Results from my lupus test were "borderline positive".

[Madrone]

I have to start seeing a rheumatologist.

Anyone have / know someone who has lupus that wants to share their story?

Anyone have any information they'd like to share on rheumatologists?

[malta blue]

1. f*ck. Damn.......

I'm sorry Madrone :hug:

I was diagnosed with fibromyalgia in the fall. I don't have any tips or techniques....just a :hug:.

I'm sure you will find a good rheumatologist.

[UndertheOcean]

2. The new medicine that came out for fib recently , forgot its name

does it really help ?

My mother was diagonised with it after years of pain.

[malta blue]

5. I have not tried it - IIRC it's called Lyrica....

I am hesitant to try it at this point. I would rather more testing be done on it.

[CherokeeDem]

22. I have Fibro and...

I am currently taking Lyrica. I cannot begin to tell you the difference. I have so much more energy and my thought processes seem a bit more lucid. I had only one side effect, gained 8 pounds in a very short period of time, weight gain is a side effect, but I did get that off fairly quickly (now if I could get the other 40 lbs off so fast!). My doctor gradually raised me to the dose I take to decrease the side effects. I think if you trust your doctor, then it is worth a try. Only thing in 11 years that has really impacted my health in a positive way. Fibro is a bitch.

edited for spelling.

[Madrone]

3. Fibromyalgia is a bitch I'm familiar with.

;) I've got her too! Been diagnosed with that for between 5 and 8 years now. I've never been to a rheumatologist though. Apparently the one I'm being referred to is an AMAZING one. A lady I work with sees him for her arthritis. SUCK part is that it's an hour drive each way to go ... YAY for republican oil men in the white house! Pfffffffftttt.

[malta blue]

7. why is it that we all end up with these funky ailments....

I mean, 100 years ago - did women (as 9 of 10 fibro sufferers) just "deal with it" or is this something new?


:tinfoilhat:

[Madrone]

8. I dunno ...

I tend to lean toward the idea that it IS new - and it's related to environment. Whether it's chemicals in food, in the air, whatever ... SOMETHING is definitely going on.

[malta blue]

11. that's what I think too

:tinfoilhat::tinfoilhat:

I bet we're not too far off....

I hope you get the best treatment out there - and that drive - grab yourself a great audio book and make the most of the time.

[havocmom]

27. That and the fact that women live longer now than they did 100 years ago

[fudge stripe cookays]

30. Look no further than Excitotoxins

I'm firmly of the belief that Mr. Rumsfeld and his buddies who got Nutrasweet approved, when it was not supposed to be, have sentenced our generation to health problems our ancestors rarely had to deal with.

http://www.dorway.com/92symptomsfotocopy.html (symptoms of aspartame poisoning)
http://www.dorway.com/upipart1.html (check out the Burson Marsteller references. Figures)
http://www.truthorfiction.com/rumors/n/nutrasweet.htm (says it's unfounded, but I disagree)
http://www.aspartame.com/
http://members.aol.com/budzowski/budzowski/excitoto.htm
http://en.wikipedia.org/wiki/Excitotoxin
http://www.dr-jo-md.com/excitotoxins.html
http://www.amazon.com/Excitotoxins-Taste-Russell-L-Blaylock/dp/0929173252

FOR GOD'S SAKE! GET OFF DIET SODA!!!

MSG is also a neurotoxin, I'm finding. So if you eat any type of canned soups or Chinese food, chances are you've ingested bunches of it.

[malta blue]

31. well you just scared the bejeebus out of me....

I could live on chinese food, drink diet soda...Little MB drinks diet soda too (on the rare occasions she gets a soda). I use Splenda as a sweetener now, but I was using Nutrasweet all the time....

:scared::scared:

[fudge stripe cookays]

36. Splenda is actually just as bad.

I read that somewhere else. They try to make us believe that it tastes like sugar because it's made from sugar, but it's not. It's also got oodles of chemicals in it that are bad for us. It's a neurotoxin.

I've switched to flavored waters like Perrier when I have to have the carbonation, but this stuff is poison.

