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    Old 10-28-2004, 02:50 PM   #1
    MomwithMS
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    Question Possible lupus?!?!

    Hello. As my name suggets, I have multiple sclerosis. I was diagnosed with MS almost nine years ago. I had a confirmed bout of optic neuritis, neurogenic bladder, and a history of relapses.

    My neuro said that MS definitely fits the optic neuritis and neurogenic bladder. . however, some of my other symptoms aren't MS typical. He ran the Reichlin profile about two weeks ago. My ANA was negative, but the SS DNA IGG antibody came back as moderately positive. The lab report indicates those with the IGG antibody typically have the "ANA negative" lupus.

    I knew nothing about lupus until this test came back, but now that I look at the symptoms, it does fit. My hair has been falling out for the last six months. I have very achy and inflammed joints. I am so fatigued that some days, taking a shower is all I can manage. I also have a funky rash on my face, but it is not butterfly shaped. It's on my cheeks and forehead. I also have a similar rash on my upper arms and ankles.

    Anyone have a similar experience or have some insight into this???

    Thanks so much
    Leslie

     
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    Old 10-28-2004, 03:38 PM   #2
    AngelicBrat
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    Re: Possible lupus?!?!

    Hi Leslie!

    Its unbelievable how much your story sounds like mine!! I have Lupus, and a blood clotting disorder called Antiphospholipid Syndrome or "Hughes Syndrome". MS mimiks Hughes Syndrome BIG time so a patient can have similar symptoms to MS and be misdiagnosed with it. 80% of people diagnosed with MS actually have Hughes Syndrome! The difference between MS and Hughes Syndrome is that in MS patients there are Obligonal bands seen in the Cerebral Spinal Fluid. If your Neurologist did NOT do a spinal tap and find these bands, then the diagnosis is probably not right! Especially because you have antibody tests that are SPECIFIC for Lupus.

    You need to be tested for Hughes Syndrome immediately! The blood tests are the Lupus anticoagulant and the Anticardiolipin Antibody test. If either or BOTH of those are positive then you have it. They have to re-test you in another 6 weeks to confirm. There are patients with Hughes Syndrome like me that dont have the antibody test positive at this time. Hughes Syndrome can be Sero-negative too which makes it very confusing for Rheumys to diagnose.. thats why we must see Rheumys that are well studied on Lupus and Hughes Syndrome. Do you have a history of clotting? (miscarriage in early pregnancy, strokes, leg clots or mini-strokes?) There is information on Hughes Syndrome on the main Lupus board if you want to check the symptoms and history. I have had repeats of Optic Neuritis, with my most recent bout lasting 2 years straight right now. I am legally blind with vision that is 20/400. It confused the doctors here but I went to England to see the best Rheumatologist in th world (Dr. Hughes). Lupus AND Hughes Syndrome can both play a huge role in the development of Optic Neuritis. The Lupus test that you have positive is over 99% accurate for Lupus. Do you get migraines? I am interested to hear all of your symptoms. The treatment for Hugehs Syndrome is easy too.. all that is needed is Warfarin, Heparin, Plavix or basic aspirin depending on the patients history and clotting history. If you have had clots in the past, the best way to feel better is by going on Warfarin. If your doctor needs information, please print the information on the forum board entitled "Criteria to diagnose Hughes Syndrome". I dont think you have MS, I am about 90% sure you have Lupus AND Hughes Syndrome. Take care and I dont want to scare you here, but information is power! We will help you, and please ask any questions that you want!

    ~Luv, Angelic

    P.S. Lupus and Hughes Syndrome can go into remission in patients in the earlier stages. I have had about 6 different flare ups over my lifetime.. sort of like MS does too! The Lupus is treatable too, and you will feel SO much better when you are treated for the Lupus and especially teh Hughes Syndrome!

     
    Old 10-28-2004, 03:39 PM   #3
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    Re: Possible lupus?!?!

    Another thing to add:

    You can print off my posting here and take it to your doctor too! Its up to you, but this happens so frequently I get really frustrated with some doctors. You are one of many.. and I hope we can get you diagnosed and treated correctly

     
    Old 10-28-2004, 09:42 PM   #4
    MomwithMS
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    Re: Possible lupus?!?!

