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Old 05-24-2007, 10:22 AM   #1
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Dotgerda HB User
Anybody have my symptoms?

I've been tested 2 times for Lupus. I have fibromyalgia but have been developing other symptoms as well and I keep having a nagging feeling that I may have lupus or MS. I am still waiting for my rheumotologist's last test but he did say he doesn't think it's lupus. Anyway here they are: I am menopausal but keep getting a weekly period feeling (I had a hysterectomy but have my ovaries). All my test show that I am menopausal and there is no action on my ovaries. I also had a sonogram. I've also been getting sores on my tongue and sometimes feel like things stick in my throat while I swallow. The main problem is the weekly "illness" I get very dizzy, and achy and have to lie down. I cannot function. Both my knees ache on the sides and my head hurts and I feel crampy in my abdomen. Is there anyone with lupus who has this happen to her?

 
Old 05-25-2007, 05:11 AM   #2
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Re: Anybody have my symptoms?

Dear Dotgerda, Have you read the "sticky posts" (permanent posts) at the top of the thread list? The criteria for Dx'ing systemic lupus (SLE) are laid out. A person must meet at least 4 of the 11 in her lifetime, not necessarily all at once, to be Dx'ed with systemic lupus. And there are lesser kinds of lupus (called "subsets") in which people may meet fewer than 4. Does anything in the "sticky posts" ring any bells with you?

Another thought: what tests did your rheumie run? Some drs. will run ONLY the ANA, then will order more specific tests ONLY if ANA comes back positive. The problem with this is that in SLE, a small percent of people do remain ANA-negative. Further, in the milder "subsets" of lupus, the percentage of ANA-negative is much higher. Thus running all the specific blood tests right off the bat makes better sense. And taking a LIFETIME history is also very important.

I'm not a doctor (obviously!), but I suspect there are many things that could cause what you describe. Did your dr. also consider things like thyroid function? Acid reflux? Run-of-the-mill arthritis? i.e., do an entire physical?

I hope you post more when the mood strikes. Meanwhile, best wishes to you, from Vee

 
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Old 05-25-2007, 08:04 AM   #3
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Re: Anybody have my symptoms?

Quote:
Originally Posted by Dotgerda View Post
I've been tested 2 times for Lupus. I have fibromyalgia but have been developing other symptoms as well and I keep having a nagging feeling that I may have lupus or MS. I am still waiting for my rheumotologist's last test but he did say he doesn't think it's lupus. Anyway here they are: I am menopausal but keep getting a weekly period feeling (I had a hysterectomy but have my ovaries). All my test show that I am menopausal and there is no action on my ovaries. I also had a sonogram. I've also been getting sores on my tongue and sometimes feel like things stick in my throat while I swallow. The main problem is the weekly "illness" I get very dizzy, and achy and have to lie down. I cannot function. Both my knees ache on the sides and my head hurts and I feel crampy in my abdomen. Is there anyone with lupus who has this happen to her?
Hi, sorry that you are feeling so bad. Have you been tested for Lyme Disease, you live in NY which is a highly endemic state for Lyme. Your symptoms are consistant with Lyme, it mimics Lupus and so many other diseases and syndromes. Go on the Lyme board and read the symptoms thread and other posts and look up everything you can on Lyme, post some ?'s there. there are many people on the baord from NY, NJ, Mass, NH. You must be tested by a Lyme Literate MD (LLMD) other doc's will test only by Elisa a crap test that misses Lyme diag 70% of the time. an LLMD will test you for Lyme, co-infections, all auto-immune diseases, not just ANA, but anti-ro, anti-la, anti-ss, anti-dna, you name it they test for it. There are several LLMD's in NY, 2 of the best LLMD's in the counrty are there, since that is where most of the Lyme disease is. You can get their names from the Lyme board. the knees are usually the first area to be attacked by lyme, and the headache is a definate too. I was misdiag. for 8 years before getting my diag. My rheumi kept telling me that eventually I would come up pos. with Lupus, I never did, and I did have a pos. ANA for 8 years, 3 months after starting my ABX's for Lyme, my ANA is neg for the first time in 8 years. Lyme is a serious dibilitating disease, it will destroy your nervous system, thyroid, adrenals, joints, muscles, anything it can get into. Many lyme sufferes have also though they had MS. Please get this ruled-out, it is a must. Sincerely, Sarah

 
Old 05-25-2007, 11:11 AM   #4
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Re: Anybody have my symptoms?

