Announcement

Collapse
No announcement yet.

I'm not sure what to think anymore.

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    I'm not sure what to think anymore.

    In the summer of 2009, I got a stomach flu for 2 days. After that, I started falling a lot. I got L'hermittes sign. I went to my family doc. She found I couldn't walk heel to toe and I had hyper reflexes in my leg. She said I should consider MS, especially since my grandmother was dx with MS in her 20s.

    I had a brain and cervical MRI, no lesions. I was sent to a neuro. Neuro threw the needles at my legs. It didn't hurt. Had a spinal tap. There were problems. He did a MRI of my thoracic spine. There were two large lesions. Long and thin over 2 or more vertebrae. He dx Devic's Disease or NMO. I was 42.

    I went on preventatives (Imuran, then Cellcept). I failed. They made me sick as dog and no help whatsoever. I tried Copaxone, just in case it might help. I failed. I did Solumedrol. I was a mess. I did IVIG. It worked for a little while, with no lasting result. But it's the only thing that gives me relief, even for a short time. Problem is: This disease does not look like Devic's. It is progressive. I don't attack and get better. I keep getting worse. My MRI's currently say there are no lesions, but there is still progression. It has been 5 years. There never have been brain lesions, only thoracic spine lesions. I have horrible clonic spasms in my legs, especially at night. I take Tizanidine or Baclofen. Depends on what works. I have started to have severe back and leg pain over the last few months. I can't stand for long. I can't sit for long. But I have never had a period of remission.

    I have gone without treatment for longer than I normally would because I have an appointment with a new neuro. I have thought there was something hinky about my dx for the last year, when the doc told me my lesions were gone, and my problems were caused by residual nerve damage. But there has been no stability, I have been progressively getting worse.

    The more I read about PPMS, I think that's what it is. But the genetic thing throws me. My grandmother acted exactly the same, as I remember. The leg jerking to give relief for the spasms, the inability to walk. I would like to talk to someone with PPMS to see if they feel the same as I do. Or to find out if anyone has experienced anything similar. I need some answers.

    ** 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
    Welcome WV Bulldog Mom: We are glad you found the site.
    I do not have PPMS, but I do have a couple of questions.

    1. Did your doctor do an antibody test for NMO?

    2. Have you talked with anyone who has NMO?

    The reason I ask is because your symptoms do sound like you could have NMO. NMO is a nasty disease and can be progressive in nature. However, I am glad you are getting a second opinion with a new neurologist in case they did not do the antibody testing.

    Take care

    Lisa
    Moderation Team
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

    Comment


      #3
      Yes, I had the antibody test and I am negative for it. The course for NMO, as I understand it, is that the disease has acute attacks and is not progressive in nature. And a lot of the symptoms I have are not traditionally those of Devic's. I am very interested to see what the new neuro comes up with. Basically, what I have done is get worse and worse until I wind up in the hospital with IVIG. It used to help a lot more than it does now. Now I have to do it every three months, used to be every 6 months, or 4. I have been involved with the NMO community since my dx and know some people who don't seem to think what I am experiencing is Devic's. Now that my lesions are supposedly gone, my disease keeps progressively getting worse. Neurological diseases are crazy, aren't they?

      Comment


        #4
        Yes, they can be crazy. I am surprised they went ahead and diagnosed you with a negative test. I am glad you have a second opinion lined up. Good grief, it sounds like you have been through it.

        I wouldn't read anything into your "just spinal lesions" at this point. Especially since you haven't collected a lot more. So, I doubt you have PPMS. RRMS can feel like you are never getting better, especially with spinal lesions as their symptoms may not abate after an exacerbation goes away.

        Just try to hang out and wait for the second opinion and see what they say.

        Take care
        Lisa
        Moderation Team
        Disabled RN with MS for 14 years
        SPMS EDSS 7.5 Wheelchair (but a racing one)
        Tysabri

        Comment


          #5
          Thank you. I'm going to see what happens. I am trying not to stress. It's kind of weird. When you think it is something, you kind of form your life around it. When you are not sure it is what you think it is, it feels like a total change of identity. I appreciate your input very much. It's helpful.

          Comment


            #6
            Hi Lisa,

            Re: NMO and progressive disease. Actually, a progressive course in NMO is exceedingly rare. The medical community is split. Some believe that the rare progressive case occurs, and others do not.

            WV Bulldog Mom, just Gracie here. :-) Keep hanging in there. Wait until you see Dr. H. and get his input. Have you already sent your records to the office? I've got my fingers crossed for you.

            Grace (NMO+ since 2005)

            Comment


              #7
              Hey, Gracie Girl! Thanks for keeping my chin up. Just trying to collect info. You know me. I like info.

              Comment


                #8
                I am new in here but I used MSword since I know computer...

                Comment

                Working...
                X