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Twinmama
04-09-2011, 10:50 AM
Hi, i am 30 years old, live in Hamilton, Ontario(Canada) and I have been diagnosed with Lupus just a month ago. so I'm still trying to cope with this new diagnoses. They told me that my Lupus is related to Ulcerative Colitis which I have been living with for 9 years now.
A month ago I had absolutely no idea what Lupus was, and today....well I am learning new things every day.
What puzzles me now is that my family DR. didn't figure out what was going on with me and took her months to send me to Rheumatologist. I told her all my symptoms and it was as if I copied it from a book or a website(now I know it). Here is a list of symptoms I kept complaining about:
Arthritis pain ( very bad) which they tested me for rheumatoid arthritis
my whole body was in pain (muscles, joints, skin, scalp, face)
very bad headaches 24/7 (took painkillers every 4 hours for 2 months straight which helped only sometimes)
chest pain
shortness of breath
low grade temperatures
rash on my eyelids
EXTREME fatigue
and more minor symptoms like sensitivity to light etc.
and I didn't mention hair loss and ulcers in my mouth and other area because I didn't know it could be related.
I did tell her I was more irritated and depressed, etc.(which they are still not treading me for)
I had pneumonia and sinus infection pretty bad and no antibiotics worked...my doctor was confused, and didn't even mention Lupus..she had no idea so finally sent me to Rheumatologist. he sent me for a bunch of blood tests and I had an answer.

I'm happy that I didn't find out about my lupus like some other people on this website. With hospitalization due to heart-attacks etc.
It's heartbreaking reading other people's stories.

craftkeeper
04-09-2011, 11:52 AM
Hi twinmama, glad you found this board.. I am newly diagnosed In Feb also and everyone here has been so helpful to me. Like you i find myself wondering just how long i have been this way without the Dx.
There are alot of people here that are alot worse then i am though and they always pitch in to help lift you up when your down or to answer your questions.. Welcome

steve.b
04-09-2011, 09:42 PM
hi twinmama, there are people here from all over the world. also almost every age is covered.
welcom. look around at the other threads, your symptoms all sound lupus related.

Colleenc
04-09-2011, 09:56 PM
Welcome twinmama!!
I to am from Canada!! Just a small town northeast of Toronto, outside of Peterborough called Keene!!
I hope you find this board useful, I certainly did!!

Colleen

tgal
04-10-2011, 06:59 AM
Hi Twinmam! Welcome to whl!

OK, I wrote out a very long post and apparently hit a button that took it all away! (it was the third time third time this morning)! With that said I am just going to welcome you and I, or someone else, with discuss the possible reason for your lack of diagnosis later in the day!

Once again, welcome to WHL! We are glad to have you as part of our family!

Saysusie
04-10-2011, 12:13 PM
Hi Twinmam! Welcome to whl!

OK, I wrote out a very long post and apparently hit a button that took it all away! (it was the third time third time this morning)! With that said I am just going to welcome you and I, or someone else, with discuss the possible reason for your lack of diagnosis later in the day!

Once again, welcome to WHL! We are glad to have you as part of our family!

Tgal; You are so funny :-) I know you must be frustrated when that happens because it happens to me more times than I care to mention. And it only seems to happen when I feel as if I've written something very profound and wise (lol). Then, I hit a button and "poof", it's all gone. Of course, due to brain fog, I am completely unable to remember anything that I had just written! So, we are in the same club!

