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And so it continues....

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    And so it continues....

    Here's my back story:

    Have had lupus since June 2003.

    Have protein S deficiency and other fun stuff too.

    Lupus Blood work ALWAYS come back fine.

    Allergic to all steroids (psychiatric reactions). Husband has complained for the last few years that I have been communicating worse, but friends say I'm fine. I thought he was just being a jerk (haha!)

    Multiple flares, but here is the important one. Major flare in winter of 2011 and I started to have these "short circuits". I had muscle weakness and loss of feeling in my hands and feet. Neurology said there was no neuropathy from EMG, BUT I did have abnormal wave function (I think that was it). The headaches also happened. Command of memory and speech was impaired and I was couldn't find the right words. Dr pawned it off to having 2 young children and me being a tired young mother (29 yrs old at the time)

    Muscle biopsy indicated inactive muscles even though I worked out (with a trainer) 2-3 times a week. Dr didn't investigate further. (Although now I wish she would have. At the time I was tired if all the testing). She prescribed gabapentin and covered any nerve numbness symptoms I had.

    Fast forward to Sept 2012. Lupus had been fine and only minor/mini flare hiccups. Started noticing vision loss so go to eye dr. Noted true loss an sent me to retinal specialist. All was fine. Ended up making me stop wearing contacts and inflammation went down a vision returned (albeit not perfectly, but better than before).

    Lupus (i thought) began simmering in other ways (fatigue, pain, stereotypical lupus ways). I ended up being put on progesterone for endometriosis pain. It caused a major depressive episode (I'm already on Zoloft for bad PMS) and i stopped the medication immediately. Around Thanksgiving I began to "short circuit". Hubs would say stuff to me and I wouldn't remember the conversations or process it.

    I rallied and got through the holidays but since my progesterone meltdown I didn't feel mentally intact and felt like a flare was brewing. Family got sick with the flu and I ended up being caregiver and that kicked me over into this current major flare.

    Vision started messing up again. Headaches.
    Rashes.
    Horrible fatigue.
    Can't feel my fingers and toes. Everything tingles when I wake up.
    Comprehension and word reaching. Everything seemed spelled wrong. (Thank God for autocorrect)
    Joints horribly swollen (had to get all jewelry off)
    Feelings in hands and feet are gone again.
    Raynaud's.
    Hair loss (including eyebrows and lashes)
    Back pain.
    Concentration missing.
    Dizzy.
    Fever.
    Weight fluctuations.
    Mouth sores.
    You get the idea.

    Go to the rheum she says I'm in major flare and doesn't know what to do because I can't take steroids. She wanted to do a steroid shot but can't. *I* have to suggest meds like Benlysta or Cellcept (had bad reaction to imuran and Sulfasalzine in past). She says those are great ideas and we'll see what blood work says.

    As usual, blood work is fine and only trace protein in urine. Dr emails me saying "Maybe low dose of a imuran. If not go see my internist". I was upset. I KNOW this is not normal. I've had it almost 10 Yrs I know what it feels like to flare. Something isn't right. It feels like 2 yrs ago, but worse.

    So I go to a second opinion. Had appt and I could barely understand what was happening. In fact, I forgot to tell him other meds I was on, what med issues I've had, and I misunderstood what words he said (ie: when talking about pleurisy he asked if I hurt with exertion and I thought he said exhalation. So I said no. Only the next day I realized I thought he said something else!). I had to email the nurse with everything I screwed up in my appt. making me feel like a total .

    He also decided to do neurocognitive testing. He asked me questions and I felt so stupid because I misunderstood the questions!! (I know I am very smart and have never felt this handicapped). He is also having X-rays of all my joints.

    After reading a bit I am starting to get more mad at my first rheum. She should have done the cognitive testing last major flare. This is not normal. Collapsing and being dizzy is not normal. Losing vision and everything being blurred. It feels like I can't see....but if I concentrate....I realize it's actually clear. Does that even make sense?? Messing up how I speak (my sentences get all jumbled and the words end up in the wrong places). Stuttering or tripping over words is not normal.

    THEN found out on Wed older half sister (I never speak to her....haven't in over a decade) has MS after a friend mentions my symptoms are starting to seem like MS and I mention it to my little sister

    At neurocognitive test, the dr immediately told my new rheum that with my language and verbal issues and my sister'a history that I need a brain MRI. I get a brain and c- spine and t spine MRI on Monday. Another emg is scheduled for thurs.

    I feel like I'm losing my mind.

