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Old 12-12-2002, 11:46 AM   #1
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shasha HB User
Post rhumy says

Hi All,

I went to my app. today thinking I had already been diag. with Lupus.
Doc said my AnA went from a 160 to 320 , he said it was very high but my other blood work was normal. He said I still might not have Lupus. My symptoms are:
fatique, weakness, headaches, dizziness, nausea, joint pain, daily low grade fever, facial rash, hand rash both are very sensitive in sun and other unatural lighting, stiffness bigtime in the morning and everytime I get up after a rest, tingling and numbness, and the rhumy has diag. me with tendinitis in my shoulder, raynauds, and carpal tunel syndrome.

Do you think my Rhumy should have diag. me by now or since he only seen me a couple times maybe he does not want to rush into it. Is that how they are?
Do you think theres a chance its not Lupus. Do more blood test have to come positive(anti-double stranded DNA test)to have Lupus?
Thanks for taking the time to read this.
Sincerly, Sha

 
Old 12-12-2002, 12:10 PM   #2
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I would suggest getting a second opinion. Not that your current doctor is bad, but a lot of these auto-immune diseases overlap and can take time to diagnose. Sometimes a second opinion helps tremendously. I don't have Lupus (my cousin does), but I do have RA. What you are describing does sound like Lupus and I know you can have normal blood work at times.

Good luck!
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Old 12-12-2002, 12:49 PM   #3
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Lupus is a very tough one to get a correct diagnosis on – and many of us have been “undiagnosed” when we are not having a flare - blood work is only a part of it. I have had it for 30 years and was first “misdiagnosed” with RA – start keeping a record of your own with any health abnormalities.
I read some of your other posts – it’s your body and this is not a dress rehearsal – no question is a stupid one – keep asking!!! (by the way Raynauds is definitely on most Lupus complaint lists) and be pro active in your own diagnosis and treatment plan – did you ask your Rheumy how many Lupus patients he has – just because he is a Rheumatologist doesn’t mean he is up on all the latest Lupus indicators and/or the best treatment plans!! No matter what you have first on your list should be eating better, also herbal remedies (no Echinacea!!), vitamin supplements (especially B’s) and exercise (“bodies in motion tend to stay in motion” will help a lot with the stiffness) – Lupus symptoms can vary in every individual, listen to your body and avoid those things that give you trouble of any kind!!!
Wishing you many pain free days
Tess

 
Old 12-12-2002, 01:09 PM   #4
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I think technically you have to have one other abnormal blood test to meet criteria for lupus. ANA alone is not enough there has to be other abnormal lab suggesting autoimmunity.--I think--check diagnostic criteria. Susan

 
Old 12-13-2002, 06:51 AM   #5
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thankyou kitty, susan, and tess.
Tess, thank you for your valuable advice I'm 37 yrs old and up until a yr. ago I walked 2miles a day and now I'm lucky if I can get through 10min of floor exercise.
I do take good vitamins and am trying to eat better.
Do you or anyone find when you exercise even a little you feel like you ran miles?
Have a good day and God Bless
SHA,

 
Old 12-13-2002, 05:17 PM   #6
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Sha,
I find the exercise can go both ways for me. Sometimes, doing it will almost kill me for days after. Other times, it really helps push through the pain. I feel overall though that's it's beneficial, you just have to start out extra slow.

Has your Dr. put you on any meds yet? I don't think the specific dx really matters so much, as long as they're treating you for some autoimmune disorder, and keeping a close eye on any developments.
The treatment is a lot the same for many of the autoimmune disorders. Some Drs. seem to be afraid to put a definite label on it without a sure test of some sort.............there just aren't ones for some of these.

Tess, why did you say, "no Echinacea!!"?

Ann

 
Old 12-13-2002, 08:18 PM   #7
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thanks for the reply Ann, no my Rhumy has only put me on a muscle relaxer (Flexeril) for my tendinidis and Meclizine for my dizziness. He said he is going to just treat my symptoms until I see the dermotologist for my facial and hand rash.
Sha,

 
Old 12-14-2002, 11:34 PM   #8
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Sha
I too have been waiting for a Lupus diagnosis for several years. It is sooo difficult to diagnose because over the years you see different drs for different symptoms (ie, dermatologist, PCP, rheumatologist) and alot of the material I have read says you need to have several symptoms OVER TIME not all at once. I especially find that if YOU mention Lupus some drs automatically dismiss it because it was not THEIR idea, esp since I am a nurse and who am I to make a medical diagnosis...
I also think Tess is right about asking how many Lupus patients a dr has and keep ASKING questions.
I am only 33 and I am trying to find the connection btwn lupus and heart disease as I suffered a heart attack last Friday and I actually read on another board about someone who states her attack was caused by lupus.
Good luck to you !!
Yvonne

