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paperbagprincesses
Regular Member


Date Joined Apr 2011
Total Posts : 94
   Posted 8/20/2011 7:38 AM (GMT -6)   
I hope I'm ok to share my 'story' and ask for some advice. I'm feeling frustrated, scared and annoyed and no one seems to get it.

Ok a bit of history, I have asthma, celiac disease, hypermobile joint syndrome, raynauds and I was diagnosed with fibromyalgia and chronic fatigue syndrome but I've had this taken off me. When I was 8-9 I had unexplained aching, sore, stiff wrists. When I was 11 I was told I had synovitis in my ankles.

Im 21 years old and about 12 months ago I noticed this weird rash on my chest. Spotted it getting out of the shower, I asked my GP, she didn't know just said it was change of season.

about 10 months ago I started getting sore knees and swollen fingers. Then my knees started swelling and my fingers hurting too. I went back to the doctor, showed her my joints and my rash that was still there. She said eczema. She ordered some blood tests, ANA (1:80 speckled) ESR (slightly elevated) CRP and CBC normal.

about 8 months ago I started getting dry eyes and dry mouth. I also started getting ulcers in my nose and a few in my mouth. My joints were getting worse and I was tired all the time and had no appetite. I felt like absolute crap. Blood tests ANA (1:160 speckled) CRP and CBC normal.

about 3 months ago I got really bad. The rash I had on my chest was also on my face and elbow. My knees were so swollen I couldn't straighten my legs. My fingers couldn't make a fist or straighten. My joints were red, hot, sore, stiff, grinding and clicking. My GP was freaked out (I could tell, it was at my university student health where they're use to pregnancy tests and genital warts). She rung a rheumatologist and he said "it definitely sounds like some sort of autoimmune inflammatory arthritis. Give her a month course of prednisone and urgently refer her to a rheumatologist". That was all done and I had major relief while I was on the prednisone.

One week after coming off the prednisone I had my appointment with the rheumatologist. My first appointment went badly. She spent the appointment answering her pager and cellphone. She got angry with me for having gone on the prednisone and didn't believe my joints were ever swollen! I showed her the rash that was on my elbow (the same as the one I had on my face and chest) and she said it's just eczema, talk to your GP

She ordered lots of blood tests with all the special antibodies and stuff. Everything came back negative, including my ANA. This was 1 week after the Prednisone and my (new, because I'd had to move back home because I was so unwell) GP said she thought that the prednisone would have skewed my blood tests.

So I went back to the rheumatologist, appointment two. She said my problems were mechanical and emotional and sent me to a physio. I took some photos of my swollen knees for her and she said that I'd just angled the camera and propped my knees up to make it look swollen. My knees were red, hot and sore. My mum felt them when I'd taken the photos and she knew they weren't right.

So I went along to my physio appointment. She said to me "why are you here? You've obviously got something rheumatological going on. I can feel fluid under your knee caps". She told me I should definitely get a second opinion. At my second appointment she said she'd passed around her notes to the other physios and they'd all agreed that it was rheumatological and she'd been instructed not to manipulate me anymore and to strongly recommend a second opinion.

(thanks if you're still reading!)

So I couldnt get in with the last GP I saw so I had to see someone else. I went through my history (as above) and told her about how I'd been treated by the rheumy and what the physio said. She didn't hesitate to re-refer me and ask for me to see someone else at rheumatology. She said she could feel a little bit of fluid under my left knee and I told her my knees were ok but it's my shoulder that hurt the most at the moment. She felt my fingers and said that sue can feel bony nodules on my finger joints (no idea what that means).

Then I said to her that I have this rash on my elbow, the rheumatologist and other doctors have said it's just eczema but I don't think it is. She had a look and she said "that's definitely not eczema that's a vascular rash. They are very common in autoimmune diseases" she then said "the strange thing is I think because of this rash you'll now be taken seriously and I have no doubt this is autoimmune, I think you have Lupus".

She made me go and get more blood tests done (and the stupid nurse hit a nerve) about coagulation or something.

I have no idea what's going on with my body. I'm sick of feeling like this and I have no idea why and why my blood tests don't seem to show what all (except the stupid rheumatologist) think it is! I'm feeling sore and tired and I just want some answers!!

Thank you for reading

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 8/20/2011 10:13 AM (GMT -6)   
Thanks for sharing your story with us. Unfortunately getting Lupus diagnosed and taken seriously can be a battle.

I hope the next rheumotologist you see is more mature and will take you seriously as a patient. Is the person part of the same practice as the f1st rheumy? I recommend going to a different practice altogether, as drs don't like to disagree with each other.

Hope you get some treatment and feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 8/20/2011 10:28 AM (GMT -6)   
Hi! and welcome,
Please hang tough and get copies of every test, and every picture you can take, and every md report and don't give up looking for a decent doctor. There are more than a few out there. Just don't give up. AI illness is one of the toughest to diagnosis. I kept a notebook of all abnormal labs and made a time line of my symptoms with a when and a where. When I was forced to stop working and apply for SSD, that notebook was a blessing and really helped me fill out the required paperwork for social securitity and my retirement disability.
hugs,
suetoo.

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis, Degenerative Osteoarthritis, Asthma
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. (20-40mg prn), Vit. B12 2400 mcgs, Vit D 1000U and Ambien every night. Advair, Albuterol and DuoNeb inhalers.

paperbagprincesses
Regular Member


Date Joined Apr 2011
Total Posts : 94
   Posted 8/20/2011 10:39 PM (GMT -6)   
Thank you Suetoo and Lynnwood.

Unfortunately the new rheumatologist is part of the same practice. My city isn't that big and they all work at the same practice. My only other option would be to travel 4 hours to see another rheumatologist. The latest GP said that I shouldn't have to do that. I have a friend who lives in New Zealand (where I live) and she said that she thinks I'll have better luck with the new rheumatologist. She said that she thinks the new rheumatologist will want to do better and work out what it is better than the first. So lets hope she's right!

I've got copies of everything, blood tests and doctor's reports and pictures. So hopefully they'll be able to work out what's going on soon! I'm sick of feeling terrible!

Thanks.

Taina
New Member


Date Joined Sep 2011
Total Posts : 5
   Posted 9/7/2011 12:52 AM (GMT -6)   
Hi paperbagprincessNZ

Just wondering where you NZ you are? We are in Hawkes Bay, my mum has Lupus, and cannot find a good specialist. She's been to specialists in Wellington and they were very similar experiences to yours with your first appointment..shocking, I just can't believe that there's noone that can really help out there??
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