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Old 05-14-2007, 01:34 AM   #1
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How did they diagnose you?

Iím just thinking how many people here had the symptoms for years, like 10 years before being diagnosed, and is there anyone here that was diagnosed right away. Sometime I really lose my faith in doctors, my mother passed away, and they took too long ti figure out what was wrong, and still didnít totally figure it out in my eyes. Its funny because I bet there are people out there who have lupus and other things and suffer so bad and the doctors donít feel there is anything wrong with them. So please share how you were diagnosed and share all the different storeis, and how your doctor figured out what the problem was. Did you have to hit rock bottom? Did you get better right away ?

 
Old 05-15-2007, 09:45 AM   #2
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Re: How did they diagnose you?

Hi Miyu,

When I first read your post I thought about how many people would NOT respond because of the length their reply would take. Mine would go back 36 years to a point where I think I could honestly say I was having some symptoms of Lupus, my Neurologist thought it was MS and after being hospitalized with an episode and having an MRI done I was told I did not have MS. Lupus was also checked at that time and the ANA was negative so that was as far they went on that diagnosis, so instead I was told I had "Complicated Migraine" and that was end of story until things got very bad in 1997 and a diagnosis was finally made after seeing several doctors and I moved to a new area and saw a new Neurologist in the area. After 5 months when he did some bloodwork he referred me to a Rheumatologist who eventually diagnosed me 1 year later with SLE. That is my story in a very tight nutshell without going into detail of all the crazy things I was experiencing throughout.

Connie

 
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Old 05-15-2007, 12:55 PM   #3
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Re: How did they diagnose you?

Miyu, I'll give you the condensed version, too. Problems from childhood, more in adolescence, more in 20's & 30's. By early 40's, new recurring targetlike rashes. Saw suburban drs: GP's (many), dermies (4 or 5), rheumie (idjut), gastroenterologists (4), urologists (multiple). Only Dx was fibromyalgia (wrong!)

Took myself to teaching hospital rheumie. More bloodwork & urinalysis. He sent me to dermatopathologist ( = dermie who does own labwork), for another skin biopsy, *this time* including immunofluorescent stain tests. BINGO. On Plaquenil ever since & avoid sun.

In all fairness, I don't know at what pt. I could have been Dx'ed, had any of my drs. recognized the "subset" of lupus I have. Anyway, GOOD LUCK! Vee

 
Old 05-15-2007, 05:17 PM   #4
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Re: How did they diagnose you?

Hello there,

The more I read of the people who can't get a definite diagnosis of anything, the more I realise how very lucky I was in getting my diagnosis so very quickly.

It came after about 4 days of my being hospitalised. I was in a complete rigid state in a foetal position and the first diagnosis was JRA. Yes I did have that but they discovered that I also had SLE. What I find unbelievable though is this was over 30 years ago. Not a lot, and I do mean that, was known about SLE, but still I was diagnosed that quickly.

Take care.

goldenwings
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Old 05-16-2007, 01:39 PM   #5
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Re: How did they diagnose you?

Hi Miyu,
I was lucky. I had a good primary doctor who actually looked at my family history. My mother has lupus and rheumatoid arthritis, my brother has juvenile onset diabetes--autoimmune diseases. He said I had a higher preposition to autoimmune than the average person. I kept coming in because I kept getting canker sores in my mouth and only steroids would take them away. At my second or third visit he ran some tests, then more tests, and more tests. Final verdict was Hashimoto disease (autoimmune low thyroid) and put me on hormone replacement, two weeks later said I tested borderline positive for lupus, he referred me to a rheumy who diagnosed me with lupus. During all of this I was experiencing flares, still am, but nothing that required hospitalizations, just steroids. I did a lot of research on the internet and found that so many people struggle to get diagnosed or their doctors to believe them. My mom had lupus for at least 25 years before she was diagnosed. I am one of the lucky ones. I sent my doctor a thank you card, for being a good doctor and testing me so thoroughly and asking for all my symptoms. He appreciated it.

 
Old 05-16-2007, 04:04 PM   #6
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Re: How did they diagnose you?

I think it is awesome for some of you that were lucky enough to get a quick diagnosis. There are some doctors on the ball, some who aren't, some who don't encounter Lupus that often and some who just plain don't know enough about it to diagnose it, and then there are doctors like mine who doesn't want to give a diagnosis of SLE unless he is positively sure simply because of what it does to your insurance. When mine came ready to renew, I was dropped because of all the medical expense and drugs I had to take. The thing with Lupus is that only symptoms can be treated, and so often many tests need to be done to determine if the symptoms are caused by Lupus or something else. It mimicks everything and anything and there are just so many variables when dealing with it that it really isn't a wonder it takes so long for a diagnosis. When something happens and a doctor is able to absolutely rule everything else out it makes it much easier to diagnose. Some people are also very fortunate in that their symptoms make a diagnosis very easy where some of us have such odd and strange symptoms that a doctor will treat but it doesan't necessarily point to Lupus and this can go on and on, and unless we stay living in the same area and have the same doctor for years, symptoms can easily be missed as possible Lupus....just my feelings. I always told my husband that one day something would happen to me and nobody would know what was wrong with me or how to treat me. Funny that we who have it, even without a diagnosis, KNOW in our hearts that something is wrong with us, but it is just saying it enough times maybe that will eventually lead to our diagnosis.

Connie

 
Old 05-16-2007, 07:49 PM   #7
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Re: How did they diagnose you?

I have FM but decided to look at this site because my mom has RA and we have a lot of autoimmune disorders in my family.

I think part of the problem with getting DX. is because IF the ANA is not positive the doctors just look at the lab and don't look at the symptoms so many people have to wait for some time until antibodies appear even though they may feel like crap.

