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    Old 05-09-2011, 05:55 AM   #1
    coldtoesinmi
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    Does this sound like you or Lupus???

    My story is rather long so I will attempt to keep it as short as possible. It all started 11 years ago with a headache that would not go away, I was sent to every specialist know to man I think and everything was inconclusive. I tried no less than 50 medications to control the headaches, but to no avail. I was placed in the hospital for 3 days to "Break the migraine" and was placed on Solumedrol IV for 3 days and left with a headache, it did not help. I used a titration pak to come off the IV steroids and that was that. Fast forward 2 years and we move to Michigan.. In transit I begin having issues with my bowels. PLEASE DONT BE OFFENDED... They became filled with mucous and nothing else, no stool. That goes way after about 1 month and I begin the DR search in a new town. I find and go to no less than 5 Neurologist for the headaches and they all say "Don't know" at this point I have been on meds from Darvocet to Vicoden to try and make it through the worst of the headaches. About 6 years ago I begin to have a severe pain in my hip and down my leg and I was sent to a Physical Rehab specialist and he watched me walk and immediately put me on a cane and told me to get a bone scan. I did and read the radiologist report in the car to see at the bottom POSSBLE AVASCULAR NECROSIS. I began to research before I ever got to my Ortho appointment. He DX'ed me with the AVN and told me to walk on crutches at 50% weight bearing and come back in 8 weeks. Well my research showed that it is very progressive so I went to my family DR and requested a visit to the University of Michigan. I got in 3 weeks later and was again told it was AVN and had progressed from the previous X-Rays and to go on crutches no weight bearing until they could get me into Duke University for a Free Vascularized Fibular Graft. It took about 2 months to get me in, but that June I had the surgery in North Carolina dn it has been a complete success. So far so good... The R's at Duke were a bit confused as to the cause of the blockage to begin with because I had no risk factors at the time, just that short stint of Solumdrol and the titation pack. Well I come home and it takes about 6 months of wheelchairs, then walker, then crutches and finally a cane, but I then could bear all weight. So the Dr's never had an explanation what caused ti to begin with. Well the headaches persist through all this and about 2 years later I FINALLY go about 3 hours away to a headache specialist and was diagnosed with New Daily Persistent Headaches. I had been taking no more than 2 pain pills daily, but they wanted me to check into their headache unit to determine further issues. I went in for 3 weeks and left with a headache and having been put on IV's so they could change the med combinations more quickly to try to find a combo that worked for me. They never did, they did find that Methergine helped the most, but it is hard on your lungs and heart. While I was in there they did a Spinal tap ( Lumbat Puncture ) and I was told you can go home your spinal fluid is not elevated so that was ruled out as to why I had the headaches. I continued the Methergine for a while then as I read about the side effects I choose to contact them and let them know I was wanting to come off. They did allow it as I had been on it longer than they liked and wanted me to take a 6 month break.

    Well I am beginning to notice that I am stumbling and n ocassion my legs wont hold me up. I just crumbled to the ground day at work as I stepped down a step. My memory began to get really bad and I was in a state of Brain Fog all the time. I get a letter from the headache Clinic telling me I had elevated Oligiclonal bands in my spinal fluid and it was probably MS. I was told to find a specialist immediately. I did, I found 3 and all 3 agreed that I had signs and symptoms of MS, but since I did not have lesions on my brain or spine it could not be that. I get very frustrated and end up at a Rheumatogist office where he runs a bunch of test and all come back negative including ANA. he DX'es me with Fibromaylgia and Central Nervous Systems Syndrome. I go on about my life with the weakness, falling , headaches and such. I happen into a new Neuro who does a pile of blood work and says to me that I have Iron Deficient Anemia and have for years.. ( I get all my reports from Dr's and hospital stays so he was able to look at previous labs) he immediately schedules me for 5 Venofer treatments to boost my blood and ot worked for a while then I was becoming anemic again. They ruled out all reasons and settled on my terrible periods and the massive bleeding. I was scheduled for a hysterectomy and they found some bad tissue in the lining and walls of the muscle of the uterus. Well that is done and I am still having awful headahces.... I now have what are called Ice Pick headaches in addition to the regular headache I have almost daily. I request a second Lumbar Puncture to finally rule out MS and it comes back "Normal" but I still have 3 O-Bands showing. I finally get sick and tired of all the running and go to my regular Dr and he gives me some pain pills to help with the headaches that just are unbearable. I go like this for some time, but my "MS" symptoms are getting progressively worse. I see another Neuro, one who has been in practice forever thinking maybe I am in the 10% of MS patients that dont show lesions.. he says I would DX you with MS except for thse clean MRI's. I get upset and say I want another Lumbar Puncture to check on the O-bands, he agrees and also does test to rule seizures disorders and a some blood work to rule out some odd untested for diseases. My Lumbar Puncture comes back with 2 O-bands, I ask the Dr id=f it is not MS then WHAT IS IT? Something is causing my spinal to keep showing these O-bands and they average human has ZERO and yet I have had 3 tsts that are showing them. he sends me to Pain Management for the 2 herniated disc they discovered one of the MRIs an that Dr. did nerve conduction studies and my arms were normal.. I started crying and he asked what was wrong. I asked if it is normal why can't I keep my arms up long enough to wash my hair or why cant I climb up the l bleachers at my daughters competitions. he said he did not know but he thought it might be something his wife had had many years ago and it turned out to be a parasite just trashing her body. So he sends me to the Infectious Disease DR his wife saw and the minute she saw my records she said this is MS, why are you here? I explained and she said that since I had driven 3 hours she would run some basic test, but she expected them all to be normal. I tested negative for Lymes Disease and Syphilis along with about 10 other infectious diseases or critters. I come back home and go to my Neuro at the end of my rope and he says "He does not know is wrong with me"

