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Old 09-18-2008, 01:59 PM   #1
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A long road to walk

Hi I'm new to the community and would just like to tell a bit about what I've been going through.

For years I have been ill
Joint pains, "growing pains", stiff athritic joints, the most terrible fatigue, mouth ulcers, malar rash, cognitive decline, muscle twitches, intolerance to heat and recurrent lung problems (bronchitus, pneumonia) and many other symptoms.

I went to my doctor who felt I might have lupus due to the symptoms I was having and the rash I had across my face (which diagnosed on the spot as a malar rash). ON consultation with a rheumatologist he did a ANA test on my blood which came back positive, he then did the ENA tests but all of them came back normal, the only thing that was a bit elevated was the C-reactive proteins (which from what I've read is indicative of systemic inflammation)

Due to my blood results been normal for the ENA tests the doctor told me that I'm fine and that I do not have lupus and that the rheumatologist could not be bothered to see me. The thing is the diagnosis of lupus makes too much sense...it fits too well and I feel let down. I have continued to research lupus and have discovered a lot of interesting information that makes me feel that I need to pursue this.

Something that stood out for me is the fickle nature of these ENA tests. These tests that have been developed to detect autoimmune antibodies are not very sensitive...so if you have the antibodies but they are in low concentrations these tests may miss it. It also takes time to develop these antibodies. Another interesting aspect is that the results of these tests can actually vary from lab to lab.

With all this info I cannot just let this go, I have too many of the symptoms and it angers me that I am left untreated, undiagnosed and battling to live my life. I have so many things I want to do but I can't because I am either in too much pain or just to tired or both. Each morning I have to decide what tasks I really want to do for the day as the energy I have is limited. For example, if I want to do a bit of studying but I also need to hang the washing on the line, I need to decide which one I want to do because I don't have the energy to do both.

I am 29 years old yet I hobble around like I am 80.

Sorry about the long rant and rave. It's just incredible frustrating to know that something is very wrong but can't get a diagnosis.

I would really love to hear about other people's journey to getting a diagnosis and the difficulties they have had to face.

 
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Old 09-18-2008, 02:24 PM   #2
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Re: A long road to walk

Shellbelle, welcome! Your story is sadly familiar. I had trouble very early in life; then a full year of screaming "growing pains" in my early teens; then had new, chronic problems erupt each decade thereafter.

I was finally Dx'ed with lupus, positive for anti-Ro. My rashes (8+ years worth) were nonscarring targetlike, on arms & upper torso. i.e., this is a variant.

After seeing many local dermatologists, a rheumie, urologists, gastroenterologists, etc., I finally took myself to a teaching hospital rheumatologist. He did new bloodwork & urinalysis. Also---and this is the part that could perhaps help you---he sent me to a dermatopathologist* for one last deep-punch skin biopsy. ( * That's a dermatologist trained to do his own labwork.) He was the first to do more than squint at the microscope. He did *additional* immunofluorescent stain tests that proved the rash to be lupus-specific.

And if you have a lupus-specific rash, well, you have lupus to some degree (meaning Discoid, Subacute Cutaneous, or SLE ranging from mild to not). Which should be enough to get you treatment, is my thought. FYI, I've been helped hugely by Plaquenil & sun avoidance.

There was another thing that distinguished this rheumie from the other doctors I'd tried. In advance of my first appointment, his staff asked me to fax in a LIFETIME HISTORY, in my own words. I'd had so many of the signs & symptoms seen in people who eventually have lupus. (The "sticky post" at the top of the thread list about "Alternative Criteria" may ring a LOT of bells with you!)

But finding the doctor who can read so much meaning into your history is the trick. Who knows all the right tests & the optimal timing. So I hope you keep looking, to find that really good rheumie. And I hope you post more when you have time. Bye for now, with best wishes, Vee

 
Old 09-19-2008, 01:54 AM   #3
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Re: A long road to walk

Thanks Vee for sharing your story, I don't feel quite so alone.