Hope that made sense LOL I know what I was trying to say sometimes my fibro fog makes it hard to get it typed out.

 
Old 05-17-2007, 12:35 AM   #8
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Re: How did they diagnose you?

You guys, that really scares me I was just watching a tv show on TLC of very rare disorders. Some things that nearly no one ever gets. But one they did was common (lupus) but she nearly died she was so bad and they kept misdiagnosing her. They even thought she had cancer, and aids. Her family was even starting to think about what life might have to be like without her. I guess her symptoms were a lot different then the typical lupus symptoms. When she finally got diagnosed, they told her she would have it for her life. she got so much better, and only has to watch for flair ups.

Why Iím mentioning this is because I think it happens to a lot of people. Thank you so much for telling me your story, because it seems like Lupus, isnít just genetic like most common disorder. Does it run in your family? Where you the first? Are you the only one in your family? I ask because it seems like if it was just in the family, it would be easy to diagnosed. But maybe it does run in the family, but the diagnoses are not correct.

Justme: I am the same, other then lupus, my family has all the same things as you. And I believe that I too have a high chance.
like VeeJ I hear lots of people are diagnosed with fibromyalgia. My mom had that, along with many other things, Arthritis, hyperthyroidism. Affects similar to type 2 diabetes, but never a diagnosis. (type 1 runs in our family) Chronic fatigue, sleep apnea. But they could never figure out why she retained so much water. They said it was because of a salt imbalance. I donít know what kind of test she went under, but she learned to live with whatever it was, over time, she just gave up. But we never had a family doctor, the one I did have as a small child was soo good and he retired, so my mom just bounced from medical clinic to medical clnic. And I did with her.
But for 10 years she cried out for doctors to help her. Her medications were not working. Then she got cancer and died 10 months later. In that 10 months we finally got a GP. But she didnít really know me.. but she had made it hard for me to keep coming with symptoms. I think when a doctor doesnít know what is wrong with you, you donít really want to keep going back and bugging them. i think also because my mom jsut died, she was thinking all they symptoms were in my head. I never really explained to her that like my mom I have been suffering with stuff for a long time, and no one seems to know. ( think I just came to her with it all too quickly) The strange thing is the only-other person I knew with fibromyalgia, also got cancer young and died. I wonder if fibromyalgia, wasnít the cause. After all for my mother it was only walk in that helped her.
So anywyas, my first family doctor became so stressed out, she left, so now I have a new one, and I debating on asking her about this. But I donít even know where to start. Doctors donít have alot of time to babble about everything. And if I just give her all my symptoms and she knows nothing about me, how can she know where to start? Oi..
Anyways, I wonder if after the pain of FINALLY getting diagnosed correctly, that it was worth it... Do you think, if you didnít get diagnosed, you would have died? I just donít knowÖ. Goldenwings: I see that for you it was a relief and life got easier right?

I bring this up because I have been really sick and my doctors in the past are giving me the same bull. Take more vitimins, come in with only a few symptoms at a time. Right now Iím good, but I have days, and they seem to be getting worse. I was just reading the warning signs of lupus, and it says if you have 4 symptoms, to talk to your doctor. And I have 11 of them. Started as a child, and have only gotten worse. So I might have something similar to Lupus, Iím honestly not sure, and Iím tired of going to the doctors, and from reading every post here, it seems horrendous. And I donít want to keep costing the medical felid so much money for tests, and being X rayed all the time also isnít good for you.

Sorry for the long spat...

 
Old 05-17-2007, 08:05 AM   #9
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Smile Re: How did they diagnose you?

Hello again miyu,

Just to say that I am the ony person in my family that has lupus.

Yes it was a relief for my parents to find out what was wrong with me but no life didn't get easier for me. I was extremely ill and it took 8 months hospitalisation to get me moving about and "with it" again. I went on to have lots and lot of compications caused by my SLE. Remember as I said I have had lupus for over 30 years and when I was diagnosed the medications were nothing like they are now. I was put on massive amounts of steroids and over the years have dropped them down. I am still take them and will never come off them. This is only me though. They actually saved my life then and I am thankful for them.

I have organ involvement. I have had heart attacks and heart surgery. This is just me though, others might not have these serious things going on, and other might have. Thing is though, what's to say though that I wouldn't have had these problems had I not had lupus ? One never knows.

If I was to be diagnosed now I am certain I would not have had the complications I have now. Over the years I have had lots of things happen and this I personally feel that some of them might have been prevented if there were the medications then that there are now. Now of course so many thing are known, so many treatments are out there and there is so much support with places like this to come to. Emotional support is paramount I think too.

One thing I want to set your mind at rest about is your question about dying. No you won't die because you are not diagnosed. There are usually 2 reasons for death with lupus and these are overwhelming infection and kidney failure. If you were unwell with this type of thing, you would hopefully be treated by your doctor whether you had lupus or not.

The thing is that symptoms can be different from person to person. One person can even have varied symptoms from time to time. Not all peope with SLE will get organ involvement either. It affects everyone differently. People with lupus have different symptoms and present with different problems. Because one person has one thing, it doesn't figure that the next person will have the same thing going on.

I have always fought hard to overcome what my SLE has thrown at me and at times it is very hard. Thing is though I will never give up fighting.

Take care

goldenwings
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Last edited by goldenwings; 05-21-2007 at 07:30 AM. Reason: misspelling

 
Old 05-17-2007, 02:53 PM   #10
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Re: How did they diagnose you?

Quote:
One thing I want to set your mind at rest about is your question about dying. No you won't die because you are not diagnosed. There are usually 2 reasons for death with lupus and these are overwhelming infection and kidney failure. If you were unwell with this type of thing, you would hopefully be treated by your doctor whether you had lupus or not.
well that is a very good thing. ^_^ thanks

 
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