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Old 05-27-2009, 09:55 PM   #1
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Unhappy Getting frustrated and want a diagnosis.

I'm tired of going from doctor to doctor TRYING to figure out what's wrong with me and coming up with nothing! I'll try to list as much as possible, but this has been going on for so long and in some cases I simply don't have the test results. I'm so glad they actually give them to you now!! I know you all can't diagnose me....but I'm just looking for support I suppose.

This all started several years ago...I believe I was 21. I'm 35 today, so you can imagine my frustration!!

It started out with pain in my legs. They were so painful I could barely walk. I have no clue how it started or how long it lasted because that was so long ago and my first real symptom. After that I got "walking pneumonia" (not sure how long after, maybe a few months?) With it came the usual symptoms. Pain everywhere, chest pain, fever, extreme fatique, coughing, just feeling like crap etc. etc. A couple months later the symptoms came back. The Dr. was just going to give me more meds but decided to do another chest x ray just to be sure. Well I was told I didn't have pneumonia and they didn't know what was wrong with me. But one of the Dr.s noticed my "butterfly rash" on my face that I've had since I was a teenager and asked me about it. They thought that maybe I had Lupus.

I was sent to a Rheumatologist which I could NOT afford because I had no health care at the time. She ran some tests and said that my SED rate was high. I didn't know what that meant at the time. (And I have no clue what other tests she ran, but I'm assuming she ran an ANA) She said she thought I had "mixed connective tissue disorder" and tried to write me a note saying I had Lupus so I could get medical from the state. Of course they denied me and told me that "I didn't LOOK sick"

Eventually my symptoms went away (they stay for weeks! It's horrible!) and I was fine for awhile. But sure enough eventually they came back. They pretty much start the same way.... either my shoulders/upper back start hurting first or my chest. I'll be in so much pain I can't even lie down. When my chest hurts they tell me I have pleurisy. (I didn't even know what this was for years) But then I'd have pain everywhere. From my head to my toes I'd be in severe pain. I'd be so tired and drained it was impossible to get anything accomplished. This would go on for weeks before finally subsiding, but no pain medication worked.

One time in 2001 I had a "flare up". I had just come back from vacation with my bf. He lived in Eastern Canada so I flew there from Wa. which I didn't realize would probably cause jet lag. (I just realized the other day that it was probably what some of my symptoms were) While I was there it felt like the room was moving and I kept bumping into things or losing my balance. When I got home that finally subsided but my legs were messed up. The left one was stiff and the right one was like jello. So it was nearly impossible to walk, not to mention they hurt very badly. Then one day my left arm and lower back went numb. I freaked out and went to the emergency room. They said I probably had a pinched nerve and sent me home. I went to my Dr. and he agreed with that. He gave me meds and while I was down filling the prescription my face went numb. That's when they started testing me for MS.

I was sent to a Neurologist and they did every test you could think of. Cat Scan, MRI, Some electrode test which is quite painful!!! And all they came up with is that my right side is not as strong as it should be and I don't swing my arms enough when I walk. (Oh, and the Dr. looked at my old records and said "did you know you tested positive for Rheumatoid factor years ago?-Nope...didn't even know what that WAS...and of course he didn't TELL me either.)

So recently I've had other symptoms pop up and I had my Dr. check me for Hypothyroidism. Those tests came back negative but after talking about some of my history he decided to retest me for Lupus.

This takes me to my current state. I'll list my current symptoms and my test results. Can you help me decide?

Still have the butterfly rash. One dr. tried to treat me for Rosacea when I asked if it could be that, but it didn't work.

In the last year I've been losing my hair

Dry gritty eyes

Difficulty swallowing/sore throats

Extreme fatique

Sleepiness (sometimes extreme)

Trouble sleeping

Raynaud's Syndrome (showed up in the last several months. It is not severe and has only occurred a handful of times)

(not sure if it's related but I've had Carpal Tunnel for several years)

Every now and then my fingers will get stiff...not like my carpal tunnel....not sure if this is "Rheumatoid" or something else

(now this last part only happens when I'm having a "flare up")

Severe pain throughout my body. Right now it's stuck in my upper back/shoulder area and neck. But it was my whole body a few days ago. (I just came back from a 3 day cruise on the east coast so I'm assuming some of it was jet lag)

My ANA came back 1:160 and the pattern is Nucleolar which I see is associated with Scleroderma. The other tests they took came out normal. My SED rate was 20. My Anti DS DNA IFA was <1:10 which says is negative though I don't know what would be considered positive?

Along with the positive Rheumatoid Factor.

Any ideas?

Last edited by Aundreya; 05-27-2009 at 09:55 PM.

 
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Old 05-27-2009, 11:11 PM   #2
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Re: Getting frustrated and want a diagnosis.

Now I'm confused...after searching everywhere online I keep finding that a 1:10 Anti DS DNA is considered positive?

 
Old 05-28-2009, 12:43 AM   #3
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Re: Getting frustrated and want a diagnosis.

hi Aundreya ... welcome to the board!
***HUG***
it has gotto be the worst part of being sick ... the dx-limbo!
i am trying to come out of a flare and my (ex)rheumy said my lupus was not acting up ... so you are not alone in the feeling cruddy dept. with doctors that don't help! don't give up just push HARDER ...
are you able to get a 2nd opinion?
A
(ps hang in there ppl will share there insight with you soon)

 
Old 05-28-2009, 04:02 AM   #4
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Re: Getting frustrated and want a diagnosis.