When I have some more money I'm going to continue to pursue this, but for the mean time I just have to hold on, and try cope as best as I can. You seem like a very knowledgeable person (judging from all the other posts I've seen of yours) I would like to ask a question and perhaps you can give me some guidance. Is it possible to have kidney problems but have no protein show up in your urine...the reason i ask is because I have to go to the toilet a lot at night and often there is not very much in my bladder, although it feels like it. I also get a lot of pain on my right hand side under my ribs. I've read that this can be symptoms of kidney problems but when the doctor did the basic dipstick test there was no protein in my urine.

I just wondered if you had heard or read anywhere if it is possible to have no protein in the urine but still have kidney dysfunction.

 
Old 09-19-2008, 04:06 AM   #4
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Re: A long road to walk

Shellebelle, Obviously I'm just a patient... You could look for lupus books by *reputable* rheumie/authors. In the U.S., Dr. Daniel Wallace is one top writer, and another is Dr. Robert Lahita. In the U.K., a top choice is Dr. Graham Hughes. (I'm sorry, but I don't know who's available from your own country, per se.)

From reading, I *think* lupus-caused kidney problems are "silent". You could read more on this when you get your hands on something written by a recognized expert---or, because it's such an important question, discuss it with your doctor. And, of course there are kidney problems possible that are NOT caused by lupus...

But I think you also should consider that URINARY problems are possible. I had years of episodic urinary misery (urgency, frequency, pain, and blockages caused by grit = tiny stones). It was so bad that my urologist had me try several irritable bladder meds (didn't help) and also considered testing me for Interstitial Cystitis. (IC is also autoimmune; and it's seen in a small percent of lupus patients, but it can also exist "standalone", meaning without lupus).

But when I finally found the "good rheumie" who's helped me, he suspected "lupus cystitis", not IC. His theory was borne out when my problem faded to almost nothing when I started Plaquenil.

Just curious: do you notice some foods/beverages seem to trigger symptoms?

Also, UTI's could cause such urinary symptoms---but probably other bladder conditions could, also.

Have you discussed various possibilities with your main doctor? Or seen a urologist or a nephrologist? Good luck! Bye for now, Vee

 
Old 09-19-2008, 08:37 AM   #5
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Re: A long road to walk

Vee, I haven't noticed any correlations between what I eat and drink and my bladder problems but I will try to be more aware of that. Thanks for the advice on the books, I'm ordering a book by Dr. Lahita over the net.

Last edited by shellbelle29; 09-19-2008 at 08:57 AM.

 
Old 03-01-2009, 09:05 AM   #6
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Re: A long road to walk

Quote:
Originally Posted by shellbelle29 View Post
Hi I'm new to the community and would just like to tell a bit about what I've been going through.

For years I have been ill
Joint pains, "growing pains", stiff athritic joints, the most terrible fatigue, mouth ulcers, malar rash, cognitive decline, muscle twitches, intolerance to heat and recurrent lung problems (bronchitus, pneumonia) and many other symptoms.

I went to my doctor who felt I might have lupus due to the symptoms I was having and the rash I had across my face (which diagnosed on the spot as a malar rash). ON consultation with a rheumatologist he did a ANA test on my blood which came back positive, he then did the ENA tests but all of them came back normal, the only thing that was a bit elevated was the C-reactive proteins (which from what I've read is indicative of systemic inflammation)

Due to my blood results been normal for the ENA tests the doctor told me that I'm fine and that I do not have lupus and that the rheumatologist could not be bothered to see me. The thing is the diagnosis of lupus makes too much sense...it fits too well and I feel let down. I have continued to research lupus and have discovered a lot of interesting information that makes me feel that I need to pursue this.

