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well, here I am and am not sure what to do next...(would love advice)

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Old 11-21-2003, 09:52 PM   #1
Join Date: Nov 2003
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shaloop HB User
Unhappy well, here I am and am not sure what to do next...(would love advice)


I'm a 28yo married mother of two preschoolers. For about 6 years (after marriage, before kids) I have had fatigue, nausea and bowel disorders. Over the past few years I have added joint pain in so far my r.hip, both knees, l.elbow and l.foot. and also what feels like bone pain in both arms and legs, achiness, headaches, numbness/tingling in hands and feet, burning and sore muscles upon exertion, difficulty taking a deep breath sometimes or shortness of breath, blurred vision in one eye which comes and goes, chest pains, extreme fatigue which seems to make my entire body heavy and makes it hard to even get out of bed sometimes, hairloss, unexplained bruises on my legs, and some of those symptoms come and go. Usually many symptoms come together, last awhile and then go away. Oh, also dark circles around my eyes and red circular scaly patches on my forearms, various rashes over the years on my forearms and fingers/hands, and a blushed appearance to my face (which usually accompanies other symptoms and then goes away.) Also seem to have cognitive impairment (very forgetful, can't reason things out too well lately, and just absentminded, difficulty concentrating and grasping concepts.)

I went to my GP in January when these symptoms were bad. She did a sed-rate which was slightly elevated. Then an ANA and RA which were both negative. Thyroid and diabetes tests were negative. CBC w/diff looked completely normal. X-ray of left foot, normal. Last month had MRI of brain (to rule out MS) and repeat sed-rate. MRI normal, sed-rate slightly elevated. She feels she's exhausted possibilities related to my symptoms. Suggested I try an anti-anxiety medication since I mention "stress" when I discuss my symptoms. (which I do have some stress right now and anxiety.) Wants me to try it for 2 months and if I'm no better, then wants to send me to an Internal Medicine Doctor.

Is this what you would do? Any other suggestions? I'm posting here as I KNOW something is wrong and I believe it is an immune-related disorder. 3 Aunts on my Dad's side have been diagnosed with Lupus, and one cousin who died from complications of Lupus, and my mother has been diagnosed with fibromyalgia though not completely sure that's what it is. We actually have similar symptoms. Any advice or thoughts would be greatly appreciated.


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Old 11-22-2003, 03:29 AM   #2
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Join Date: Oct 2003
Location: Australia
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*Pook* HB User
Re: well, here I am and am not sure what to do next...(would love advice)

Hi Shaloop - Welcome to the board! I'm sort of new to all of this but felt compelled to respond to your message. I'm still not 100% sure on blood tests (angelic if far more knowledgable on tests than me!) but a lot of your symptoms sound familiar (I have many symptoms of lupus but my blood tests have only been vaguely unusual so far) - I have Raynauds, muscular/joint fatigue, blurred vision, bouts of exhaustion, memory/planning/speech problems (come and go - brain fog!), tingling in head, fingers, low back ache, kidney ache, shortness of breath/dull chest ache - palpatations on change of position eg: turning over in bed/arrythmia, hair loss, skin rash (red nose/cheeks & lesions on scalp, cheeks (near & behind ear, inside eardrum), on glands in neck, back of legs, forearms. Also ear/balance problems, stomach bloating, gynae issues, fingernails curled over, prematurely greying hair (eek! I'm 31). But aside from that I'm feeling great! He He! A bit of humour to lighten it all up!
I have had a battle to get a diagnosis - it has taken four years - I have had the 'normal' test results too - and the offer of anti-depressants. I will say, the one doctor who doesn't believe my symptoms are stress related (he happens to be a psychiatrist!) gave me some diazepam to help me get to sleep (I have a few nights before a flare that I am wide awake until late). I found the muscle relaxing side of these beneficial - maybe (depending on what she has prescribed for you) you could give them a try to help you through the journey to diagnosis. It is very hard with children - luckily my boys are a bit older now (9 + 12) and understand that Mum's not just boring, she is sick sometimes and tired a lot - but just the same you feel bad feeling bad all of the time too.
Stress can trigger your symptoms too, but they aren't the cause of them - your symptoms don't sound anxiety related at all to me -
One question on your hip pain - have you noticed any swelling on the front of your thigh? I questioned my G.P. on my right sided hip pain and she told me it was lower back related - but I swell up just under my hip bone on the front of my thigh - it's kind of obvious too! Most of my other symptoms are left sided.
Did you mention family history to your doctor?
I have read lots of times that when your symptoms are bad with Lupus, your blood tests don't show much, then go out of whack when you are better again - weird huh!
I still haven't had a positive blood test, aside from an IG? (can't remember which) was elevated, a high estrogen level. I also had ruptured ovarian cysts approx five years ago and several episodes of them since.

