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Old 07-22-2011, 04:06 AM   #1
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I had my diagnosis taken off me

I'm just so confused! When I was 18 I was diagnosed with FMS. In the past 9 months I've had swollen, sore, red, hot joints. My GP said "that doesn't sound like Fibromyalgia, it sounds like some sort of autoimmune inflammatory arthritis". I had blood tests and I had an elevated ANA and ESR. My GP put me on Prednisone for a month which was a life saver!

I saw a rheumatologist who ran blood tests (heaps and heaps of blood tests) and everything is all normal. She doesn't know what's going on. At the appointment she didn't seem to believe me. In the letter she said "she was diagnosed with Fibromyalgia in 2008, this has now resolved"... The letter had no mention of what it might be. My rheumatologist isn't very friendly, she doesn't seem to like me asking questions. And I can't change doctors (I live in New Zealand and things work differently here)

So I've got no diagnosis! At least when I was diagnosed with Fibro, I knew it was that! =[

Thanks for reading/listening.

 
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Old 07-22-2011, 07:11 AM   #2
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Re: I had my diagnosis taken off me

hi,
will your GP order blood tests for you? if so i would ask to be tested for sjogren's disease. i was never checked for that one and last year i asked for it. it seems it is not on the list of things to check? anyway, i have it. steroids are helping, went on them a couple of months ago. i have swollen joints that turn red, hurt like a mad mother and burn. it comes and goes in cycles/flares. mimicks fibro that way. underlying discomfort is always there.
the first thing most people notice is dry eyes, mouth and/or skin. tooth pain, dry nose too. dry vagina, painful sex. oh, and let's not forget, joint pain!!
it's worth asking just for your peace of mind. what caught my eye is your statement that steroids helped.
if at all possible don't walk away from knowing. tell your doc you want it for peace of mind if nothing else. i also ordered other specific tests be done. they came back fine. after all these years of being told i may have lupus, or i do have lupus, i had the test and i do not have lupus. finding answers is not a guessing game it is a game of questions and tests.
hang in there girlfriend. this is not an easy road, nor is it a smooth one. we are all here for you.
peace,
blue

Last edited by bluelakelady; 07-22-2011 at 07:15 AM.

 
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Old 07-22-2011, 12:41 PM   #3
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Re: I had my diagnosis taken off me

I TOTALLY AGREE WITH BLUE....hang in there !!!!!!!!!!!!!!!!!!!!!

 
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Old 07-22-2011, 01:14 PM   #4
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Re: I had my diagnosis taken off me

Always love to read bluelakelady's posts-wish she was my mom or sister!

 
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Old 07-22-2011, 05:58 PM   #5
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Re: I had my diagnosis taken off me

Thanks everyone.

I've had the tests for Sjogren's, Lupus, Rheumatoid Arthritis, Scleroderma, ANCA, hepatitis and heaps of other things. I've had a chest x-ray too. The rheumatologist did the schirmer test, and that was fine too. When I went to my GP two weeks ago, everything was normal. Including my ANA and ESR.

I know I have a few symptoms of Sjogren's, but none of the tests seem to agree.

Thanks again, I just want some answers!

 
Old 07-23-2011, 06:39 AM   #6
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Re: I had my diagnosis taken off me

hi,
i was re-reading your first post. resolved does not mean gone. just means it is maintained. it means they, giggle, have stabilized your condition. pardon me while i fall on the floor laughing at that concept. (peals of rich laughter) up off the floor, okay now, are there any other aspects of your body that have altered since the joints started 9 months ago?
will do a bit of research and get back to you if i find anything else. in the meantime would you mind looking at your records, see specifically what blood tests were run, how long ago and post that for me to refer to as i search for answers too? an extra brain never hurts, giggle.
peace,
blue
ps thank you mona. tessa i am always open to adopting another kid! giggle.

 
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Old 07-23-2011, 06:42 AM   #7
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Re: I had my diagnosis taken off me

oh and what your counts are on those tests please.
peace,
blue

 
Old 07-23-2011, 07:16 AM   #8
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Re: I had my diagnosis taken off me

Thank you bluelakelady! I appreciate your reply. I'm not on any medication for the fibromyalgia symptoms I was experiencing. So I don't know what has changed. Although I'm releved I'm not experiencing it anymore

I'll give you a little back ground into my health as it might help. I really appreciate you taking the time to help me!

When I was 11 I'd sprain my ankles quite often. I developed synovitis in my ankles and had steroid injections. I didn't feel they were helping so I stopped. Two years ago I tore a ligament and had my ankle xrayed. They said I had some damage and rounding off of the ankle joint. I didn't think anything of that.
When I was 15 I got the Epstein Barr Virus. I didn't know until after and didn't take it easy. My GP said I had post viral fatigue syndrome that lasted 3-4 years and I was slowly recovering. When I was 15 I also went through a number of traumatic events. If you think this is relevant I can go into detail. I also had a back xray and they said I had kyphosis and a slip of the vertibrae. I had migraines from aged 15-18. I had b12 and foliate deficiencies from aged 16-17 and at 17 was diagnosed with celiac disease. At 18 I was diagnosed with fibromyalgia and raynaud's disease.

About 10 months ago I noticed these new symptoms. Mainly sore knees, slight swollen fingers (at the PIP joints). I had no muscular pain. I was fatigued, like I'd taken a huge step back to the PVFS. I then developed a rash on my chest then face (not a butterfly rash). I showed my GPs. The first one said 'changed of season' the next had no idea. Then I got one on my left arm (which disappeared on Prednisone and has come back since being off it). Then my fingers started hurting as well as swelling. Then I started getting dry, sore, irritated eyes. My mouth was always dry. Then I got ulcers in my nose. And then my knees started swelling and my fingers swelled worse. I couldn't straighten my legs because my knees were swollen. And I couldn't straighten my fingers right out or make a fist.

