do about the swelling and pain and that maybe it would go away by itself. Well, my instincts were right, it was my kidneys, I knew something was way off, and Im so glad to have proven my doctor wrong.

I’m so fed up with doctors now, seems like they dont take you serious unless its an emergency. I had to become very ill to get help, before i was admitted to hospital my albumin levels was at 18, colesterol at 9,1. No wonder wonder i felt bad, went to my doctor 3times in a month for desperate help and he didnt take it alot serious before the third appointment, was urgently admitted to the hospital later that week.

I’m hoping my english isnt bad! Hoping for some advice and I guess I needed to rant a little...

[KayHimm]

You ask a great question. I can imagine you are pretty angry to think you were not diagnosed earlier. You would have to see what the rheumatologist found at that time. If you had no signs of inflammation such as arthritis or the nephritis you have now and negative blood tests, it could have been too early to diagnose. Sadly, it is not uncommon. They need better tests, that is for sure.

Wish you had not had to go through this. Terrific you are responding so well to treatment.

K

[Mirell]

Thank you for your reply! The rheumatologist found nothing at the time, she was rude enough to suggest I was pregnant, I guess Im some sort of elephant, awful long pregnancy.

Yes, i’ve read some posts in here of people being upset for the difficulty in diagnosis, very frustrating. I understand that its not easy for the doctors as well, seems like its alot of wait and see what other symptoms occur. But it surely seems like life is put on hold.

Its been hard and I’m so glad to finally getting treatment for the nephritis, but it has raised even more questions (along with my other symptoms) as well. I have an doble-appointment at my doctors office tomorrow to remove a mole, hopefully there will be time for a little chat about what to do next!

[Krazykat26]

Greetings Norway!! Welcome to the forum!! 💐

Sorry to hear that you've been so poorly but glad to hear that the prednisolone is helping u..that surely is a sign that u have something more going on and u r right to have concerns so I would say yes push for a referral to rheumatology..GP's don't get hardly any training in autoimmune disorders in the UK n therefore they're pretty clueless whereas rheumatologists r the detectives it seems!! At the end of the day u know your body better than any doctor n u r living with your symptoms 24/7..so please put the feelings of being a hypochondriac to the back of your mind n just tell your doc what's going on..keeping a symptom diary n any pictures of skin involvement always helps..I write down questions beforehand n take it with me to appts so that I have reminders of what to ask!!

Of course I have no idea of how the health of people in Norway is managed..whether u have to have insurance etc..I'm not well travelled

Good luck with your appt xx

[Mirell in reply to Krazykat26]

Thank you for taking the time to reply❤️ Its a great forum!

I will tell him my concerns and ask for a new referral. I agree, just a few days after starting on prednisolon my body grabbed the first chance to heal itself, it seems. So my immunsystem is off somehow and I sure want to know why to have some more quality of life.

Its silly to think that Im a hypocondria, I know, I guess thats what happens eventually when doctors dont seem to take you seriously. Im gonna man up and put that feeling away!

Im keeping a good eye on my skin, nothing big there. Just hard skin that peels off and a bit redness on top of my big toes. Also have gotten some new small red spots, the ones where the small blood veins in the skin looks like they have burst, if you understand.

The health system here is good on the economic part, we pay a lot of taxes so that gives us (almost) free public health care. We pay a deductable and when we reach the limit its free for the rest of the year. Im already there👍 So thats great though!

Thank you so much for your advice and encouragement, its highly appreciated!

[Lapetite]

Hello from the eastern part of the USA. I too had awful nausea, edema, eventually diagnosed as nephrotic syndrome and after a biopsy, MCD. Prednisone for 9 weeks. It responded well but I have been told prognosis is unclear and it can lapse. Prednisone was awful. Sharp drop in BP, fainting, dehydration, blurred vision, and weakness as you wouldn’t believe. Does anyone here know about leading global research on MCD,databanks, best persons or articles on this etc?