    I am so glad you replied. Thank you very much. I was so afraid I'd hear "nope, never heard of what you're talking about. You must be nuts!" LOL

    Did you have MRI's? Did you ever have lesions on your MRI?

    Yes, I do have a history of miscarriage, but I haven't had a problem with blood clotting (to my knowledge). I also had a very difficult pregnancy with my youngest, including the loss of a twin and a partial placenta abruption.

    Yes, I get HORRID migraines, and I swear to God, my symptoms get MUCH MUCH MUCH worse when I'm on my period. This month, I spent the first three days in bed. Literally, my head hurt, my body hurt, and I didn't have the energy to even take a shower.

    I think I had the lupus anticoagulant test, but I'll have to make sure. All of my tests were negative, except for the SS DNA IGG antibody. The lab report specifically said that the antibody was found in patients with SLE, especially those with "ANA negative" SLE. I don't know much about the other tests.

    I am going to try to find out what tests I've had done. Basically, my symptoms are FATIGUE, achy joints, strange red patches of skin on my body and a red rash on my face, inability to handle heat, FATIGUE, vision problems, bladder problems, FATIGUE, migraines, stiff fingers, and sometimes, my fingers and toes get VERY cold for no reason at all. It's funny b/c my hands and feet aren't cold. . just the fingers and toes. I have trouble sleeping b/c of pain. I feel like if I lay in one place too long, I stick in that position. I also get severe spells of dizziness.

    Does this sound like your symptoms? And how do I find a rheumotologist who is knowledgeable in this area? I live in Oklahoma.

     
    Old 10-29-2004, 12:42 AM   #5
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    Re: Possible lupus?!?!

    Hi again!

    Your symptoms are exactly like MANY Lupus and Hughes Syndrome patients. Having a miscarriage is a "clotting problem" in the eyes of Hughes Syndrome. The fact that you had problems with your placenta also sends off bells in my mind! I am now 99% sure that you have Lupus and Hughes Syndrome. They dont always test patients for Hughes Syndrome, so make sure that your doctor does it soon. As for the MRI lesions, the same ones show up in Lupus and Hughes Syndrome. Thats why its so hard to decifer one from the other! I have had lesions and clots in my head, so I totally understand what you are going through. Your symptom list is very similar to mine too!

    As for the cold hands and feet-- do they turn completely white with red or blue tips, or just plain white? Do you get red splotches on your hands when they are burning hot? They kind of resemble "Hamburger meat" when hot in lots of us and in the cold they feel like they are going to fall off! That condition is called Raynauds Phenomenon and it goes with Lupus and Hughes Syndrome too! I will do some research here and see if there are any Rheumy's in your area. I am in the middle of organizing all of my medical notes etc so I am not so sure where they are tonight LOL Please take care and I am glad that you arrived on the board. I promise you with all my heart that we will get you looked after and feeling better in NO time

    ~Luv, Angelic

     
    Old 10-29-2004, 03:46 AM   #6
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    Re: Possible lupus?!?!

    MomwithMS,
    Angelic is right on target. I've been watching this thread of posts and completely agree with what she says. Like Angelic, I have antiphospholipid antibody syndrome (Hughes, also known as APLS, APS or sticky blood) and was just diagosed with SLE. Keep in mind that I too, have a negative ANA. Miscarriages are a classic sign and the SS-DNA is specific for lupus, as well as Raynaud's. Angelic has been right on the mark with myself and others, I put alot of weight into what she says. Symptoms for APLS and MS are identical. Re-test for the LA (lupus anticoagulant) and the ACA (anticardiolipin antibodies). You certainly sound like a candidate for lupus or Hughes. Getting correctly diagnosed is important. You may remember seeing me post about this on the MS board. Shari

     
    Old 10-29-2004, 12:57 PM   #7
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    Re: Possible lupus?!?!

    Thank you both. Yes, Shari, I do remember you posting on the MS board.

    Now, what if all my other blood tests are normal? I was tested for ANA, JO-1 antibody, SM antibody, and all those tests were negative. Only the IGG was positive. Is that common?

    And the optic neuritis is confirmed (through evoked potentials0, as is the spasming bladder (through urodynamics test).

    I am so thankful to have literally stumbled onto this site.