Something that stood out for me is the fickle nature of these ENA tests. These tests that have been developed to detect autoimmune antibodies are not very sensitive...so if you have the antibodies but they are in low concentrations these tests may miss it. It also takes time to develop these antibodies. Another interesting aspect is that the results of these tests can actually vary from lab to lab.

With all this info I cannot just let this go, I have too many of the symptoms and it angers me that I am left untreated, undiagnosed and battling to live my life. I have so many things I want to do but I can't because I am either in too much pain or just to tired or both. Each morning I have to decide what tasks I really want to do for the day as the energy I have is limited. For example, if I want to do a bit of studying but I also need to hang the washing on the line, I need to decide which one I want to do because I don't have the energy to do both.

I am 29 years old yet I hobble around like I am 80.

Sorry about the long rant and rave. It's just incredible frustrating to know that something is very wrong but can't get a diagnosis.

I would really love to hear about other people's journey to getting a diagnosis and the difficulties they have had to face.
OMG. I just stumbled on this forum today. As I read your story, I feel like I am reading my own. I am so frustrated with doctors, with no relief to date. Even as I sit here typing the shooting pains going thru my elbows and wrists make me want to keep this message as short as possible.

How can I find help???

 
Old 03-02-2009, 02:36 PM   #7
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Re: A long road to walk

I know exactly what you are going through, my symptoms are almost identical to yours and I have lupus. The road to diagnosis for me was a long and miserable one. I'm not sure whether the worst part of trying to find my diagnosis was living with the extreme pain and debilitating symptoms while being told there was nothing wrong with me, or finally finding a doctor that listened to my symptoms but then told me they were all psychosomatic. Before finding my diagnosis I was told I had bipolar disorder and was put on very high doses of prozac and other antidepressants along with pain killers and a weekly appointment with a psychiatrist. Finally I took matters into my own hands and did research about lupus and found all my symptoms truly fit. I made an appointment with a new general practitioner and she led me to the most reknowned rheumatologist in the area. Within a month the bipolar diagnosis was retracted and I was diagnosed with lupus. It took nearly two years to get my diagnosis. If you feel that you have lupus I would highly suggest making an appointment with another doctor and probably another after that until you find someone who will listen to you and find out what's causing you all the problems that you have been having. Always remember there is no test that will tell whether or not you have lupus. Many tests that are usually indicative of lupus are found in people with no sickness or disease and in some cases people with lupus do not have test results that indicate the disease. I hope that this could be of some help to you and I wish you much luck

Last edited by *erica*; 03-02-2009 at 02:39 PM.

 
Old 03-03-2009, 12:04 AM   #8
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shellbelle29 HB User
Re: A long road to walk

I just wanted to give an update on my condition. It's been a while since last I chatted on this forum. I went to see a specialist about 6 months ago and after telling him my story, looking at the blood results I did have and reading through the research I had collected on Lupus, my doctor put me on plasmoquine (its pretty much the same as plaquinel) and I have been on it for about 5-6 months, and wow what a difference. My joint pains are very manageable and my exhuastion is not bad at all, I am almost living a normal life. I still have to take it easy and be careful not to over do it, but I am very thankful to my doctor who listened to me and decided to treat me on the basis of what I said I was going through and not just on the strenght of lab tests. If he hadn't taken done that I don't know where I would be today.

Thanks to him, I've successfully completed my degree and I am now doing my honours. So please, everyone don't give up hope, you will find someone who can help you just don't give up. Try to find a doctor who realises that blood tests are not the be all and end all, that they can vary from lab to lab and change from day to day.

Be strong, there is hope. Just perservere and believe in yourself, don't let anyone fob you off. You and your health are more important than that.

 
Old 03-03-2009, 06:11 AM   #9
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Re: A long road to walk

Hi everyone, I was diagnosed within four months, I was lucky, dont give up hope, if one doctor cant help, go to another. I was also put onto Plasmaquene, and there is a big defference, I can actually get out of bed in the mornings. Good luck, hope you find answers soon.

 
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