Aundreya, hi & welcome. I don't know the "reference range" for anti-ds-DNA, but I want to point out that it isn't the only autoantibody seen in lupus. Hopefully your dr. is testing you for all the usual suspects. Dr. Wallace lists in his lupus hardcover at least 16 autoantibodies, serum complement problems, etc. seen in lupus. (Dr. Wallace's book is in most libraries. Also, Dr Robert Lahita is another very helpful author.)

Anti-ds-DNA & anti-Sm are the only two considered specific enough to "make" the diagnostic criteria list. (FYI, that list is in a "sticky post" at the top of the thread list; if you haven't read it, you should.) The others from Dr./ Wallace's list are "squigglier". Many occur in lupus but in other autoimmunes as well. For example, anti-Ro (associated with dry eyes) is seen in lupus, Sjogren's and C2 complement deficiency. And positive RF occurs in both rheumatoid arthritis & lupus. Etc.

Once you meet a criterion, envision checking it off permanently, in indelible ink. Well, I should say that's how the criteria OUGHT to be understood by drs. As my current rheumie asked (sarcastically), when he first reviewed my lifetime medial history, "What were they waiting for, you to have everything all at once?" So if a rheumie doesn't ask for, and then consider carefully, your LIFETIME medical history, that's not a good sign, as I see it.

As for ANA patterns, I think they're a little "squiggly", too. Dr. Wallace says the only one that's specific to lupus is rimed, so apparently the other patterns can occur in multiple conditions...

I understand how dismayed you are. I had episodes from early adolescence onward that only much later were viewed as part of a flaring/receding lupus pattern. As Angel MJ says, you must keep pushing for answers. And do look for those library books. While books can't Dx you, reading helps you ask better questions & also to get some inkling whether your dr. is really up on the subject. (I switched rheumies after reading & got answers in less than a month.) HANG IN THERE, OK? And post when the mood strikes---we'll be here for you. Best wishes to you, Vee

 
Old 05-28-2009, 06:22 AM   #5
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Re: Getting frustrated and want a diagnosis.

He did seem to test for everything which is good...but like I said unfortunately (should I be saying that?) everything else came back normal.

Anticentromere ab Negative -
Sjogrens SS A ab 47 <100- U/mL
Sjogrens SS B ab 7 <100- U/mL
ENA (Sm) 9 <100- U/mL
ENA (RNP) 85 <100- U/mL
Scleroderma SCL 70 22 <100- U/mL
Complement C3 103 88-201 mg/dL
Complement C4 26 10-40 mg/dL
Anti DS DNA EIA 3 <100- U/mL
Antithyroid perox ab <10.0 <35- IU/mL

 
Old 05-28-2009, 01:10 PM   #6
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Re: Getting frustrated and want a diagnosis.

A ... no one here will think you are twisted for being dissapointed in a normal result! plenty times you read how ppl are hoping for a pos result b/c it = dx! that's all.
on some level it is a relief not to have theses things but also does mean the push goes on ... can't say 'well there, that's what it is, take these' (wouldn't life seem so simple then)
i definitely agree with Vee re:the reading (actually everything she says) but the books + mssg boards have helped me understand things!
always hang in there no matter how thin the thread ... start a thread here and you will see how much strength it can give you!
Angelique

 
Old 05-29-2009, 04:14 PM   #7
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Re: Getting frustrated and want a diagnosis.

Another thought. I know that you don't really treat Lupus you treat the symptoms. (If I am correct? Or do you take meds to prevent symptoms even if you seem to be in remission?)

The main symptom (provided it's Lupus and not Rosacea) that's quite annoying at the moment is my facial rash (definitely the butterfly shape across my nose and cheek area). It does not seem to spare the folds running diagonally along nose to outer edge of mouth, but there have never been any bumps on it and it never goes away. (I got it as a very early teen) It does burn or get redder sometimes.....when I drink alcohol or go into the sun or get hot. You can easily see the blood vessels (and when I'm in the sun looking into a mirror you can watch the blood go through them....kinda cool looking lol)

I've tried Rosacea creams to no avail. But provided it is Lupus...what do you DO for it? Will it ever go away?

Last edited by Aundreya; 05-29-2009 at 04:15 PM.

 
Old 05-29-2009, 06:33 PM   #8
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Re: Getting frustrated and want a diagnosis.

Aundreya, actually there are three classes of "disease-modifying" drugs that treat lupus. The goal for all three is to suppress the production of unwanted autoantibodies (like anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, antiphospholipid, ETC.) that are attacking and damaging cell matter. In order of mildest to strongest, the classes are anti-malarials (Plaquenil is one example), steroids, and immunosuppressants.

Dr. Wallace covers these drug classes in his hardcover, describes what each does, side effects, etc. This hardcover is available in most libraries & larger bookstores. Hope this helps some! Take good care, Vee

 
Old 05-29-2009, 06:55 PM   #9
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Re: Getting frustrated and want a diagnosis.

Quote:
Originally Posted by VeeJ View Post
Aundreya, actually there are three classes of "disease-modifying" drugs that treat lupus. The goal for all three is to suppress the production of unwanted autoantibodies (like anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, antiphospholipid, ETC.) that are attacking and damaging cell matter. In order of mildest to strongest, the classes are anti-malarials (Plaquenil is one example), steroids, and immunosuppressants.

Dr. Wallace covers these drug classes in his hardcover, describes what each does, side effects, etc. This hardcover is available in most libraries & larger bookstores. Hope this helps some! Take good care, Vee
Thanks for the reply! I'll have to look into his book. Do the drugs help with the butterfly rash?

 
Old 05-30-2009, 03:14 AM   #10
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Re: Getting frustrated and want a diagnosis.

Aundreya, I believe Plaquenil is considered very helpful with skin issues. Good luck, V.

 
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