Example? Who is getting the majority of diseases like lupus, MS, and fibromyalgia? Young women in their 30s and 40s. Who was drinking the majority of diet sodas since they got widely available in the 80s in various flavors? Young women in high school and college. Coincidence? I don't think so....

[malta blue]

48. The arguement sounds pretty solid to me...

problem is I am a slow learner :dunce:

[TZ]

4. My sister has Lupus was dx'ed 20 years ago

She was lucky and was in a NIH study for a long time so had an excellent rhumatologist. Lupus can be managed with medication but finding the right dose can be a bear. Watch out for scammers though. Because Lupus has flares and therefore can make one asymptomatic a lot of people try to sell Lupus patients on "cures".
PM me if you want more information..oh and perhaps finding a local chapter of a Lupus support group would be helpful
Good news is there is ALOT of research going on right now and now and more effective medications for Lupus (I actually am doing some research in this area). But look up and research prednisone as that is the most likely course of treatment.:hi:
Good luck!

[Madrone]

6. I am totally NOT down with prednisone...

I mean - unless there's no other option and NOT taking it is definitely worse than taking it. Otherwise I'll avoid it. I know there's no "cure" - so I'll not be easily taken in by that. I also hope (if I do, in fact have this) that I can avoid continual medication. Having to take drugs daily rubs me ENTIRELY the wrong way.

[TZ]

9. It really depends on how miserable the disease is making you

Ie how painful the arthritis is..Some people (like my sister) CANNOT function without prednisone. Thats the problem with Lupus, prednisone is nasty but not taking it can be much worse for some. Oh yes, and you will have to keep a watch on kidney function as that is the most common dangerous complication..

[fudge stripe cookays]

28. Aww sweetie, I'm so sorry.

I don't have lupus, I have MS. But they have that whole "immune system" linkage thing. And are very similar. Only with MS it's the central nervous system, and with lupus it's connective tissue.

Speaking personally, yes it sucks, but the steroids aren't the end of everything. IV steroids when you're first diagnosed can wrestle the major symptoms into submission until they can put you on a different type of drug therapy (in my case, Betaseron).

My ankles swelled up like a mofo so that I could only wear thong sandals for about 2 weeks, and even though I'm practically narcoleptic and sleep all the time, I was waking up at 3 in the morning. But it was OK because I'd been laid off, and I got lots of research done on my book.

I was SO freaked out at the thought of giving myself shots every other day. reprehensor will tell you that I broke down the first time, just bawling. But then it became a fact of life, and now I'm remarkably casual about it. I'm not crazy about the immune system being weakened or out of commission (putting me at risk of other stuff), but I like having my life back. The Betaseron has kept me (relatively) healthy for 3 years.

If you need to talk, just PM. My experience isn't QUITE the same, but the diseases are very similar, so I can offer you some support. Keep your chin up little buckaroo.

:hug:

[Madrone]

32. Thanks for the support.

I'll probably find out sometime this week when I have an appt with a rheumatologist. I got sent off to have an MRI a few years ago - to "rule out" MS. Because of that I'm a little familiar with it as I did some research. I think of the two I'd rather have the lupus! Sorry you're dealing with that. :hug:

I will be 100% unsurprised if I DO have lupus. It really seems to fit - and it was one of the first things I was tested for 10 years ago when I first crashed REALLY hard and my body went all wonky. It was negative then. Borderline positive means maybe nothing, maybe lupus, maybe one of the myriad of disorders similar to lupus.

Thanks for bringing up the sweetener thing above! I've not been a big soda drinker for over a decade, and when I did drink it I drank sugared soda. Of course - I have a HUGE stockpile of diet sodas in the house now that I bought when I had a teenager living here (meth addict with bad teeth and a WICKED soda addiction. I switched her off onto diet to help save her teeth) and that she didn't drink before she left late November. I've been drinking them from time to time - a little here and there. I don't notice any difference when I do though. Not that I'm saying I think it's healthy - I certainly do not. Besides coffee, I mainly drink water though.