Hang in there - I have had to see approx 8 different doctors (cardiologist (long time ago), neurologist x 2 (both conceited, arrogant pigs), physician (fine until he read notes from the three previous dr's), 3 different G.P's and a dermatologist (who didn't even bother to look at me properly, without make-up or using a lamp etc).
With your vision problems you might try the same path I am taking and see an eye specialist, I can't get an appointment until 5th December (not long now!) but hopefully he can help me with the pain I get in my eye.

Take care - don't let anyone tell you what you feel and that it's 'All in your head' or that you spend too much time on the internet 'diagnosing yourself' - usually people with anxiety related illness believe they are dying of cancer - not that they have Lupus.

Kindest Regards,

P.S. Sorry if this is written all out of order or hard to follow!! I get like that sometimes!

Old 11-22-2003, 05:53 AM   #3
Join Date: Dec 2002
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Sampy123 HB User
Re: well, here I am and am not sure what to do next...(would love advice)

You should be definitely tested for antiphospholipid antibody syndrome. These are many of the symptoms of it, I know, I've had every single one of them. I'* hold off on anti-anxiety meds until you rule this out first. The good news is, that if you test positive for this, it is easily treated with coumadin/warfarin and it's amazing how quickly the symptoms start to melt away. Anyway, Angelicbrat could tell you the exact tests you need for this, I'm sure she'll be checking in soon. take care. Shari

Last edited by Sampy123; 11-22-2003 at 05:54 AM.

Old 11-22-2003, 10:50 AM   #4
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Re: well, here I am and am not sure what to do next...(would love advice)

Hi shaloop and welcome to our home!

I think that you definitely fit the criteria for Lupus. The blood work can come and go.. change daily so your ANA may have been negative but can fluctuate to positive! And there are people out there that have a negative ANA and still have Lupus! Doctors depend so much on blood work, when actually a person can be diagnosed on symptoms and other "markers" that show up, like protein in the urine, xrays showing inflammation, certain odd things in blood work like ESR, lowered CRP, low blood lymphocytes etc. There are MANY things that can indicate Lupus. Have you been tested for Sjogren's Syndrome? Its a syndrome that involves dry eyes and dry mouth etc Every area that can become dry does! The test is simple, its a blot paper that is inserted into the eye and will measure moisture. This test is called a "Shirmers Blot test" and is extremely inexpensive but is worth its weight thats for sure! If it shows that you have Sjogren's, then you are one step closer to a diagnosis of Lupus! Your Optometrist, GP, Opthamologist or other related specialist can test you for that one!

Now, Sampy brought up a very good point about Antiphospholipid Syndrome. Her and I both have this. With me, it has caused eye problems involving swelling of the optic nerves. I also have tingling and weakness on the left side of my body and livedo reticulitis (a webbed pattern that looks purple on the extremities). I also get WICKED headaches and migraines. This syndrome causes the blood to get "sticky" and causes clots so its certainly worth getting tested for. The blood work is the anticardiolipin and the Lupus anticoagulant. I would strongly recommend that you get tested for this, because they try and pin MS on us when truly it is APS causing our problems!