    I am having a very bad day. I received my medical records from almost ten years ago - when all this began. AND, the doctor said that he felt some of my symptoms were induced by hysteria. I thought I was over all the pain associated with that (being labeled a head case) . . but evidently not. I was only 20 when this journey began. I will be 30 in March. I was treated like a headcase. When the doctor suggested symptoms of hysteria, I MADE MY OWN APPOINTMENT at a mental health hospital and requested a FULL psychological eval. I knew I wasn't faking it, and if I needed to prove it wasn't in my head to get treatment, then that's what I would do.

    After the psychologist wrote a full page letter to the doctor stating that I have ZERO thought disorders and there was no psychological basis for my illness, the doctor asked me to go see a "friend of his" who was a psychologist for another psych eval. He felt that I needed another psych eval. I refused.

    The psychologist told me to find a new doctor, and I did. I don't regret that decision for a minute.
    It was still hard to see those old medical records. . . . And I am thankful that after ten years of symptoms, I finally have some scientific evidence of my illness!


    Anyone else labeled as a headcase?
    Leslie

     
    Old 10-30-2004, 09:36 AM   #8
    lovemythreeguys2002
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    Re: Possible lupus?!?!

    Hi.....I just wanted to say that if you have Lupus, it's most likely that it's Lupus and not MS.....I think the odds of having both are only like 1% or something. Take care.
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    Old 10-30-2004, 04:08 PM   #9
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    Re: Possible lupus?!?!

    Yes, Leslie, they also thought I was a "head case". Only one dr. more or less said that, but others just gave my those telling looks. Vastly annoying.

    I had a spasming bladder problem, too (urologists considered interstiail cystitis, another autoimmune). And 25+ years of irritable bowel syndrome (IBS), several times landing me in the hospital. About eight years into rashes about 4X a year, I was finally Dx'ed with SCLE = subacute cutaneous LE. In it, ANA is positive only about 70% of the time. Antibodies, if foud (again about 70% of the time) are Ro and/or La. 'Twas a brute to get diagnosed.

    Towards the end of my diagnostic journey, I was starting to suspect MS, due to dropping things, muscle weakness, balance problems, etc.

    Turned out lupus all along (they re-biopsied old skin rash punches that were 4+ years old---weird, huh?---and did new ones). I've done MUCH better on Plaquenil but have my moments.

    I think my mom probably had APS, but she never saw a rheumie. I was the first person in my family to see one & get help. I'm awfully glad you are trying new drs. You are so young and could spare yourself so much if you can get clarity now. From old Vee (a generation older, but feeling ancient today---must be the weather!)

    Last edited by VeeJ; 10-30-2004 at 04:09 PM.

     
    Old 03-11-2005, 10:17 AM   #10
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    Re: Possible lupus?!?!

    Hi!

    This message board is awesome!
    On February 2nd I was rushed to the hospital because I couldn't breathe. It turned out that I had pulmonary emboli (a blood clot in each lung). Since that time I am taking Coumadin and the doctor has done a series of blood tests. Some of the results came back last week and I was told by the doctor that the lupus anticoagulant test seems abnormal but she also said that the results were hard to read because they seemed unclear! She's the doctor! Damn! ....Sorry....need to vent.
    Now, I have so many questions...what the heck is lupus anticoagulant? I've checked it out online and I can't get all the info I need. Is it something we are born with? Does it entail lupus (SLE)? I wish somebody could give me some info...

    Thank-you for "listening"...

    Anita :-)

     
    Old 03-11-2005, 04:00 PM   #11
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    Re: Possible lupus?!?!

    Dear Anita,

    I just pulled out my handy-dandy lupus hardcover. Two are found in most bookstores, one by a Dr. Wallace & another by a Dr. Lahita. There are others, of course, but these two I know about.

    Anyway, "lupus anticoagulant" is an outmoded term from the late 1940's. It's now known as "antiphospholipid antibodies"; they are seen in about 1/3 of all lupus patients, and of those, 1/3 have "antiphospholipid syndrome", meaning complications from blood clots. FYI, the syndrome can also occur standalone in people *without* SLE.

    Wonder of wonders, AngelicBrat put up a "sticky post" (permanent post) on this syndrome. Look for it at the top of the thread list.