I think the WORST part of all this (and actually, this hasn't started with the possible diagnosis - it just becomes something I can talk about now that I may have the DX and not get the crap I'd get just being normal and "lazy") is having to do EVERYTHING. I live alone, I have a full time+ job, I have a household of animals that need to be taken care of - a few with rather severe health issues of their own, the house is always a pit, the yard looks like crap... I just want to cry from being overwhelmed most of the time. Not having ANY help really sucks. :( As a result, not much ever gets done - and that's a lot of emotional stress too. I hate it.

Anyway.... /whine

:)

[fudge stripe cookays]

38. Something you might want to have your doc check into...

My new neurologist up here in Wisconsin is very into revolutionary new treatments.

He put me on something called Provigil that is normally used to treat narcolepsy. But it helps with regulating exhaustion levels and keeping energy up. Mad, this stuff is AMAZING. I call them my happy pills.

For the last 3 years, it had been impossible for me even to go the grocery store for longer than half an hour or run a bunch of errands on a Saturday...I'd just get too tired. Forget house cleaning. I consider it a miracle drug. I have my life back.

And as for MS vs. lupus, I guess it's a toss-up. So far, I haven't had to deal with pain. I think if I did, it would be far worse. I tell people...I can still see, I'm not in a wheelchair (yet), and I'm not wearing Depends. Don't feel bad for me. :D

I've definitely developed a very "There for the grace of God go I" attitude, and always try to help folks in the grocery store or whatever if it looks like they can't reach something because of a cane or a wheelchair or something. It's very humbling, what we're dealing with.

Take care of yourself, sweetie.

[Chan790]

10. My mother was borderline positive...

it turns out she actually has Hashimoto disease. Of course, they treated her for Lupus for 4 years before they figured out why she showed exactly zero response to treatment.

Some things I learned from the experience...don't be afraid to ask questions, even those that challenge the doctors if what they're saying doesn't make sense to you. You deserve to understand exactly what is going on and what treatment decisions are being made. Auto-immune disease is a very rapidly advancing field of medicine so become a student of your disease because you are the best advocate for your health and an informed patient is an empowered patient. You have one area of medicine to be an expert on, your doctor has many...it's not uncommon for patients to be more up-to-date on the cutting-edge of treatment options, which brings us back to ask questions.

[Eurobabe]

35. I have hashis too

I urge EVERYONE who has been dx'd with an auto-immune disease to HAVE YOUR THYROID LEVELS checked. It could be thyroid-related and NOT what they dx'd you for. Thyroid is master gland of the endocrine system and is implicated in: fibromyalgia, vitiligo, etc. Why doctors don't explore this deeper when a patient presents with similar symptoms is beyond me. :shrug:

Fibro and thyroid connection here:
http://www.drlowe.com/

Vitiligo and thyroid:
http://thyroid.about.com/b/2007/04/10/researchers-find-genetic-connection-between-vitiligo-thyroid-disease-and-other-autoimmune-diseases.htm

[siligut]

40. I agree, thyroid problems can cause all sorts of havoc.

Make sure that free T3 levels are checked. Women can have good TSH levels and still be hypothyroid if they are not converting T4 into T3.

I have seen a rise in autoimmune disorders and I believe it is due to the environment and processed food, as well as unidentified food allergies.

I know that we are being told that hormones from our medications are the reason that there are hormones in our water. That is not the whole truth. Some pesticides work by not allowing said pests to mature; this is accomplished by dousing them with hormone-like chemicals. Well, those hormone-like chemicals act in our bodies too. Recently, there has been news that Organochlorines in plastic are acting like estrogen. Increased xenoestrogens mean we see more breast cancer, increased obesity, polycystic ovarian disease and autoimmune diseases.

To the OP. Go organic, especially with dairy and products high in oils and fats, that is where the estrogen like substances are stored. Air out anything that is pliable plastic, before you bring it into your home. I am still trying to think of what I can use as a shower curtain liner instead of plastic, next time I have to buy. Do not microwave your food in plastic.

Eat active culture yogurt or take probiotics; keep your GI system healthy. Consider eating just organic brown rice with non-nightshade vegetables and yogurt for a week or longer. Then adding other healthy foods back slowly. Undiagnosed food allergies cause a myriad of problems.