 
Old 12-15-2002, 02:26 PM   #9
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Hi Yvonne,
I am so sorry you had a heart attack. Thank God your still here. Yes I can understand what your saying. I never know what to bring up at the Doctors. My husband who is a pharmacist tells me never to mention I get on the computer and research Lupus because then they won't believe my actual symptoms. Why would anyone want to make this up? My Rumy says he is "The Lupus Doc" will see, I've only seen him twice. My last app. he came flying in an hr. late and didnt give me much time. Hopefully one day soon we will have answers. I was seeing a Neuro and for the last year shes been saying I have MS but when I started getting a malar rash she sent me to a Rumy. crazy huh. Thanks for listening and for the response.
God Bless
Sha,

 
Old 12-15-2002, 04:25 PM   #10
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Sha
I am thanking God every day that I am still here for 3yr old son. I'm a single mother and I was so afraid for him to be left here without me...sorry, I get a little mushy when it comes to my kid. I waited almost 2 yrs for his adoption to be final and this scared me.

 
Old 12-15-2002, 04:27 PM   #11
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Sha
I am thanking God every day that I am still here for 3yr old son. I'm a single mother and I was so afraid for him to be left here without me...sorry, I get a little mushy when it comes to my kid. I waited almost 2 yrs for his adoption to be final and this scared me. I believe your husband too, the drs do get weird, like you said, who wants these problems?? I hope your doc helps you and if you ever need to talk feel free to email me.
Yvonne

 
Old 12-17-2002, 06:14 AM   #12
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Hi,
I was sick for over a year now. My Rhem. thought I might have lupus but my ANA was borderline everytime. I have all the symtoms you do, swollen joints to. You may have said that. After a year of treating me with celebrex and later bextra he has diagnosis me with lupus. I now am on the plaqil (sp) I also ich alot.
He said I had had the symptoms to long. So I would think you do have lupus. You have the blood work of the ana I did not have such a high number. What did he say you have?
Ceya

 
Old 12-17-2002, 04:39 PM   #13
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Hi Ceya,
Waiting in worry is awful huh. What made him diagnose you finally? Yes I to have lots of joint pain. My first AnA was 1:160 and the recent one was 1:320. He did say it was high. I think since he has only seen me twice maybe he wants to watch for more symptoms, although I also have a malar rash and its also on my hands. He wants me to have it biopsied by a dermotologist. I heard waiting for an app. can take forever. Thank you for writing.
Sha,

 
Old 12-18-2002, 06:09 AM   #14
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Hi,
Well Shasta this is what happened with me. I first was dx with the parvo b 19 virus. It showed up high in my blood work. Mainly because I had swollen joints, fatigue, and a slap cheek rash on my face. And my joints and body would break out in this flat red rash and ich. That was a year ago. My ana was always borderline. He treated me with celebrex Max. amount, muscle spasm Med to take when needed and transadone to help me sleep, This has been great I use to wake up 2 or 3 times a night restless and achy now I can sleep pain free, only problem is I love to sleep late but now I wake up aching so I have to get up and move around and take my bextra, I guess the meds were off. The celebrex was great I could not believe how much better my joints felt. I do not remeber not hurting and really began to except it as normal of the years before I really got down. He told me that even if it is lupus the treatment was basically the same. Now that it has been a year and I still have symptoms he says that it is lupus due to the duration of the illness and the symptoms. He stated that I am functional treatment is the same but he did add planqil (sp) For lupus because the ich just about drives me crazy. My fatigue is so much better, I still ache but not as bad. Some days OK and other kinda rough. I do not understand why they will not treat your symptoms?
You have the one thing I didn't a high ana. The ana is not always the indicator for people like me but it is definetly there for you. I hope this helps I am still kinda in the dark about this illness. I do not like the unexpected and the info is so sketchy. I just take it hour by hour. Never knowing if this is a symptom or am I getting sick or is this important to call the doctor???
Love you hear from you,
Ceya

 
Old 12-18-2002, 04:06 PM   #15
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hi ceya,
i hope you dont mind lower case some days its just easier. i cant imagine feeling so itchy all the time. that definetly would drive me nuts!! i feel achy all the time also it started a yr ago and it was here and there and then more often until now its everyday like you. im glad you have some relief with meds.
i go back in to the rumy in 2 mo. and hopefully he will do more for me. i dont know if i mentioned before he gave me a muscle relax. and something for my dizziness which makes me so tired i cant function. id rather feel dizzy. im getting use to it.
ive read rumy like to watch symptoms over a period of time before they will diagnose. im not sure.
what does plaqunil do for you. does it help?
i also run a fever almost everyday after about 4. do you?
sha

 
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