    Oh and lupus blood work is clear....again. Only elevated igM and low C3. (And low vit d at 30 so not too bad)

    More I learn the more certain this is it and the more all of this makes sense for the last few yrs. If it is MS, I can bet you all of my money, that that's been my problem for the last few years, but they've all been stuck on lupus!

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

    #2
    Wow! You have got a lot going on. What day did they do the MRIs? If it was just Friday, you will have to wait and see if they call you on Monday, or call and ask if you can go pick up your MRI results. This way you will know what the radiologist saw and which way he/she is leaning. They will usually say if it looks like MS or not. If it was done before Friday, and they didn't call you, you can breathe a sigh of relief. No call is good news. Still call and get your result because most neurologists don't call back with normal results.

    Good luck, let us know how it goes.
    Lisa
    Moderation Team
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

    Comment


      #3
      My MRI is on Monday at 7am. Yay me. The EMG is Thursday. I'm hiding in a dark room with a migraine. Ice pick feeling in my right eye so I have it buried in a pillow and I'm reading with only my left haha.

      I call uncle.

      Comment


        #4
        Originally posted by Ferrariangel View Post
        Here's my back story:

        Lupus Blood work ALWAYS come back fine....

        Vision started messing up again. Headaches.
        Rashes.
        Horrible fatigue.
        Can't feel my fingers and toes. Everything tingles when I wake up.
        Comprehension and word reaching. Everything seemed spelled wrong. (Thank God for autocorrect)
        Joints horribly swollen (had to get all jewelry off)
        Feelings in hands and feet are gone again.
        Raynaud's.
        Hair loss (including eyebrows and lashes)
        Back pain.
        Concentration missing.
        Dizzy.
        Fever.
        Weight fluctuations.
        Mouth sores.
        You get the idea.
        First question: Why would they dx you with Lupus if ALL the bloodwork has come back fine. Have you ever had a positive ANA test which is 99% accurate for Lupus?

        Also, Lupus can attack any system/organ of the body, including your brain. I have a friend with Lupus with CNS involvement, and so has MANY similar sx to MS. However, usually, MS does not commonly present with skin sx such as rash, mouth ulcers, hair loss, or rheumatic type of swelling and pain in joints. All the other sx you list above can cross over between Lupus and MS.

        So, it actually does sound more to me like you have Lupus because of the skin and joint issues, and that Lupus probably has affected your CNS to cause the other MS-like sx.

        It is also possible that you have more than one auto-immune condition, which is common as well. So you could have Lupus, MS, Becets, Sjogrens, etc. etc. making it all the more difficult to get a dx. I just find it strange that you would have been dx'd with Lupus if there were no blood tests to indicate, since Lupus can be tested for.

        Anyway, good luck with finding answers, and mostly with finding something that you can be treated with besides steroids.
        20+ years of sx - no dx yet - getting close!

        Comment


          #5
          Sounds like Lupus to me

          Hi,

          I also think your symptoms sound just like Lupus, I have a positive result on my ANA test Titre 1:80 Speckled pattern, they are sending me to a Rheumatologist to rule out Lupus next month.
          But because my symptoms are not the typical Lupus symptoms (no rashes, ulcers, or anything else..) they are sending me for an MRI to check for MS. Most my symptoms are more consistant with MS (fatigue, eye pain, tingling numbness, cognitive difficulties, urine leakage, muscle spasms, no knee jerk reaction ect. ect..)
          But having said that, they still aren't sure because of the weak positive result on the ANA.

          Have to wait and see I guess.. the next couple of months will tell.

          Comment


            #6
            Originally posted by HellsBells1 View Post
            First question: Why would they dx you with Lupus if ALL the bloodwork has come back fine. Have you ever had a positive ANA test which is 99% accurate for Lupus?

            Also, Lupus can attack any system/organ of the body, including your brain. I have a friend with Lupus with CNS involvement, and so has MANY similar sx to MS. However, usually, MS does not commonly present with skin sx such as rash, mouth ulcers, hair loss, or rheumatic type of swelling and pain in joints. All the other sx you list above can cross over between Lupus and MS.

            So, it actually does sound more to me like you have Lupus because of the skin and joint issues, and that Lupus probably has affected your CNS to cause the other MS-like sx.

            It is also possible that you have more than one auto-immune condition, which is common as well. So you could have Lupus, MS, Becets, Sjogrens, etc. etc. making it all the more difficult to get a dx. I just find it strange that you would have been dx'd with Lupus if there were no blood tests to indicate, since Lupus can be tested for.

            Anyway, good luck with finding answers, and mostly with finding something that you can be treated with besides steroids.
            My ANA has come back positive, but the blood work that indicates lupus activity is fine. Also, ANA is positive in 20% of the HEALTHY population.