I am at least glad that western medicine is finally admitting to diseases like fibromyalgia, just a few years ago, many docs treated these suffering people like they were hypochondriacs.

Find a rheumatologist who knows their stuff and listens to you. It is a complicated field, but there are some good docs out there. Also consider a naturopathic practitioner. Good luck.

[Eurobabe]

50. I've been off my yogurt and muesli all week

since I flew back to the US. I feel like a SLUG!! Yogurt is so good for you (unless you have a dairy allergy) :(

Yes, to OP, don't go by TSH, have free T3 and free T4 numbers run, as well as the test for antibodies against thyroid.

[fight4my3sons]

12. I have APS

some people with APS (antiphospholipid antibody syndrome) also have Lupus. I had to go to a rhuemy for my APS, they ran a bunch of tests to see if I needed to be on anticoagulants all the the time. I was told not until I have a clotting event, so we are basically waiting until I have a stroke or an embolism or something like that, but I am to take an aspirin daily. I had to take anticoagulants and an aspirin while pregnant to prevent miscarriage. I had two and that is how I was diagnosed in the first place. Have you searched online for a support group? I found a wonderful support group on Yahoo groups.

[Elidor]

13. I'm sorry

I don't know much about it, but my warmest wishes to you. I hope the diagnosis is wrong, or that the condition is at least easily treatable. May you have your full health back as soon as possible. We'll be thinking of you.

:hug:

Can you talk about your symptoms? I understand if you don't want to. I've had some strange disease for some time that I can't figure out, and sometimes I've wondered if it might be something related to Lupus. And when this hits me, steroids and anti-histamines are the only things that help me cope.

[Madrone]

15. I will absolutely talk about it -

But it's hard to nail down as it goes back a little more than 10 years- and things that happened 10 years ago don't happen anymore, and things that happen now haven't happened before ... etc.

I'll just focus on the NOW because that alone is a long enough list to digest, and they are things that are fresher in my mind.

1. My hair. It breaks off (not all of it, I don't look bald) an inch from my scalp so I have all these odd rogue hairs sticking up all over the place.

2. Chest pain. I get horrible, excruciating chest pains that end up in anxiety/panic attacks. If I take a narcotic when I feel the chest tightening the pain never gets to the excruciating point and I don't get the anxiety. If I don't have narcotics available (and I now make sure I've always got a stash) as soon as I start feeling my chest tighten I will just start sobbing because I know what's coming, and how bad it's going to be. I've never experienced anything so horribly painful and scary and unbearable in my life as those episodes. OH - during those pain radiates all the way through my body - all over, but more strongly on the left side, and most particularly in the joints on that side. Everything from the joint on my big toe to my knee to my hip to my wrist and elbow up to my shoulder ... throbbing, stabbing, shooting ache and pain that is unbearable. On top of the feeling that my chest is being crushed. FUN!!

3. Mouth ulcers. I've been occasionally getting these ulcers in my mouth - seemingly from nowhere. I had even started wondering if I'd somehow contracted oral herpes it was so perplexing. Turns out those are a big signature of lupus.

4. I've recently started needing to urinate more frequently. I used to have the IRON bladder - I never used the toilet at work. Now I'm going 3 and 4 times per day there, and often needing to get up when I go to bed (before I fall asleep) to go one more time at night.

5. Mind numbing fatigue. My house never completely gets cleaned. My outside chores never get completed. I've just resigned myself to the fact I can't do it all and pick the most essential tasks to complete and anything else I manage is a bonus. I am continually overwhelmed, and never have any real level of energy. Mornings are a HUGE struggle.

6. Brain fog. Sometimes I feel like I'm interacting with the world through a foggy haze.

7. Pain. All over pain that never goes away. (This could be more a result of fibromyalgia - not sure) It waxes and wanes, but never disappears. My muscles hurt and my joints hurt.