Peace and Blessings
Namaste
Saysusie

Saysusie
04-10-2011, 12:34 PM
Twinmama;
Welcome to our family :-) I just wanted to respond to your question about why it took so long to get a diagnosis. In the scheme of things, you were, actually, diagnosed rather quickly.
Diagnosing lupus is difficult and can take months to years for some. This is partly because the signs and symptoms vary greatly from person to person; The signs and symptoms of lupus may change over time, and the signs and symptoms tend to overlap with those of many other disorders. For these reasons, doctors may not initially consider lupus until your signs and symptoms become more obvious (i.e.-your symptoms worsen or you develop more symptoms). Even then, lupus can still be challenging to diagnose because nearly all people with lupus experience fluctuations in disease activity (at times the disease may become severe and at other times subside completely).
The American College of Rheumatology (ACR) has developed clinical and laboratory criteria to help doctors diagnose and classify lupus. If you have 4 of the 11 criteria at one time (or individually over time), you probably have lupus. Your doctor may also consider the diagnosis of lupus even if you have fewer than four of these signs and symptoms. The eleven criteria can be found in a sticky in "Newly Diagnosed"
Your doctor may also order blood and urine tests to determine if you have Lupus. Some of those tests include: CBC (Complete Blood Count), ESR (Erythocite Sedimentation Rate) - determines the rate at which red blood cells settle to the bottom of a tube in an hour. A faster than normal rate may indicate a systemic disease, such as lupus; Kidney and Liver Assessment; Urinalysis (to determine if there is protein leakage in the urine); ANA (Anti-nuclear antibodies) - to determine if these antibodies are present and, if so, is the cause due to Lupus; ECG (Electrocardiogram); Syphilis - (Active Lupus will generally show as a false positive for Syphilis); Chest X-ray (to determine if there is fluid around the lungs or the heart).
Doctors, however, should base the diagnosis of systemic lupus first upon on the patient's clinical history, symptoms presented, and physical examination. After this, if Lupus is suspected, then the diagnosis should be further confirmed with laboratory tests (as mentioned above) and the use of the ACR criteria. All of this, as earlier stated, can take months to years, especially in light of the fact that symptoms come and go, mimic other illnesses, and change frequently!
I hope that you found this helpful :-)

Peace and Blessings
Namaste
Saysusie

tgal
04-10-2011, 02:25 PM
Tgal; You are so funny :-) I know you must be frustrated when that happens because it happens to me more times than I care to mention. And it only seems to happen when I feel as if I've written something very profound and wise (lol). Then, I hit a button and "poof", it's all gone. Of course, due to brain fog, I am completely unable to remember anything that I had just written! So, we are in the same club!

Peace and Blessings
Namaste
Saysusie

That is EXACTLY how I feel! LOL At least I am in a good club!

Yes, bad, bad brain fog today. Gonna make the posts short and to the point!

tgal
04-10-2011, 02:26 PM
@ Susie- THAT is basically what I said! LOL Glad you did it for me LOLOL

kim,l
04-10-2011, 05:12 PM
hi twinmama welcome to our whl family look forward to getting to know you we are all here for you to support you ain anyway we can hugs kim l

Peridot20_Gem
04-11-2011, 06:00 AM
Hi, i am 30 years old, live in Hamilton, Ontario(Canada) and I have been diagnosed with Lupus just a month ago. so I'm still trying to cope with this new diagnoses. They told me that my Lupus is related to Ulcerative Colitis which I have been living with for 9 years now.
A month ago I had absolutely no idea what Lupus was, and today....well I am learning new things every day.
What puzzles me now is that my family DR. didn't figure out what was going on with me and took her months to send me to Rheumatologist. I told her all my symptoms and it was as if I copied it from a book or a website(now I know it). Here is a list of symptoms I kept complaining about:
Arthritis pain ( very bad) which they tested me for rheumatoid arthritis
my whole body was in pain (muscles, joints, skin, scalp, face)
very bad headaches 24/7 (took painkillers every 4 hours for 2 months straight which helped only sometimes)
chest pain
shortness of breath
low grade temperatures
rash on my eyelids
EXTREME fatigue
and more minor symptoms like sensitivity to light etc.
and I didn't mention hair loss and ulcers in my mouth and other area because I didn't know it could be related.
I did tell her I was more irritated and depressed, etc.(which they are still not treading me for)
I had pneumonia and sinus infection pretty bad and no antibiotics worked...my doctor was confused, and didn't even mention Lupus..she had no idea so finally sent me to Rheumatologist. he sent me for a bunch of blood tests and I had an answer.

I'm happy that I didn't find out about my lupus like some other people on this website. With hospitalization due to heart-attacks etc.
It's heartbreaking reading other people's stories.Hello Twinmama,

Welcome to our large family of the WHL and it's lovely to have you with us and to share your experiences.

