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Hello, in limbo and very confused!

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    Hello, in limbo and very confused!

    My name is darla and I'm 32yrs old. Im not even sure I should be here, so I guess that's why I'm here! For many yrs its been thought that I have lupus or another connective tissue disorder, although not dx'd with any one thing, but about 20 things. So to make things short, I have been adamant tha there's something wrong and pushing for answers. This whole time I've thought it was along the lupus line, until 3 days ago.

    I recently joined a lupus forum, and when giving my symptoms, someone asked "have you ever been checked for ms?", I said "no, why? Do these sound like ms symptoms?" before I got a reply, I immediately looked up ms and the symptoms and I was shocked to see that yes, I have many of them! I was most recently dx'd with peripheral neuropathy and put on nuerontin. My pcp said she was going to send me to a rheumy. I left her office, excited tha maybe the end was near.....well the rheumy called to schedule and the next day I got a call from a neuro saying they were following up on a refferal, so I scheduled with them as well (both are at Dartmouth Hitchcock medical center and apts are piggybacked) but I didn't know why I was seeing a neuro, I chalked it up to the recent neuropathy. Then, I saw the symptoms. I've come to realize that yes,maybe I am going for the neuropathy but I think it's more then that.

    I know bot ms and lupus are great mimicars of each other and other illnesses, I've also learned you can have both together. I do have any ms symptoms but a biggie is I've had 8 pregnancy losses due to antiphospholipid syndrome, which is most commonly found in lupus. Thad the only symptom I can differentiate. Other then that, a lot of my symptoms, you *can have w/lupus but are ON the list.

    So here I sit, in pain, depressed and utterly confused! So I decided to come here to get some input. I'm seeing my pco today for the neuropathy follow up, she's not aggressive at all and I want(NEEED) her to be. I'm not sure if I should bring in a symptom list (she already knows most) and just say how I feel or wait for my apts at Dartmouth, though I am going to ask about the neuro refferal!

    My symptoms are as followed (in no order)
    Neuropathy
    Depression
    Anxiety
    "brain fog"-forgetfulness, can't find the right words and often say things like " you know that thing that's white, and you put food into to heat up" ohhh yeah microwave etc etc
    Extreme fatigue
    Joint and muscle pain/swelling
    Occasional nighttime incontinence
    "eye floaters"
    livido reticular is rash
    Headaches
    Chronic constipation
    Muscle twiches (calfs, eyelids, but ect)
    Alopecia
    And a few other minor things that my brain won't giv me at the moment

    So as you can see, there's quite an array! I'm hoping someone will pipe in with their 2cents as it's worth a million bucks to me! I've educated myself about lupus a Lot, but no nothing of ms, and I'm very scared!

    I ow your not docs, but in your opinion, do I have enough symptoms that ms is a possibility? Or do you think, no way...this girls crazy, it's either lupus or "over reacting!"? Also, how should (if) I approach my pcp today?

    Sorry so long, thanks for reading and have a great day!

    Darla ~forever awaiting answers~

    #2
    Oh I've remembered some, very sensitive to heat! I can not stand being outside in the heat, get nauseous right away, and tired! Also don't like bright lights (sun, computer screen sometimes) hurts my eyes!

    Lack of coordination, always tipping, or mis stepping, stubbing toes etc....

    Comment


      #3
      DeeMarie123

      I hope I got your online name right. I just joined this sight sort of for the same reason as you. Even though I already know I have MS, I was diagnosed in 2001. But it doesn't make peoples' feelings any easier. In answer to your questions, some of the things you describe do sound like MS. Especially the sensitivity to heat and your walking problems. Also incontenence can be a related problem.

      It took me quite a while to find out what was wrong with me. I had foot surgery because I thought that was my problem. After the surgery, I still had problems walking. To make a long story short, I think many people could have MS for a long time before they even know it. I call it my uninvited guest. It totally interrupts a person's life. However, there's strength in numbers, so we all have to stick together and fight this disease. There has to be a cure.

      Meanwhile, the pharmaceutical companies are making a fortune on the medications that we need to take. In the meantime, good luck at the doctors. You may find you don't even have it. The best way to tell is to have an MRI. You're too young to have so many health problems. I feel bad. Keep in touch. Let me know how you make you.
      Sincerely,
      Barbierow


      ** 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. **

      Comment


        #4
        I see that you have many of the same symptoms that are shared by many of us here. You have not had very good experiences with the doctors that you have consulted, thus far. I hope you realize that there are a few tests that need to be done to garner a diagnosis of MS.
        I don't understand why you have not had several MRI's. They are critical as a diagnostic tool. Have you been tested for Lyme disease? What is your vitamin D level? Have you been tested for vitamin B-12 levels.? Have you had your hormone levels tested? Hormonal imbalances cause havoc on a person's physical and mental health. You could also have some really nasty food sensitivities. If you consume any dairy, like butter, milk, cheese, cream etc., you can suffer major constipation from those foods. I wish you good luck

        Comment


          #5
          Thank you! I have had my hormones tested, not al, also my b12 is as well. Living in new Hampshire were all a little vitamin d deficient t mines not major. I dont think the food issues are the concern. I don't eat a lot of dairy, I used to eat tons and was never constipated. But now I'm constipated all the the it seems with or without dairy

          Again, thanks for the responses....I'm hoping to have an MRI done soon, before I see the neuro so e will have answers then, I hope....


          Darla

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