8. Rash. I think I have the patented lupus rash - or that I am starting to develop it. Before the lupus test suggestion occurred I was beginning to think I may have rosacea -

9. Sensitivity to the sun. For a number of years now I've found that I get horrible ITCHY rashes in the sun. I just always figured it was "one of those thing" some people get - sun poisoning or heat rash.... but this is also a good indicator of lupus. (of course it's not definitive - not all rashes from the sun = lupus)

That's all I can think of right now... but that's a bit to chew on at any rate. ;) The thing is, the symptoms are so random and don't seem to tie together, so it's easy to dismiss things when they happen and not make the connection. Sounds FUN huh? lol

[Elidor]

16. Jebus

As bad as my thing is, it doesn't compare to that. I've known some hard times, but I think I'll count my blessings. At least my thing is going into remission now.

This last time around, I was sick for two months, barely able to function, let alone work. At the end, I couldn't eat anything, just had the dry heaves every day. My hands were on fire with a burning rash deep under the skin, a maddening itch that could drive someone insane in a few hours, but it lasted for weeks and weeks, and it hurt terribly. Once the whole thing gets into my body and goes systemic, I run the risk of a hive flower around my neck, my brain slowly shutting down, and my throat swelling up. I've been through this thing twice in the last 3 years, and the doctors had no idea what was going on. I can't afford to see an immunologist and have all the tests, so I'm kind of clueless what's going on.

[Madrone]

17. Well, please know that none of these things are 24/7

And I had the HORRIBLE itching thing about 10 years ago - it was all over my body. Now I don't itch. Things mutate and change and come and go... all of the symptoms. When I first got sick I was off work for 4 months - and I had some BIZARRE symptoms then.

Yours sounds just as bad as mine.... I HATE going to the doctor and hearing the "everything looks normal, we can't find anything wrong" thing... I just give up for awhile, then go back when I can't handle it and try again. I've been dealing with this for over 10 years now... I just got a fibromyalgia diagnosis between 5-8 years ago - and when I got hired for my current job in June of 2000 I finally got insurance for the first time in my adult life.

[Elidor]

24. My thoughts are with you

That kind of epic suffering is just so hard to endure. Right now it feels so good not to be hurting. I hope your symptoms will ease up and give you some relief.

[Deja Q]

14. Mine keeps forgetting to put in the remicade request...

(psoriatic arthritis)

Sorry to hear your may have lupus. :hug: With luck you'll be stabilized and in good shape in no time.

[FloridaJudy]

18. "Borderline positive" doesn't necessarily mean you have lupus

It means there's a possibility you have it. Other autoimmune disorders can cause a borderline result, as can some temporary medical conditions (such as acute/chronic infections and pregnancy). Go see the rheumatologist, and take his/her advice. Further testing will probably be in order.

[Midlodemocrat]

19. I have it. It's well controlled.

[JCMach1]

20. I have an aunt who nearly died with it... However, she has approved after nearly dying about 10 yrs

ago. She had to have a permanent trache tube for many years.

In its worst form, it can be devastating. Treatments now are lightyears beyond even what was know 10yrs ago.

[Tuesday Afternoon]

21. Sorry to read this. No advice here. Best wishes and healing energy

:hug:

[lost-in-nj]

23. sorry to hear that

I have a friend that was diagnosed a few months ago.....

And so far she is doing ok, she actually seems a little hopeful with some of the meds she is on..



:hug:

are they going to at least do another test
borderline sounds weird to me...


:hi:


lost

[GreenPartyVoter]

25. Aw, I am sorry *hugs*

[MichiganVote]

26. I had a borderline positive 24 years ago and so far nothing.

[Haole Girl]

29. Sorry I don't have any good advice for you

I'm fortunate that my tests all came back negative for lupus.
At one time, they thought that's what I had because of my symptoms.

Hope the rheumatologist can offer you some concrete answers and treatment.

I'll be thinking about you. :hug:

[Madrone]

34. Did they ever figure out what you have?

I've been fighting this battle for almost 11 years!

Finally got a fibro dx between 5-8 years ago. FINALLY.