I'm so pleased your learning all about Lupus because it can be a shock to the system and i hope the threads are helping in so many ways.

I was diagnosed 3yrs ago but was actually born with it and over the years had alot go on and now with the Lupus trying to cope as well but like yourself i have swelling of the joints and they go inflammed/headaches/chest pain & lung pain [Lupus can cause the muscles of the lungs to swell and i'm on 3 different inhaler's a day]freezing cold of the raynauds/extreme fatigue/ foggy head/ hair loss/ manic depression & that's the worst symptom for causing it to trigger.

All of us on the site suffer like your doing, alot master it so well and some not so good but it's all down to the person themselves.

~Hugs Terri~ xxx

zoe5710
04-13-2011, 02:48 PM
Hello! I just found this forum and wanted to say hi because I live in Toronto and am just about the same age (29 for a couple more months!) I'm going through the process of getting a diagnosis. My symptoms haven't been as clear-cut as yours and it's taking a long time to get a diagnosis. Also, I don't know what it's like in Hamilton, but I've had long wait times to see specialists and get tests done. I'm getting most of my medical care through Sunnybrook Hospital, but there is an autoimmune disease centre at Mt. Sinai so when I'm certain that I have lupus (or scleroderma, which is also a possibility though I have no skin involvement yet) I may ask for a referral there. I just think that doctors who do nothing but treat lupus/scleroderma/vasculitis will be able to treat it more effectively.

Anyway, it's a really frustrating and depressing time. I really sympathize with you. From your screen name, I'm guessing that you have twins?! I have 3 children, including a baby, and I know how hard it is to care for them when I'm not feeling well. I also worry constantly now about what will happen if I'm not here for them, either because I'm just ill or hospitalized or if I were to die. I know that lupus is highly treatable now so I try not to get too anxious, but of course my mind goes there sometimes. And it's especially hard to think about mortality when you have young children counting on you.

Good luck! I hope you'll find lots of useful information here, and feel free to contact me if you ever want to chat.

Zoe

tgal
04-13-2011, 03:02 PM
Hi Zoe! Welcome to WHL! Don't feel alone about the long diagnosis. Many people go for months and even years trying to get a diagnosis. It is frustrating when you know SOMETHING is wrong but you can't get anyone to give you a firm answer!

We are here while you are waiting and hopefully we can be of some help!

Peridot20_Gem
04-20-2011, 08:09 AM
Hi Twinmama,

How are you doing in yourself? and i do hope it's a pain free day for you, keep us updated please.

Terri xxx

bunny28
04-20-2011, 03:54 PM
Hi twinmama!

I am also a Canadian living near our Nation's capitol. I was diagnosed in Feb and am in my mid 30's/ I want to recommend a book for you. I am not all the way through it but it has answered a lot of my questions. It is called The Lupus Book by Dr. Wallace. There is also another book/Despite LUpus that has been recommended to me about living well with lupus but I haven't read that one yet. From what I understand there are local chapters of Lupus organizations all over the province. Check the Lupus Ontario or Canada or Ontario Lupus Federation sites for details. I have taken some power back and will be participating in the Walk for Lupus in May in my community. The idea of fundraising for research for something that affects me and may affect my children or their children helped me to feel empowered against this "new" force in my life. Best wishes and take care. (I have yet to connect with my local groups either but am hoping I will meet some other Lupus patients at the walk.)

Cheers

Bunny

Twinmama
04-20-2011, 06:53 PM
Thanks bunny, I will look into that book! That is if I won't fall asleep before I finish the first page. I tend to do that with any book. lol
I found support group in my area. they have a group meeting tin may with a doctor speaking. I wish there would be more meetings...support group type .
I would love to be a part of Walk for Lupus. I tried to find Walk on Lupus in my area, but no luck. where did you find out about it? will it take place in Ottawa?
Thanks.
twinmama

Twinmama
04-20-2011, 07:00 PM
Hi Twinmama,

How are you doing in yourself? and i do hope it's a pain free day for you, keep us updated please.

