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Old 01-05-2005, 06:32 PM   #1
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Iwantacure HB User
I have a problem here, my symptoms

Hi everybody!, I have a problem here.
Those are my symptoms:
1) Bone pain in my hands and fingers
2) Pain all over the body - muscles and joints
3) Electric pain all over the body.
4) Pain in legs, feet, toes etc
5) Walk in pain.
6) Burning pain.
7) Dry Eyes
5) I don't have dry mouth yet...
6) Muscles stiffness
7) Hair loss.
8) Some hearing problems
9) Red rashes on cheeks sometimes and other parts of the body.
10) Red hands and fingers sometimes blue in cold.
Anyway, my lab tests for lupus and some other auto-immune are here:
1) C3=79 (the range is 90-180) - lower than the range
2) C4=18 (the range is 16-47) - so it's on the low side.
3) Positive ANA
4) elevated rheumtoid factor but still in the range.
5) a little lower than the range white blood cells.
I was wondering what do you think I have?
What other tests do you think I need to do as next week I'm going to the rheumtologist.
Is it sjorgens or lupus or something else?

Last edited by moderator2; 01-05-2005 at 06:39 PM. Reason: split thread to post your question as a new topic

 
Old 01-06-2005, 07:51 PM   #2
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Posts: 547
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Re: I have a problem here, my symptoms

You sound like you could definetely meet some of Lupus diagnostic criteria. You also sound to me (based on my limited knowledge in my own research) like it's possible you could have Fibromyalgia overlap or even Central Pain Syndrome going on. The "burning" and "electric" pain *****ed my ears some. I don't have much of this at all but I was diagnosed w/ Fibro and Central Pain Syndrome (CPS) I've learned as much as I can about CPS and I don't think I have it but you may want to look into it yourself. It usually occurs after some type of trauma to your Central Nervous System ei. accident, injury, stroke, but I think that it can also occur from trauma that is not so "clear cut" as well. I hope your Rheumatologist appointment goes well. Be sure to take your list and any questions you may have, also remember copies of your lab work, they will likely do more. Hopefully you get the answers you are looking for and if not, come back and join so many of the rest of us in "limbo land". We're all here for each other! Hope it goes very well!
Love,
Shawnee

 
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Old 01-08-2005, 12:22 PM   #3
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Iwantacure HB User
Re: I have a problem here, my symptoms

Thank you so much for your reply. Here is another question my doctor doesn't want to explain me. He was tapping on my body with this stick(is it to check reflex? I have no clue). I asked him what's going on and he said that I respond slower than other people.
I know it's possible to have osteoporosis at any age. I'm 34. I know I have it.
HELP

Last edited by Iwantacure; 01-08-2005 at 12:25 PM.

 
Old 01-09-2005, 02:52 AM   #4
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Re: I have a problem here, my symptoms

I'm new to SLE (Lupus) was just dx with it in Nov.04. My symptoms included severe pain in my hands and feet, joint pain and swelling, "butterfly" rash on my face, various size red spots (rash) on my legs. My pain was so bad I couldn't walk at times, open a jar, dress my 16-month old daughter. Things that I could do with no problem before. My husband had to help me out of bed sometimes because the pain was so bad. Many sleepless nights and tears. I'm on meds now, which help a lot, and I can function again. You definitely describe some of the symptoms I have. I also had a problem several years ago with Raynauds Disease, which is where your fingers and toes turn red, white, and blue. It is caused by sporadic blood vessel spasms that interrupt the flow of blood to the fingers and toes. I found that mine was triggered by exposure to the cold. Fortunately I haven't had any problems with that for a while but you are on the right track going to see a Rheumatologist. Best of luck in your search for a diagnosis.

 
Old 01-09-2005, 09:25 AM   #5
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Kathie T. HB User
Re: I have a problem here, my symptoms

Your labs are very similar to mine. Please keep me posted what the rheum said. I don't have much pain. Hairloss and skin rashes among my worst symptoms. I am still in the diagnosis process. Good Luck! Kathie

 
Old 01-12-2005, 10:33 AM   #6
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Angry Re: I have a problem here, my symptoms