    I begin digging on the internet and see that Lupus can cause Osteo Necrosis and has very similar symptoms to MS with positive spinal taps, but clean MRI's, I read that it can affect the blood and Anemia is the result. Both of which are in my little arsenal of known issues.. I feel like I have been run over by a truck most all the time and I am so tired I fall asleep while driving or sitting on on place too long. I have NuVigil to help if I have to drive more than 10 minutes away. I have awful insomnia so that does not help the sleepiness. Now my stomach issues have returned with a vengeance I look pregnant and the gas just rolls around like I am carrying a 7 month baby in my tummy. You can see my stomach move and it is loud, like hunger pains but much worse. I have to leave church due to the noise my stomach makes.. I DO NOT pass gas, it just stays in my stomach and I have the diarrhea feeling, but it is just mucous again. It will last for 3-6 weeks then go away. I have a numb patch on my back that comes and goes. I am ALWAYS cold and this winter I noticed my fingers turn white when I am in the cold, especially one. I have many other symptoms that are to vast to list, but ,memory issues and fatigue are the worse. Next in line is the weakness. My last blood work came back with a faint positive ANA which have always been negative. I have a family history of Fibromyalgia and my Mom has Dermatomyasitis. The MS Dr;'s are convince it is not MS, so what is wrong with me?????? Does it sound like I need to pursue Lupus to you all?? I am looking into going to The Cleveland Clinic for some answers. Thank you for reading this incredibly long post.....

     
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    Old 05-09-2011, 05:45 PM   #2
    VeeJ
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    Re: Does this sound like you or Lupus???

    Coldtoes, hi & welcome. Yikes, you've been thru the wringer! Have you read the "sticky posts" = permanent info posts at the top of the thread list? I'm just a patient, but I'm wondering if you were tested for SPECIFIC AUTOANTIBODIES, both for lupus and for APS (antiphospholipid syndrome).

    In my experience, doctors place huge faith in ANA. Yet ANA may wax & wane with flares. Also, in one presentation of systemic lupus, called Ro-lupus, patients remain negative for ANA but are positive for anti-Ro. However, Ro-lupus is rare, less than 5% of all SLE.

    When you describe your fingers turning white in the cold, makes me think of Raynaud's syndrome. I think Raynaud's can occur standalone, but also as part of APS.

    As for headaches, I believe both lupus and APS can be causes, but obviously many other things can, too...

    I had decades of terrible GI problems, very mucous-y. Have you had a colonoscopy, to rule out inflammatory bowel diseases, such as Crohn's and ulcerative colitis? I had many such tests---ugh---but they never found signs of inflammatory bowel disease & I was told cause was Fibromyalgia. Well, ha! In my 40's I finally got lupus-specfic skin rashes, and was eventually dx'ed with SLE. Amazingly, my GI problems stopped once I started Plaquenil.

    Another thought about GI issues: was Celiac disease considered?

    If I were you, I'd want MANY autoantibody tests run, whether your ANA was negative or weakly positive. By "all sorts", I don't mean just the handful of autoantibodies that are included in the diagnostic criteria for lupus and APS. I mean ALL, because there are MANY MORE autoantibodies possible in lupus & its close cousins that don't make the list, only because they're not "specific" to lupus & APS.

    I'll quit for now, ao you can review the stickies. Then I hope you post more, OK? Bye just for now. Very sympathetically, Vee

     
    Old 05-10-2011, 04:04 PM   #3
    coldtoesinmi
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    Re: Does this sound like you or Lupus???

    Yes I have been tested for Celiac's and it was negative... I have never had a colonoscopy.. I was thinking I had Fibro all these years but it does not account for the positive spinal taps... I am at a total loss, I have made an appt with the Rheumy who dx. my Fibro for next Wed.... he can be a hard*#, if you know what I mean. Any specific test I should ask for???

     
    Old 05-10-2011, 04:48 PM   #4
    brooklyngirl
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    Re: Does this sound like you or Lupus???