When my knee pains started the doctor ran CRP,complete blood count - both normal. ANA and ESR both slightly elevated. I don't have the values

Then I went back when my eyes started. They did hand and knee xrays, normal. CRP, complete blood count, rheumatoid factor were normal. ANA elevated speckled pattern.

When my symptoms were at their worst (unable to straighten joints etc) my GP ran CRP, complete blood count, ferretin, anti-CCP, normal. ANA same again.

I then went on a month course of Prednisone (20mg, reduce by 5mg a week). I felt like a new person. I could use my joints without pain. My rashes and nose ulcers went away. My eyes weren't as sore and the GP said they looked less irritated. I came off the prednisone 1 month ago yesterday.

I saw the rheumatologist 3 weeks ago. She said that my symptoms were masked from the prednisone and the joints weren't swollen. I told her my other GPs had seen them swollen but she wasn't really interested. She sent me for blood tests, like heaps of them! I haven't got the results yet (I'm going to ask for a copy for my file). She ran all the ones I've had before as well as heaps more. I saw my GP 10 days after the blood tests. She said so far everything had come back normal including my ANA. I also had the Schirmer (sp?) which was normal.

In my letter from the rheumatologist it said all my tests were normal so far except my white cell count was up which is consistent with being on Prednisone but she was still waiting for a few more tests.

I've taken some photos of my swollen knees to take with my to my next appointment. Apart from that I'm at a dead end.

Thank you so much for taking the time to help me and read all that lol I realized I just wrote a novel!

=]

Sarah

 
Old 07-23-2011, 07:38 AM   #9
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Re: I had my diagnosis taken off me

hi sarah,
thank you for allowing me to join you in your quest for answers. i will be interested to see what the results are. you have been off steroids a month and the blood work was done one week after you stopped? steroids will alter results as they do calm down the systems of our bodies. you may have to do it again in a couple of months. can't remember how long it takes to return to origional state.
when you get your copies also get any past blood work done in the last year so we can compare them.
from your history sound like you got fragil genetics like me. body issues from the get go. giggle. as for the emotional aspects you may feel free to send me a private message. it may play into the depression; so yes it may be relevant. it's not always easy to share our most fragil moments in life publicly. your choice. i do live with ptsd related to violence in my past. tho i do not experience depression i am still jumpy and tend to over react to memory stimuli.
peace,
blue
ps. you can take your tests to your g.p and ask for them to be done again after the steroids clear your system completely. will have to look up the time frame for dispersion. the memory is not what she used to be, giggle.

 
Old 07-23-2011, 06:34 PM   #10
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Re: I had my diagnosis taken off me

Thank you so much for taking the time to reply!

Yes that's correct about the blood tests. I'd been on the Prednisone for 1 month and I had the blood tests 1 week after coming off them. I'm just hoping the rheumatologist takes that into account when she looks at the results. I don't feel anywhere near as bad as I did before taking the Prednisone. I don't feel great, but I don't feel terrible either.

I don't think I got dealt fair cards to begin with. No one else in my family gets sick like I do. I agree the emotional part most likely has something to do with it. I appreciate your offer, my experiences were probably somewhat similar to yours.

If the rheumatologist discharges me, I will find a GP who can order these tests regularly. I'm just hoping it doesn't come to this and she'll treat me. I've got the photos of my knees swollen, I've had other doctors see them swollen (not that she cares!) and I responded well to Prednisone.

Thank you so much for your reply, I really appreciate it!

Sarah

 
Old 07-24-2011, 07:00 AM   #11
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Re: I had my diagnosis taken off me

hi sarah,
nobody gets delt a full house girl. i am the only one in my family and very glad of it. i would not want anyone to feel what i feel. my family is very supportive and loving. i am the baby. love being the baby!! giggle.
there are gobs of rheumy's to choose from. you may have to start all over but it's worth it. i fired mine a few months ago after 10 years. delighted so far with the new guy. be persistant, take notes with you on what you wish to discuss, take your pictures and i guess hope your knees swell before her eyes. eesh! not that we want you in pain, however, if it helps the doc to "see"??? ya know?
sweet girl if you have been thru what i have been thru you have my heart. i know i have shared some of it here and there on the boards, as was fitting to the topic. some things tho stay between me and my creator. shared in private with a chosen few.
blessings of a beautiful week with the rays of sunshine coming from you!
peace,
blue

 
Old 07-24-2011, 07:31 PM   #12
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Re: I had my diagnosis taken off me

Hello,

Thanks and you're right. No one gets dealt a full house, but it seems my 'hand' would have probably been worth 'folding'.

I am too glad that the rest of my family are relatively healthy. You're lucky you have such a caring family. I know my family do care, but they don't often show it.

I know realise not all rheumatologist are made equal. I'm sure the one I'm seeing is very good (she is thorough), but she doesn't seem to suit me. I would be more inclined to go look for a new one, but where I live there aren't very many to choose from. And they all work at the same hospital and all discuss the cases etc. So I would most likely be passed on to more of the same and I'd be known as the difficult one.. and most likely get the same treatment again!

I know it's horrible to think, but the only way I might get her attention is if she seeing my swollen joints. And I can't just turn them on and off! She it's just 'luck' if she does happen to see me when my joints are swollen. I hope the photos will be a start. I'm just afraid she'll say that she doesn't believe me/there's nothing wrong/can't help me. Then I'm left to deal with it on my own!

I doubt our experiences are identical, but I'm sure they share more similarities than differences. Thank you, I really appreciate your support and kind words =]

Sarah

 
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