Hi Sarah,

Do you know if there are any lyme literate doctors in virginia? I was tested by western blot and came up <.91 I guess negative, but have many symptoms and have lived in upstate NY for for 18 years, worked in the veterinary filed for 8 years, and have found ticks on me in the past. My dr. has diagnosed me with undiff connective tissue disease. My only abnormal blood work is an ANA speckled pattern that has been 1:320, 1:640, and 1:1280 on 3 different occasions. I have severe memory difficulties, joint pain and swelling, headaches, severe fatigue among others. This has been going on for 6 years now. I am now on Plaquenil and 10mgs prednisone. What do you think? Can you just have your blood drawn and sent to the lab in California that specializes in this?? I am being seen by a rheumy, but he dismissed Lyme after the western blot came back Negative. I am thinking about a third opinion to one of these special dr.s because my rheummy has never tested me for any other viruses and I have had some weird things happen to me in the past (viral meningitis, severe reaction to a rabies vaccine, bitten by a brown recluse spider and leg swelled and sloughed) Thanks in advance for any help. I am in that stage of wanting to know what is wrong with me. I am feeling better on the meds--esp the steroids now. Thank you
Kelley

 
Old 05-25-2007, 12:54 PM   #5
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Re: Anybody have my symptoms?

Quote:
Originally Posted by Kel123 View Post
Hi Sarah,

Do you know if there are any lyme literate doctors in virginia? I was tested by western blot and came up <.91 I guess negative, but have many symptoms and have lived in upstate NY for for 18 years, worked in the veterinary filed for 8 years, and have found ticks on me in the past. My dr. has diagnosed me with undiff connective tissue disease. My only abnormal blood work is an ANA speckled pattern that has been 1:320, 1:640, and 1:1280 on 3 different occasions. I have severe memory difficulties, joint pain and swelling, headaches, severe fatigue among others. This has been going on for 6 years now. I am now on Plaquenil and 10mgs prednisone. What do you think? Can you just have your blood drawn and sent to the lab in California that specializes in this?? I am being seen by a rheumy, but he dismissed Lyme after the western blot came back Negative. I am thinking about a third opinion to one of these special dr.s because my rheummy has never tested me for any other viruses and I have had some weird things happen to me in the past (viral meningitis, severe reaction to a rabies vaccine, bitten by a brown recluse spider and leg swelled and sloughed) Thanks in advance for any help. I am in that stage of wanting to know what is wrong with me. I am feeling better on the meds--esp the steroids now. Thank you
Kelley
Kelley, I don't personally know an LLMD in Virginia, the one's I know of are in NY, NJ CT, NH, Mass. But you can post on the Lyme board and ask, and someone is bound to know. I do know there are people on there from virginia that see LLMD's. My rheumi did the same thing to me, but my western blot was equivicol, he yelled at me and walked out of the room when I asked him to retest! What a jerk Most docs are not real knowledgable about Lyme, and just go by the neg. test, which is so inaccurate it's pathetic! You cannot send the blood samples to Igenex without a doc's signature. What you could do is have the kit sent to you and take it to your doc and insist that he sign for the Western Blots to be done and then when the results come in post the IGM and IGG bands on the Lyme board. You can have a neg. Western blot from Igenex but be pos. by the bands, this disease is not cut and dry, there are alot of variables, but those bands don't lie. Igenex and the CDC set the protocal for diag. Lyme for reporting purposes only, but lyme needs to be diag. by pos. bands, cd57 and patient history. Also ask your doc to test your cd57, it is only low in lyme disease (normal range is 60-360) below 60 is significant for Lyme. With your symptom history and tick history I would definately do everything I could to get a proprer diag. or at least to completely rule it out. Go on the lyme board, we will help you with anything we can there, Sincerely Sarah (oh, I also had viral meningitis)

 
Old 05-31-2007, 07:44 AM   #6
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Dotgerda HB User
Re: Anybody have my symptoms?

What and where are "sticky posts?"

 
Old 05-31-2007, 05:46 PM   #7
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Re: Anybody have my symptoms?

The "sticky posts" are the three permanent posts at the top of the thread list. Look for these thread titles: Answers to Test Results questions, Criteria to diagnose lupus, and Criteria to diagnose antiphospholipid syndrome.

Best wishes, Vee

 
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