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    MS or Lupus? I'm so confused....

    I was diagnosed in December, 2009 with probable Primary Progressive MS. I have been to 3 different doctors, one including the Mayo clinic. I definitely have an autoimmune disease, but am now starting to question if it is actually MS. I was just curious if anyone else has had the same symptoms:

    About 10 years ago, I had a red, itchy rash on the back of my upper thighs that came only in the spring and summer and was brought on by hot water in the shower and when I sat on something warm or hot..etc, leather seats in a warm vehicle. (Not the typical butterfly rash on the face, but now has me wondering.) This lasted for about 4 years, no longer have it.

    Unexplained quarter size bumps only on the bottom of my leg that left a faint, red mark for months. The bumps no longer occur, but I still get unexplained faint, red marks that last a long time.

    Weakness in one leg that intensifies after exercise.

    Unexplained bruising

    Vision blurriness at times

    Muscle spasms in my leg, that intensifies with exercise

    Gait issues, I can no longer run normal. My walking is now with a "slight limp"

    Occasional fatigue

    Ankle pain that is worse in the morning after I wake up. It takes me a few minutes to be able to stand up straight.

    My memories of my childhood, high school, college, my wedding, and children's younger days is minimal.

    I also have a large hemangioma on my liver that may be caused by damage from lupus?

    My mother has a mild form of MS, so I'm afraid I am being lumped into a general category due to her diagnosis. I am now starting to question Lupus due to the unanswered rash from years past and the bruising, red marks on legs.

    I would have never questioned the MS diagnosis until I remembered these other symptoms a few months ago.

    Have any of you questioned your MS diagnosis? There is no medication that can treat primary progress MS, just taking medication to treat the symptoms. I just want to get the right diagnosis so I can get the right medical attention. There is definitely an autoimmune disease going on, just need to question my first diagnosis.

    Thanks for letting me ramble and vent!! I tried to make it short, but my brain wouldn't let me stop!
    Fall down seven times....get up eight!

    #2
    I have a lot of weird symptoms. About 10 years ago I broke out in hives daily with no known cause and went into anaphylaxis shock (sorry about spelling) three times. they stopped about 4 years ago but I do still get these body wide itchy spells that last for several days. No noticable red marks but could be because I am black.

    I also have a unexplained sleep problem where my brain spontaneously wakes up over 12 times a night even though it appears that I am asleep. It leaves me very tired all the time.

    I have lesions on my brain and the bands in the spinal fluid so I do believe I have MS. But MS alone does not explain all my problems. I think I have other autoimmune problems as well.

    I know this did not really answer your question but hopefully you know that you are not alone in this mess. ((((((HUGS))))))
    "Therefore we do not give up, but even if the man we are outside is wasting away, certainly the man we are inside is being renewed from day to day." 2 Cor. 4:16

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      #3
      Hello IowaGirl

      Sorry for the frustrations you're going through. Not easy. But I do believe that for the most part, we know our own bodies better than anyone else. If you feel there's something else going on, you won't be at peace until it's explored further.

      I've had PPMS for 11 years. Some of the symptoms you described are similar to what I experienced in the earlier stages. (I didn't experience any of the others, but maybe some people do) They are as follows:

      Weakness in one leg that intensifies after exercise.

      Vision blurriness at times

      Muscle spasms in my leg, that intensifies with exercise

      Gait issues, I can no longer run normal. My walking is now with a "slight limp"

      Occasional fatigue
      Hopefully you will find someone to take another look, just in case there is something else going on.

      Good luck and Best wishes

      Take care,
      KoKo
      PPMS for 26 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        Thanks for your posts!
        Earnellzwifey: I hope you continue to search for answers like I am going to continue to do! We have to be our own best advocate in our health issues!

        KoKo: Thanks for your posting on your symptoms, it sounds like we have many of the same. How fast has your symptoms progressed in the past 11 years? I know we are all different, but was trying to get a general baseline. What do you take for medications and supplements, if you don't mind me asking.

        Thanks again!!
        Fall down seven times....get up eight!

        Comment


          #5
          IowaGirl,

          It can all get very confusing!

          May be a stupid question, but have you been tested for Lupus?

          There are a number of blood tests that can quite accurately dx lupus, along with clinical evidence.. Antinuclear antibody (ANA), Anti-DNA and Anti-Sm, Antiphospholipid antibodies, Complement, ESR, C-reactive protein (CRP).

          Lesions on the brain can occur with lupus as well, but they differ in size, shape and placement from MS lesions.

          Have you been tested for Lyme Disease? Advanced Lyme can involve the CNS and mimics MS and Lupus. Rashes of various sorts and easy bruising are often found in Lyme. Lyme is dx by a blood test as well.

          It is possible to have more than one autoimmune disease.

          Hope you find the answers you are looking for.
          skeezix
          dx. rrms Nov/09. Not using DMD's.
          Life is too short to wear boring socks.

          Comment


            #6
            The red rash on your lower leg almost sounds like erythema nodosum; you can read about it on Wikipedia. I can't include a link yet, or I would.

            It can be a symptom of sarcoidosis, which is an autoimmune disease, and neurosarcoidosis mimics MS and can be misdiagnosed as that, from what I've read. Sarcoidosis can also appear in the liver, and it can cause rashes. It usually affects the lungs first, but a lot of people have no lung symptoms, and some have no lung involvement at all.

            Comment


              #7
              IowaGirl: I feel your pain. I also have MS and Lupus. Strange huh? It is so hard to differintiate (sell check lol) between the sx. I was dx'd with MS with Lupus like sx. Then a few years later I did receive the definate Lupus dx. If you want to talk or whatnot send me a message. I have a terrible headache right now and I have to find something to deal with this.
              I am a phenomenal woman; and still I rise.

              Comment


                #8
                Hello IowaGirl

                You asked about the progression of my PPMS. I'll try to keep it brief. And remember, this is only my experience, not necessarily yours or anyone else's

                Was diagnosed in 1999. Main issues in the beginning were leg weakness, abnormal gait, bladder frequency and urgency, heat intolerance, arm weakness, fatigue, blurry vision after physical exertion, L'hermittes.

                Was able to work for 5 more years at physical job, doing light duty for a couple years before retiring on disabilty.

                Needed a leg brace after first few years, then a cane for balance issues, and now a rolling walker (cane for short distances). Still driving. Have exercised throughout, but gradually unable to tolerate as much.

                No DMD's. Have used Detrol for bladder issues, Zanaflex for muscle spasticity, Provigil for fatigue. Have gone off of these drugs for now. Detrol didn't seem to help anymore, Zanaflex made me too weak and drowsy, and Provigil made me too hyper.

                I take Multi-Vitamins, Calcium, Vitamin D3, Fish Oil, and Cod Liver Oil. Recently started taking Alpha Lipoic Acid and Acetyl L-Carnitine. It has helped my fatigue and bladder issues.

                Feel free to ask anything else.

                Take care,
                KoKo
                PPMS for 26 years (dx 1998)
                ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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