            I do have lupus, but since any blood work that indicates that this current flare would be active lupus has come back negative they are beginning to think that it's not lupus. In fact, they think that I may have a small lupus flare (as in it's not quite active enough for blood results to show or for the symptoms to be this significant).

            My guess is I've got both.

            Comment


              #7
              Originally posted by Andie31 View Post
              Hi,

              I also think your symptoms sound just like Lupus, I have a positive result on my ANA test Titre 1:80 Speckled pattern, they are sending me to a Rheumatologist to rule out Lupus next month.
              But because my symptoms are not the typical Lupus symptoms (no rashes, ulcers, or anything else..) they are sending me for an MRI to check for MS. Most my symptoms are more consistant with MS (fatigue, eye pain, tingling numbness, cognitive difficulties, urine leakage, muscle spasms, no knee jerk reaction ect. ect..)
              But having said that, they still aren't sure because of the weak positive result on the ANA.

              Have to wait and see I guess.. the next couple of months will tell.
              Thanks. Like I said above, the ANA is positive, but there is no current blood work showing that my lupus is significantly active which is why they are looking into the MS possibility.

              Comment


                #8
                Originally posted by Ferrariangel View Post
                My MRI is on Monday at 7am. Yay me. The EMG is Thursday. I'm hiding in a dark room with a migraine. Ice pick feeling in my right eye so I have it buried in a pillow and I'm reading with only my left haha.

                I call uncle.
                Your weight fluctuations may be caused in part by the ganpentin (neurontin). This drug caused weight gain for me.

                Comment


                  #9
                  Two AI Diagnoses w/possible third

                  Just thought I'd share that I was diagnosed with lupus about 30 years ago (I was 27). I had bad symptoms, high ANA and other positive blood tests. About 15 years ago started experiencing left side weakness and balance/coordination issues. Referred to neurologists since that time who were unable to confirm what was going on with me. I had some brain lesions, but they thought it was possibly CNS lupus. Last year demylination in my cervical spine, more lesions and positive lumbar puncture confirmed MS.

                  Now my rheumatologist says maybe I didn't have lupus since my ANA is low abnormal and other blood tests are normal except for high Sjogrens Syndrome titer, which I have no symptoms of.

                  I am absolutely certain of my lupus diagnosis, but unfortunately I didn't bring medical records from the early days with me when I got divorced (stressed and stupid). I was actually relieved when I got the MS diagnosis as it explained many symptoms the drs. couldn't explain before. Hopefully the Sjogrens won't ever fully develop.

                  I don't think there is any correlation, but I also have severe diverticulitis with colon perforation requiring surgery. Anyone else had this problem?

                  Doing pretty well now after a dismal health experience last year. I did get approved for SSDI last year. I figured it was time to take care of myself now after working all my life. Money is tight, but I'm feeling better without all the stress of working FT.

                  Comment


                    #10
                    And so it goes on.....

                    Comment


                      #11
                      Round 2...or is it 3 or 4??? LOL

                      So....you can get my back story here: (definitely read it so you have a solid idea of my annoying story haha!)

                      Here's this chapter:

                      Vision issue has continued but it's just been irritating. Never fully recovered from the vision loss, but it was better than before. Better means a win, right?

                      Wrong.

                      Last week I noticed it acting up. Keeps getting worse. Finally on Tuesday I notice that I can't see out of my left eye...except, when I close my eyes, I can! Say what?? So...I mention it to my husband. Wednesday everything seems duller and I definitely am starting to not see.

                      By Saturday, I lost 50% of my vision. I call an ophthalmologist (I just moved Sept 5th!) and tried to get an appt in for this week. They told me to drop everything and come now. My husband was out of town, 5 year old at baseball, and 3 year old in tow.....I can't! I didn't get a choice. Neighbor got the kids, I rushed to appt.

                      Doctor looks. Does a few tests. He asks me if anyone in my family has MS. My half sister does. He shakes his head. I have optic neuritis and he wants a MRI. I try to argue with him because I had the MRI in Feb and it came back clear with no brain lesions. He said it didn't matter and we need to do it. He wants to check for lesions.

                      AND he wants to give me steroids. I'm allergic to steroids. He calls neuro-ophthalmologist and he says that steroids only accelerates recovery, but doesn't change outcome.

                      He tells me to have MRI on Monday and see neuro-ophthalmologist on Friday.

                      Full vision gone since Sunday.

                      Had MRI on Monday and see the neuro-ophthalmologist on Saturday morning.

                      I'm starting to think...if it waddles...has feathers...and quacks....it's probably a duck.

                      Comment

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