    I really hate it when doctors can't get a positive test so they just diagnose fibromyaglia, my first rheumatologist did that to me even though I have no muscle pain or tender points (I also fired her after only two months). I actually have SLE and Sjogren's but needed to be tested differently (lip and skin biopsy) and those came back positive for both and yet my ana is still negative (all blood tests are still negative). I completely understand your constand headaches, I think my headache started when I was in sixth grade (31 now) and never stopped, just the severity changed daily. The migraines are the worst as nothing helps until I throw up or if I can get to the doctor for a shot. I also had many tests to find the cause of my headaches (its the SLE and herniated discs in my neck) and for years suffered because the doctors did not believe me. I have similar (but not nearly as severe as you) GI issues and don't know if I hate the headaches or GI more. I also get the cold white hands its raynaulds, very painful in the winters in Brooklyn. You seem to have a lot of SLE symptoms but also a lot of MS. I wish doctors would treat people by symptoms instead of stupid test results that are inaccurate and unreliable anyway. Perhaps you could ask one of the doctors to try you on a medication for SLE or MS for a short time trial period to see if you have any relief. I have awful joint pain in my hands and feet (which makes it difficult bc we walk a lot here) and its worse when I go outside and forget my sunblock and hat. (I love going to Jones Beach or the Jersey Shore but now have to stay under an umbrella the whole day or I pay for it.) Good luck on your search for a diagnosis and if you get any rashes maybe you can get a biopsy like I did and hopefully get some answers.

     
    Old 05-11-2011, 07:34 AM   #5
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    Re: Does this sound like you or Lupus???

    Coldtoes, I know so little about MS, but like you write, it's horribly confusing that you've had three spinal taps that showed O-bands, yet your lack of brain lesions seems to point your drs. away from MS. Have you talked to others diagnosed with MS, to ask which tests nailed down *their* diagnoses?

    In your shoes I'd visit my local library. (See the "sticky post" on reading resources.) What you're looking for: books with long list of autoantibodies possible in lupus & APS. Also, look for lupus books that discuss CNS (central nervous sytem), and also discuss OTHER diseases & conditions that can cause some of the same symptoms, such as CNS vasculitis, antiphospholipid syndrome, hyperviscosity syndrome, lupus headache, lupus myelitis, etc. Also, maybe MS books state whether O-bands are seen in any diseases besides MS! Keep us posted, OK? Thinking of you & sending my best, Vee

    Last edited by VeeJ; 05-11-2011 at 07:51 AM. Reason: added sentence

     
    Old 05-11-2011, 05:40 PM   #6
    coldtoesinmi
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    Re: Does this sound like you or Lupus???

    Hi guys.. O-Bands can be found in MS and Cystic Fibrosis and several other diseases including Lupus, I now find out. I do not have the rash tho.... I will continue reading and hopefully my Rheumy wont blow me off...

     
    Old 05-12-2011, 04:46 AM   #7
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    Re: Does this sound like you or Lupus???

    Coldtoes, after I read a bit, I also saw hints that oligoclonal bands aren't unique to MS. (Confusing, huh?)

    RASHES. You don't have to have a rash to have lupus. The sticky post conveys how the ACR criteria are generally used by drs: need 4 (or more) of the 11 to support a diagnosis of systemic lupus. Further, you may meet criteria over time (as opposed to simultaneously). As my rheumatologist explained, envision checking each off, in indelible ink.

    BLOOD TESTS. Hopefully your new rheumie will run all sorts of SPECIFIC autoantibody tests, since ANA is only a threshhold test (because it's positive in a number of diseases & thus isn't considered diagnostic). For example, here are some seen in lupus (list probably isn't complete): anti-ds-DNA, anti-histone, anti-Smith, anti-RNP, antiphospholipid, anti-Ro, anti-La, anti-ribosomal P, anti-erythrocyte, ANCA, anti-lymphocyte, anti-platelet, anti-neuronal, and rheumatoid factor.

    Now look again at the ACR criteria for SLE. Only several above "make" the criteria list, because only they are considered "specific" enough to be on the list. (Another illustration: I was positive for anti-Ro, seen in both lupus and Sjogren's, so it's NOT on the list.)

    Hope something above helps you as you read. Keep in touch, OK? With my best wishes, Vee

     
    Old 05-08-2012, 10:30 AM   #8
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    Re: Does this sound like you or Lupus???

    New to this thread-- tested once for LUPUS and I understand that it's very hard to catch the lupus more than once. I have spells where in a I hurt all over. Had ABS, but that has subsided for now. My wonderful GP gave me Kenalog shots about once a month for about six to eight months and the symptom got much better and I actually had a recession of the disease. I now feel horrible, but have other problems which are just as bad. Anyway, there was a question about celiac. My grandson has celiac and the children's hospital did numerous upper GI and colonoscopys in order to dx his. All that I know have had to be dx'd this way. Hope this helps. Moppethead

     
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