    Also of interest: the same world-famous British rheumie, Dr. Graham Hughes, who did the breakthrough work on antiphospholipid syndrome, is prominent in lupus, too. AngelicBrat put up two additional sticky posts just on lupus: one is the ACR (Am. College of Rheumatology) lupus diagnostic definition, and the other is Dr. Hughes's list of lupus "alternative criteria", compiled from his many years of experience.

    After you peruse those lists & search on the newer term "antiphospholid syndrome", post again, OK? It's awful---all this new info! It's the old "where to start???" problem... Sometimes it's easier to start with those basic lists & then expand from there with more questions/comments.

    Just curious: is this dr. looking into your blood results a cardiologist? A rheumie? A pulmonologist?

    Anyway, all best wishes. from Vee

     
    Old 03-11-2005, 07:42 PM   #12
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    Re: Possible lupus?!?!

    Hi Vee,

    Thanks so much for the info! Will definitely look into it under the more modern terminology.
    And, by the w ay, the doctor is supposed to be my haematologist...and here is the definition I found on the net of such a doctor's profession..."Haematology is the study of blood and blood forming tissues and the disorders associated to them."
    Scary huh? If she doesn't know how to read the blood results, then who does!!!!????
    I am going to call the hospital up after the weekend and demand some answers....I have been spending every free moment of my time researching this. There are so many possibilities!

    Thanks again for your help.

    Take care,

    Anita

     
    Old 03-12-2005, 06:22 AM   #13
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    Re: Possible lupus?!?!

    Dear Anita, Should I deduce from your spelling of "haematologist" that you are from the UK? If so, it may help to know the full name of a truly famous rheumie, which is [drum roll] Dr. Graham Hughes, head of lupus research unit, The Rayne Institute, St. Thomas' Hospital, London.

    Dr. Hughes has written books, too, FYI.

    Even if this specialist has umpteen thousand appts. per week and could prove impossible to get to see, I bet he has a whole raft of colleagues with whom he's worked over the many years he's been in the highest tier of his profession.

    I hope this finds you "off & running". Post more when you have some time, to let us know how you are doing, OK? Best wishes, Vee (with wire hair terrier wedged in chair behind me...again! Cannot breathe properly, but he's awfully endearing! )

     
    Old 03-14-2005, 11:49 AM   #14
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    Re: Possible lupus?!?!

    Hi Vee!
    How are you?
    No, I am not in the UK...however I do tend to spell alot of the words that I am unfamiliar with like the British....funny isn't it!?
    Actually, I am from Newfoundland (Canada) but I live in Montreal, Quebec (Canada).

    I have an appointment with my other Hematologist on March 30th. I am expecting some answers/explanations. I will keep you posted on what's happening!

    Take care,

    Anita xx

     
    Old 03-14-2005, 02:27 PM   #15
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    Re: Possible lupus?!?!

    I've been wondering if Hughes syndrome is what's wrong with me?
    I have every known symptom of MS, but no findings on MRI.

    I've been to a rheumie and he is running the necessary tests. I've never attempted to have children, but my mother has had a few miscarriages. None of my four sisters have, though (thank heaven....)

    I also have petechiae, purpora, raynauds and ibs. The skin symptoms seem to happen if I've had something tight around my arm or legs, but I also get the little petechiae on my face occasionally for no good reason. My platelet and wbc also have been low for unknown reasons. I also have weird scratches all over my back and abdomen. I don't know what these are from.

    My neuro symptoms are weakness, tremor, clumsy hands, dizziness, legs giving out sometimes, numbness, tingling, and my bladder is so irritable I can feel it burning most of the time.

    I also have aches/stiffness in fingers, carpal tunnel type symptoms, migraines, (since I was in High School,) heat intolerance, and generalized fatigue.

    I am (almost) hoping that this is what my doctor finds, because I've looked everywhere else. I've had MRI's, spinal tap, evoked potentials, etc-all negative, but I understand that Hughes can present as atypical MS-which is certainly consistent with my symptoms!

    I'm so glad that I read your posts-it gives me hope that there may be an answer for me soon.

    Does this sound like Hughes to you?

    Last edited by SuzU; 03-14-2005 at 02:28 PM.

     
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