[Haole Girl]

41. Different doctors have told me different things...

from FM to arthritis. All tests come back negative. I just deal with it via denial and motrin or alcohol (depending on the day of the week and the pain). ;-) I get by. My own theory is that it's depression. But I can't seem to convince a doctor I am depressed!! All that airline training, I think. It would be comical if it didn't impact my life so often. (sigh)

[Critters2]

33. I have a cousin with lupus, but I must admit I don't fully understand it

I do know that she had bad reactions to exposure to sunlight. She had lived in New Mexico, but her husband got a job at a college in Tennessee, largely so they'd be in a more wooded place, where she could be more careful about sun exposure. So, I gathered that it's a pretty complex illness that effects lots of the body's systems. My cousin seems to be doing well, though I know she gets regular treatment.

Wish I knew more, and could offer you advice or information. I do wish you well. My cousin was diagnosed probably 15 years ago, and, as I say, seems to be doing pretty well with maintenance treatment. I hope you can have similar results. :hug:

[Benfea]

37. I have no idea what lupus is but....

...this sucks. :(

[fudge stripe cookays]

39. It's one of the interconnected "auto-immune" diseases.

Lupus, MS, and rheumatoid arthritis are all your immune system kicking into overdrive and attacking something they shouldn't.

With MS, it's your central nervous system
With lupus, it's your connective tissue
With arthritis, it's your joints.

[TZ]

42. Hmm with Lupus

sometimes its the organs too (Kidneys, heart and sometimes brain)

[Pakhet]

43. Lupus can affect joints, muscles, connective tissue and organs

according to my rheumatologist. It does affect all those in me, but I don't get the rash much unless I'm being really stupid (like when I took the kids to the japanese festival at the park) I was diagnosed after 15 yrs of being told I was just a hypochondriac. When I couldn't stand it anymore, my new GP finally sent me to a rheumatologist and he figured it out and put me on plaquenil. I still hurt, but not nearly as badly as before :) oh, and I don't have any thyroid function anymore, don't know if that's a lupus thing or not, but I take levoxyl, since synthroid doesn't work right on me

on edit: oh yeah, and I think that it's mostly environmental too, as well as additives and preservatives in what we eat and drink. I do a lot better when I go organic, which isn't always possible, moneywise. but I've noticed a definate difference in the way I feel if I eat bread, or lunch meat or just about anything with a sulfide or nitrate in it

[TZ]

44. My sister with Lupus also has thyroid issues

Interesting. Maybe the disease does have something to do with it.

[Elidor]

47. Yes! Organic helps

When I first got my "thing," I thought it was food allergies run amok, and eventually I had a list of foods and additives a mile long that I couldn't go near. My safe diet is oatmeal, beef, white rice and some veggies. Over time I've come to realize that I can eat many of the foods I'm theoretically allergic to when I'm in remission from this thing.

But during an episode, I quickly have to go to all organic stuff. And even between episodes, I'm extremely reactive to nitrites and nitrates. If I eat bacon, I get a horrible pain in my chest that resembles a heart attack.

The crap they're putting in our food is just like the crap on our televisions: slow-acting poison. My health improves immensely when I eat real organic food.

Plus - get this - I was trying to stick to my safe diet, but I kept reacting even to my safe foods. My stepfather mentioned that there may well be penicillin (which I'm deathly allergic to) in store-bought beef. I looked it up and sure enough, it can happen. There's all kinds of drugs and hormones and antibiotics in our food supply these days, in additon to all the preservatives. I don't mind a little BHT, but stuff like sodium nitrite is just like having a skull and crossbones on the package for me. I went to organic beef and my "thing," my mystery illness, soon went into (mostly) remission).

[lost-in-nj]

45. I was talking to a woman

at the wake I went to yesterday because she didn't know about our friend having lupus
She told me she has known some one who has had it for 20 years...

gets some kid of reaction when she gets very upset and sometimes has to go into the
hospital for some treatment
and then goes home ok again


:hug:


lost

[GOPisEvil]

46. It's a good thing you aren't a horse, hon.

:hide:

You know I'm behind ya all the way, no matter what kinda crap your body is trying to do to you. I wish I could do more for you.

:hug::*

[Madrone]

49. No kidding.

No doubt I'd be at the glue factory by now.

:(