Hi all!, yesterday I saw a Rheumatologist. He told me that it's likely I have Lupus or connective tissue disease. I told him it's not possible I have connectivce tissue disease.
He told me that I don't have all the symptoms for lupus? what you guys think? what other symptoms do I need? oh myyyy. He said I need to take predisnone for 6 months and see how it goes and then he will tell me if I have lupus.
My symptoms again: muslce/joints pain all over the body, painful to walk, painful to sit even!, all the time with pain, unexplained rashes on legs hands, red hands, pain the head, bone pain like especially in hands and feet, toes pain, fingers pain, gosh, what more....dry eyes almost sever, dry hair - lost 3/4 of my hair, dry skin, I don't have fibromyaliga that's what the RA said.
I feel my body is on a complete fever.
PEOPLE HELP ME!!!!. I don't want to take predisnone for 6 months - this drug has sever side effects like osteoporosis. Why should it take 6 months to diagnose me for lupus? I have all the symptoms. I told him I won't take any drugs.
I decided I will do the blood testing again and X-Rays.
He told me I need to take drugs in order to improve the quality of my life.
I told him I first need to know what I have.
What should I do? 6 months with predisnone without knowing what I have.
HELP HELP HELP
He said I don't have arthritis, no thyroid problems.
He said it will be lupus or connective tissue disease.
I don't believe him. I know I have lupus.
I asked him to write a letter so I can go on disability and he refused.
I cannot go to work and don't know what to do.
I need a definite DX.

Last edited by Iwantacure; 01-12-2005 at 10:37 AM.

 
Old 01-21-2005, 01:51 AM   #7
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Re: I have a problem here, my symptoms

I'm trying really hard to follow your post and having a hard time. From what I can tell, it sounds like your doctor is trying to give you a difinitive diagnosis but what he is not doing is explaining very clearly to you why he feels you do have Lupus or CTD and feels you do not have Fibromyalgia or anything else for that matter. Lupus is a diagnosis of exclusion at times because it can mimic so many other diseases. You need to ask your doctor to explain to you what is going on with your body and more important why he feels that it is happening (ie. labwork supporting? rashes specific? etc...). I understand where you're coming from on your concerns with prednisone however it's unlikely that 6 months would result in long term serious damage, but it is not a fun drug to take, however it may also work wonders for you and help your symptoms. You should also ask him why he is choosing Prednisone rather than a disease modifier such as Plaquenil. He needs to explain to you so that you understand just the what's and also why's of his impressions. If you get a chance, let us know where you're at okay! I hope you're not stressing too bad. Hang in there okay!
Love,
Shawnee

 
Old 01-21-2005, 05:43 AM   #8
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patience 50 HB User
Re: I have a problem here, my symptoms

Hi Iwannacure,

Have you had a full antibody panel yet. This checks antibodies for all autoimmune diseases. This is important because many of them have very similar and/or overlapping symptoms. Also a full endocrine panel, paying particular attention to thyroid. It is so hard to differenciate all these things.
Hope you feel better soon. May God Bless and Keep Us All
Patience 50

 
Old 01-22-2005, 03:23 AM   #9
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Kathie T. HB User
Re: I have a problem here, my symptoms

I agree with the above. You should ask about Plaquenil. I heard even if there is no definiate diagnosis, but Lupus is highly suspected some docs will start Plaquenil (an antimaliaral). Lupus also is such a hard disease to diagnose. Symtpoms vary from person to person and time to time. Many times people are suspected of having Lupus for a long time before the definate diagnosis comes. I have had a rheum who said definately not Lupus, and another rheum saying almost definately Lupus. So if that doesn't make things more confusing! Lupus also fluctuates in your blood which makes it all the more impossible. From what I understood if you test positive for the anti DNA you pretty much have Lupus. However, the other antibody tests (ANA, C3, C4) can indicate something, but the diagnosis will be from labs and clinical as well. I think it just takes time, and you rheum souds like he suspects Lupus, but needs more time to give a diagnosis, which is normal. Your symptoms (except for the joint pain)sound exactly like mine, and I am still in the diagnosis process. So please please keep me posted. Some things I found to alleviate symptoms: visene eye drops for red and itchy eyes help so much with the dry eye thing, and if you mix just a bit of topical cortizone with good lotion, that does wonders for these bazaar rashes. And I ended up getting hair extensions because I had lost about 50 percent of my hair. And I don't know if it looks different, but it has made me feel much much better.

Anyways good luck. Hang in there!
Kathie

 
Old 02-03-2005, 07:21 PM   #10
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Iwantacure HB User
Re: I have a problem here, my symptoms

Hello all. My doctor today told me he is pretty sure I have lupus (after looking again at my blood tests). I don't have antibodies but I have positive ANA and out of the range C3 And low C4.
He refused to write in his chart that I have lupus. I dont' know why.
So what should I do then? If he refused to confirm it, how can I ever go on disability?
HELP

 
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