Please try and explain to your GP that Lupus can exist without the positive blood work. I have posted the criteria of diagnosing Lupus in this forum. I typed out the American Medical Association criteria, as well as Dr. Hughes and his collegues criteria from St. Thomas Hospital in London England. He is the top Rheumatologist in the field! So you could always print that out and take it to your doctor.

You really need to see a Rheumatologist that specializes in Lupus patients, and also that could diagnose you on clinical symptoms. I hope this helps.. you really need to get those tests done for Antiphospholipid Syndrome, it could explain a lot of your symptoms! Your GP can test you for that. Talk to you soon and please ask questions if you want, that is what we are here for!


Old 11-22-2003, 11:54 AM   #5
Jida's Girl
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Jida's Girl HB User
Lightbulb Re: well, here I am and am not sure what to do next...(would love advice)

[FONT=Comic Sans MS][SIZE=4][COLOR=Indigo] Hi! I am new here, and just started reading posts, but I had to interject on this one. I hope the members don't mind!

You see, my sister has Lupus as well, and it took forever for her to get diagnosed. Her symptoms seemed so familiar, and yet she took the 'standard' tests for Lupus, which came out that she did NOT have it. But by the 3rd ER visit, I said to her, "I'm taking you out of Kiaser Perm, and giving you to real doctors!" Yes, I was mad, but she is my baby sister after all! (even though she was 22 at the time ) Well, the point is, my Lupus Doctor did what's call "the back door test" which, if any part of the test comes out positive, then they know which route to continue on with. Her Lupus is soooo different from mine, that we have to be very careful and understand why we may take the same meds for totally different reasons.

If I seem to be rambling, please forgive me, I just had treatment 2 days ago, but have been coherent 1 day...if you call this

Old 11-22-2003, 02:09 PM   #6
Join Date: Nov 2003
Posts: 9
shaloop HB User
Re: well, here I am and am not sure what to do next...(would love advice)

Thank you all for your replies. I posted this on the immune disorders board too. I've come away with the thought that I'm going to pass on the Internal Medicine doc and ask my GP for a referreal to a rheumatologist. How do you get them to do that without including a note that you're crazy? lol. I do want the new doc to take me seriously. Anyway, thanks for your thoughts. I also did some reading about antipho... (can't remember how to spell it) APS? and it really sounds like there might be something to that. I didn't even list all my symptoms and have started keeping a journal, but you all get the picture. lol. I'll keep you posted on what develops.



Old 11-22-2003, 05:13 PM   #7
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Re: well, here I am and am not sure what to do next...(would love advice)

You are totally right Jida's girl! No one will disagree with the fact that it can take years to properly get diagnosed (often it takes up to 10). It's so awful that people have to live miserable because doctors are afraid to diagnose patients that dont have the positive blood work. Under the "criteria to diagnose Lupus" in this forum I posted some alternative criteria that St. Thomas Hospital in the UK uses to diagnose their patients. The whole philopsophy there is "Listen to the patient, for they will TELL YOU the diagnosis". I wish all doctors operated like that. Its very hard to get diagnosed without the blood work- trust me I had to travel to the UK from Canada to get diagnosed.. and that was after 10 years of being quite sick!! Welcome to the board


Old 11-22-2003, 05:20 PM   #8
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Re: well, here I am and am not sure what to do next...(would love advice)

Hey shaloop

I wouldnt even worry about it. If your doctor does include a note that you are crazy AND this Rheumatologist doesn't do his/her own assessment of you and believes you are crazy then you dont want them involved in your care. Every doctor needs to do a proper assessment, that is the way it is! And if your doctor says your nuts.. where is his proof? Did you go and see a Psychiatrist and get THEM to diagnose you as crazy? Probably not.. because most doctors aren't brave enough to send us on to a shrink when they know darn well we ARE NOT crazy! They just tell us that- isnt that just awful. It can devistate people.. I have been told I was crazy, but I ended up leaving the country for a second opinion and guess what. I am not crazy Go and read my story.. its in this forum under "Lupus- my journey to a diagnosis". Take care


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