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geraldine
03-28-2013, 05:53 AM
Hello, Geraldine here from sunny Australia
I was a bit reluctant to join, because I haven't been officially diagnosed with lupus and sort of felt like an intruder, but my experiences so closely match some of the ones I have read on this site that it was quite a relief to land here - almost felt like 'coming home'
I won't bore you with a list of my symptoms, bad experiences with dismissive doctors and current intolerable ill health right away - I am just glad to have a place where people understand.
I look forward to getting to know you
Cheers

rob
03-28-2013, 06:12 AM
Hello Geraldine,

Welcome to WHL. Don't worry, you're not an intruder. You don't need to have a Lupus diagnosis to become a member. One of our goals here is
to help people who think they may have Lupus find the answers they need through educational articles as well as through practical advice.

So, you've come to the right place. Make yourself at home!

Rob

geraldine
03-28-2013, 06:36 AM
Sorry to be tedious, but would you mind if I listed my symptoms? I am also interested to learn if anyone is South Australia has found a good Lupus doctor?

BonusMom
03-28-2013, 07:19 AM
Welcome aboard!

One of the best places to read that often gets overlooked are the "stickies" at the top of each of the forums. They provide answers to FAQs, info on why the supposed natural "cures" for SLE are unproven, common symptoms of SLE, general info about autoimmune conditions, and the like.

Make yourself at home and dig in! We're glad you found us.

steve.b
03-28-2013, 08:36 AM
hi Geraldine, I am from WA. we have quite a few other Australians on here, but I am not sure who is from SA. again welcome, and yes you can list your symptoms on here. I would remind you though, that there is 63 auto immune disorders. and many of the symptoms are the same. this is one of the reasons doctors have such a hard time diagnosing us properly.

Nicole
03-28-2013, 09:41 AM
Hi Geraldine,

Welcome to our forum. I would love to hear your symptoms. That is one thing I find very interesting. Though many cases of Lupus are different we can learn from others experiences especially if they resemble our own. I hope you can find done answers soon and don't worry about boring anyone.

Nicole

geraldine
03-28-2013, 02:45 PM
Thank you so much, you are very kind and I am only used to very dismissive - ok - here goes:
Confirmed diagnoses - axonal sensory polyneuropathy, orthostatic hypotension (fluctuating) arthritis of spine, 'gouty' arthritis of knees, carpal tunnel syndrome (fluctuating) psoriasis - diagnosed by a pharmacist - (fluctuating) pitting oedema (ankles, lower legs) generalised microangiotic changes, mood disorder, cardiac ischaemia, nausea and diarrhea (fluctuating)
I am currently experiencing - severe bilateral leg pain/rib pain plus back pain, difficulties regulating body temp., tinnitus, nausea, especially around food, and diarrhea, pitting oedema, chronic headaches, mood change, photosensitivity (no obvious rash, but eyes very sensitive and extremely itchy on exposed skin after sun exposure) orthostatic hypotension, weight loss, some sort of movement disorder of legs (like I'm riding a bike) that is not there when I go to bed but wakes me in the early hours every morning and forces me to get up, these are the distressing ones, anyway, they began about 5 months ago with balance issues and the neuropathy diagnosis and have worsened since then.
Bloods - abnormal, but fluctuating thyroid function assays, very high, but fluctuating adrenaline/noradrenaline blood serum levels. I also had an ANA but it was only mildly positivite - 80 speckled and my ENA's were negative. Last bloods were taken in Oct. when I was just starting to get sick.
I am 52. As a child I was diagnosed with 'growing pains' whatever that means. I only started to get these periods of being really unwell in my mid-twenties which coincided with my first episode of 'psoriasis' now that I think about it, I get a small outbreak of psoriasis just before periods of illness, hmm.
I am seeing a general physician soon. I was thinking of asking for more bloods and repeat ANA if he doesn't suggest it. I'm not looking forward to the appt. because, as many of you will know, being treated like a hypochondriac and dismissed gets you down after a while and you begin to despair. I think, well if all of these symptoms are in my head I should probably be committed. Is there anything else I should get him to look for, if he tries to fob me off too?
Thanks for listening. To those of you celebrating Easter, have a good one.

Nicole
04-04-2013, 09:48 AM
Geraldine,

Have you considered seeing a dermatologist for your psoriasis diagnosis? I have a rash on my forehead that flares with my lupus. I think the rashes can be quite hard to figure out. A dermatologist could biopsy your rash. My dermatologist was more thorough than my rheumatologist and ran blood work for several more diseases to make sure the rheum wasn't missing something. Anyway, just a thought :)

I do hope you get some answers.

Nicole

geraldine
04-04-2013, 02:32 PM
Hi Nicole
Many thanks for replying - I didn't think anyone was going to, so it was very nice to hear from you
I think your suggestion is good as it approaches things from a different angle and maybe someone with fresh eyes! It's so hard to see any specialists where I am - have a 600km round trip for most.
All the best, hope you are well at the moment
Geraldine

tgal
04-05-2013, 07:24 AM
Hi and welcome to WHL! Don't worry if there is no immediate response we are not all on at the same time. The dermatologist idea is a good one. SOMETIMES a biopsy of the rash is the first step to a diagnosis (notice I say sometimes because like everything else there are many different rashes).

Sadly the info you have been given above is correct. It can take years and even decades to get a diagnosis depending on the doctor(s) and what they require seeing. You know your body and you must be your best advocate. I would suggest making a list of all of the blood tests you have had come back "out of range". Take them with you to the doctor but DO NOT give them to the nurse. Give the. To the Dr. When he comes in the room. It makes him look at them and makes it easy for him to see instead of having to go through pages and pages. I also wrote down a 1 page history that I have at the same time. Since I tend to get confused and forget thing it gave the Dr a basic understanding of why I was there. I always gave those two papers to each new Dr I went to. It eventually helped.

good luck to you

geraldine
04-05-2013, 02:18 PM
Thank you, Mari, for your kind reply
Yesterday I went to see a General Physician. He was reasonably thorough, but still warned me that my traumatic childhood (40+ years ago) could be causing my symptoms. Apparently the fact that I am in the best place emotionally I have ever been but physically in the worst seems to be irrelevant. However, he did a physical exam (made no comment, although I have no reflexes in my left knee or my feet and have significant oedema) but he has ordered blood tests that seem to be mainly for inflammatory markers and thyroid function. No repeat ANA though. So we shall see. If they come back OK I don't know what I'll do next.
But I have some consolation in being on this board and knowing I am not alone, so I am genuinely grateful for your support. Gerladine

steve.b
04-05-2013, 07:38 PM
Geraldine, I presume you are in the middle of SA, (600km to see a specialist), when your doctor gets the results from the last round of tests.... talk to him about sending the results to a rheumatologist. I believe there is a federal grant available to people who have chronic ailments for travel expenses to medical practitioners. so if you do have lupus, you should be eligible for a subsidy to cover your travel costs. centrelink is the department that looks after the grant.

geraldine
04-06-2013, 12:00 AM
Thank you, Steve. It's a 600km round trip and PATS (patient assistance transport scheme) will provide 16 cents per km after you contribute $30 - if it's more than 100km, which helps a bit. Plus they pay toward accomodation. You need a GPs referral though. As I already have multiple permanent disabilities, I will look further into other federal funding as per your suggestion, thank you, and hope the GP will refer me to a rheumy even if this latest lot of bloods are negative. Cheers.

'Hypochondriacs Anonymous meeting cancelled - members believe they are too ill to attend