Terri xxx

Doing OK. went for more bloodtests . have red spots all over my body. not rash. just spots. have no idea what it is? Dr. is sending me for MRI cause of my migraines. no meds work whn I get them, and I get them quite a lot.
my body pains(muscle and joints) are pretty much gone thank god.of course there is some pain at least once a day, but it's nothing compare to before the meds! :)
How are you feeling?

Colleenc
04-20-2011, 07:52 PM
Welcome Zoe,
Just wanted to say hi!!
You are in good hands at Sunnybrook!!! I live just outside of Peterborough, ON and my cardiologist, hematologist and rheumatologist are at Sunnybrook (because there are very few docs in PTBO that know anything about Lupus and APS that I have been struggling with for 4 years now). If you can get a referral to Rheumatology at Sunnybrook (I highly recommend Dr Dwosh or Dr. Cohen) they have been absolute life savers for me!! I also have 3 kids, although mine are 14, 12 and 11. Hang in there I know sometimes the worry can be insane. You have many more years of life ahead of you, be thankful for the days your well!!!

Colleen

Twinmama
04-21-2011, 05:49 AM
Doing OK. went for more bloodtests . have red spots all over my body. not rash. just spots. have no idea what it is? Dr. is sending me for MRI cause of my migraines. no meds work whn I get them, and I get them quite a lot.
my body pains(muscle and joints) are pretty much gone thank god.of course there is some pain at least once a day, but it's nothing compare to before the meds! :)
How are you feeling?

I lied ! The pain is NOT gone! Was just having an ok day yesterday :(

Peridot20_Gem
04-21-2011, 09:43 AM
Doing OK. went for more bloodtests . have red spots all over my body. not rash. just spots. have no idea what it is? Dr. is sending me for MRI cause of my migraines. no meds work whn I get them, and I get them quite a lot.
my body pains(muscle and joints) are pretty much gone thank god.of course there is some pain at least once a day, but it's nothing compare to before the meds! :)
How are you feeling?Well lets say you've had a less pain free day and call that one a boost.lol Blood tests just never end but i've never personally had just a rash of red spots over my body and hopefully they should find out taking the bloods why the rash is in your system.

Those migraines which you call them are so severe it's terrible, i've took painkillers the lot and nothing removes them, so i've found if i take a 5mg valium every 2 days it seems to keep me at a carm level plus my head but banging it friday as coursed me some pain, i do hope nothing severe comes from the MRI. I have one every year to check my skull with my seizures and check how my brains doing as i'm half brain damaged on the right side through medication and seizures.

Well itis nice to hear you woke with your joints feeling abit better, i woke this morning both hands and finger joints swollen, muscle spasms as perusual, they was easing off with the plaquenil i take but have started coming back.

Well look after yourself. xxx

bunny28
04-21-2011, 03:14 PM
Thanks bunny, I will look into that book! That is if I won't fall asleep before I finish the first page. I tend to do that with any book. lol
I found support group in my area. they have a group meeting tin may with a doctor speaking. I wish there would be more meetings...support group type .
I would love to be a part of Walk for Lupus. I tried to find Walk on Lupus in my area, but no luck. where did you find out about it? will it take place in Ottawa?
Thanks.
twinmama

Check out www.walkforlupus.ca That is the Lupus Canada walk site. Click take the next step and then you will be able to find walks in different locations.
I hear you about the book but at least this one even says it isn't supposed to be read cover to cover! lol!

Colleen - I have been to Keene and travel often to your area (in-laws). It sounds common for "locals" to head into downtown Toronto for specific health concerns. In that respect it is great to be "near" a big city as so many of the specialists are in that area.

bunny28
04-21-2011, 03:16 PM
I meant to tell you your headaches sound a lot like mine and were one of the worst symptoms I had at diagnosis. I still get them more than the average person but I am on a combination of migrained meds and plaquinil that seem to have decreased their frequency and severity most days anyway. Hand in there...it is a process for sure.

Peridot20_Gem
04-29-2011, 01:38 AM
Hi Twinmama,

How did your test's go?? and i hope your days a less pain free one for you also.

~Hugs Terri~ xxx