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Old 12-01-2012, 04:44 PM   #1
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Question Advise please

Please please help me. I need some advise. I am 22 years old and am thinking I might have lupus.

My mother has been diagnosed a couple months ago with lupus. I am curently waiting for my bloods to come back and I know thing should be clearer then but for time being I was wondering if you guys could help. These are my symptoms

Migraines I can first remember at 3.
Terrible growing pains started at 11
Sight light sesitivity since 12
Worst pain in my back which is chronic from 12
Pain in joints of hips, thumbs, big toes, shoulders been getting worse
Shooting pains start at shoulders and travel down arms
Pins and needles in random and transient places especially hands
Rash on my hair line red and raised
Excess sweating and over cold or over hot
I cant tan well become very patchy
Nearly all my bones click and this is painful and then tension releases and feels bit better
I get tremors in my legs when I stretch
My hands and lip have gone fully blue before
I have dizzy spells and have been rushed to hospital 3 times after blacking out unexplained
My eye sights goes blurry
Insomnia
Always tired and seem to need to nap by 4pm
Recurring cystitis with blood in urine
Heart palpitations had ecg and all clear fhew
Swollen hard lymphnodes in groin and armpits which have now now gone
Sound sensitivity

I have been to so many doctors who some have been lovely but have no ideas or been terrible like being on facebook during appointment.

Thank you in advance for any help or guidence you can give. Also if you have any thoughts on how I can help my mother too. Like is there anything that really helps. Christmas is a comming so a great rub or whatever. I would like to help her in anyway I can.

Loves and smiles.

Last edited by Smiled; 12-02-2012 at 11:55 AM.

 
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Old 12-02-2012, 04:01 PM   #2
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Re: Advise please

Smiled, hello and welcome! I'm sorry for the problems that bring you here. I'm just a patient, so please read in that light, OK? For starters, have you seen the "sticky posts" (permanent info posts) above the user threads?

I can't know whether you have lupus, but that said, I'm glad you had more tests done because it sounds possible to me. If it does turn out to be lupus, please know that many people do well in this era of ongoing checkups and modern meds.

I had some of the same problems you list. The one you mentioned that struck a huge chord is "growing pains", which is one of the "alternative criteria" in the sticky posts above, btw. Mine started at 13, which distinguished me from my classmates, I suppose. .

I had urinary problems, too: no blood but stones once in awhile, and pain, urgency and frequency. Also migraine-like headaches. (Yours starting so young, at age 3, sounds awful.) I also had photo-sensitive rashes that were proven lupus-specific via deep-punch biopsy. I've done MUCH better on medication but must avoid sun, alas.

To help your mom, you could visit your lending library & borrow books on lupus, and maybe introduce her to the site here? I hope you post again soon, also let us know how your labs turn out. Warm wishes to you & to your mom! Hugs, Vee

Last edited by VeeJ; 12-02-2012 at 04:08 PM. Reason: spelling

 
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Old 12-04-2012, 08:39 AM   #3
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Re: Advise please

Hello

I want to keep everyone infomed of whats going on and my progress incase anyone else has my symptoms. My ana blood tests and all other tests are in the normal range. I have appointment next with bone spiecalist. For now it does not look like autoimmune. When I know what it is I will let you know because it does seem simular. Hopefully my experience will hope others with their diagnosis. I wish all with lupus the best. I will carry on reading all your post so I can help my mum.
Good luck and big thankyou. Xxxx

 
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Old 12-04-2012, 10:30 AM   #4
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Re: Advise please

Smiled, I just want to say that it's possible but RARE to have lupus without a positive ANA. The main exception is where anti-Ro is positive despite ANA being negative: this is called "Ro-lupus". I've read it occurs in only 3% to 5% of all diagnosed lupus.

When my drs. suspected I fell into this tiny subgroup, they ran all the tests for the subtypes *simulatneously with* ANA, as opposed to waiting for a positive ANA to occur *before* running the subtypes (e.g., anti-Ro, anti-La, anti-ds-DNA, anti-RNP, etc.). They also performed multiple lupus band tests (deep-punch biopsy that's subjected to immunofluorescent stain tests).

I'm glad you touched base & hope you persist until you get help with your issues. And that's a good idea to keep reading here, for your mom's sake (she could, too, of course). So "see" you soon, so to speak. Sending warm wishes, Vee

 
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Old 12-11-2012, 04:02 PM   #5
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Re: Advise please

Hi smiled!

I was reading your post and see you have a lot of symptoms I had and was recently diagnosed with lupus myself.
I would definitely get in to see a rheumatologist and have them run some test,specifically antibody tests...you may have to be very diligent with your doctor as some don't listen very well..it took me ten years of many docs and diligence to find out finally what was wrong with me. I see your are young so if you find out early enough it can be treated and you should hopefully live a painless life! Good luck and hope you get answers!

Hugs
Angela
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Old 12-11-2012, 04:03 PM   #6
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Smile Re: Advise please

Hi smiled!

I was reading your post and see you have a lot of symptoms I had and was recently diagnosed with lupus myself.
I would definitely get in to see a rheumatologist and have them run some test,specifically antibody tests...you may have to be very diligent with your doctor as some don't listen very well..it took me ten years of many docs and diligence to find out finally what was wrong with me. I see your are young so if you find out early enough it can be treated and you should hopefully live a painless life! Good luck and hope you get answers!

Hugs
Angela
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