Announcement

Collapse
No announcement yet.

Transverse myelitis and burning?

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

    Transverse myelitis and burning?

    I had a mega infection 2 weeks ago. This past week, I woke with a parasthesia across my upper abdomen, but only in reaction to clothing brushing up against my skin. It's like sandpaper on skin or a bad sunburn. Hot bath, skin contact, even a heat pad has no effect. Gets a bit better if I take my full prescribed dose of Neurontin (prescribed for nerve pain arising from spinal stenosis in my cervical spine). But by no means gone.

    Debating whether to talk to my neuro, since he never takes any symptoms that I mention seriously or attributes them to a medication. For example, falling asleep while actively engaged in a conversation at work, acute itching when active and becoming hot (the only time it happens, and stops as soon as I cool off). This new parasthesia is completely new and is still ongoing after the infection has mostly resolved.
    CIS DX 2013

    #2
    Hi ms382012:

    Even though the technical meaning of transverse myelitis is any inflammation that crosses the midline of the spinal cord that separates the left side from the right, the medical meaning of transverse myelitis is inflammation that crosses the midline of the spinal cord that affects sensation and motor function (weakness to paralysis) on both sides of the body from the point of the inflammation all the way down.

    Medically, transverse myelitis does NOT mean just paresthesia across just your upper abdomen. So if you want to maintain any shred of credibility with your current neurologist -- or any medical professional now or in the future -- do NOT refer to this incident as transverse myelitis. They'll take it to mean that you don't know what you're talking about, and they'll begin to doubt everything you say.

    Yes, you should report this to your neurologist, even if you think he won't take you seriously. Your post says you've been diagnosed with CIS. If this new symptom is a true exacerbation, it could be a second episode of a qualifying symptom that would change your diagnosis from CIS to clinically definite MS.

    What you're describing is called allodynia. Allodynia is pain associated with touch that isn't normally painful. Heat does not calm overexcited nerves. If anything, it can stimulate overexcited nerves even more, leading to more pain. It's a good thing the heat didn't make your allodynia worse.

    Allodynia is treated with medications that calm overexcited nerves. Neurontin is one of them, so that's why you get some improvement from Neurontin.

    The elephant in the room here isn't that your neuro doesn't take you seriously. It's that you keep seeing him anyway instead of finding a better doctor. The truth is that your own passivity is preventing you from getting optimal medical care. You know something is wrong, so why haven't you changed neurologists?

    The first thing I did was to check to see if you live in Canada, where the national medical insurance controls which doctors patients can see. But you live in the US, where people have very few restrictions on which doctors they see. Even in an HMO, patients are able to change doctors. You should be able to, too.

    You are your own best advocate. So I hope you'll use the power you have and change neurologists so you can get the medical care you deserve.

    Comment


      #3
      Elephant in the room?

      The elephant in the room is being overworked, insurance going downhill, and living in a rural area. He's been a great resource for my migraines. In fact, the only doctor who recognized that I do, in fact, have migraines.

      I just learned that one of the top MS specialists is only 2 hours away from me, I'm hoping I can get in with me. I would like a second opinion after this event.

      I was not aware that spinal lesions would simply be MS lesions. I was also under the impression that MS lesions would not be bilateral.
      CIS DX 2013

      Comment


        #4
        Originally posted by ms382012 View Post
        I just learned that one of the top MS specialists is only 2 hours away from me, I'm hoping I can get in with me. I would like a second opinion after this event.
        That's great! A condition like MS really needs a second opinion, and seeing an MS specialist makes a world of difference. I hope you can get in. Good luck!

        Comment


          #5
          ms382012, very glad you posted about your 'sand paper' type skin pain. I have Allodynia too, since 12/2015. It wasn't until even contact with my bed sheets caused some of the worst skin pain imagineable did it occure to me it was MS related, despite months of agonizing 24/7 skin pain from contact with my clothes, hot baths, cold air from a/c.

          The only pain worse than Allodynia, was pain from Transverse Myelitis with right arm paralysis, before my confirmed MS dx +16yrs ago.

          Neither Allodynia nor Transverse Myelitis have been 'officially' dx by my MS doc.

          jreagan70, not until I read your reply here did I realize my bilateral arm pain w/rt. arm paralysis so many yrs ago was in all probability Transverse Myelitis. Thank you.

          Comment


            #6
            wow!

            Thank you for mentioning that you too have migraine alongside of MS and bring up the fact that there is so much pain going on for anyone with MS that it is so very hard to attribute it to any one condition. Maybe I should have talked to my doctors about this long ago. Will definitely bring up with neuro at my next visit. You see...

            I never knew what was going on when "my hair" hurt, so very long ago. It truly had to be some form of transverse myelitis. When I used to get a migraine (please note past tense, don't get those any more, or do I? in a much different way) my skin would be so very painful all over with the migraine pills making it worse. During that time, no one was allowed, I mean NO ONE! was allowed to touch any hair on my body. Over time, pain would subside and I'd go forth until the next episode of a migraine headache. Or, was it the MS flaring up way before actual diagnosis?

            The phrase stuck, when my "hair hurts" DO NOT TOUCH!

            Comment


              #7
              I would like to recommend a topic thread with Alladonya in the title.

              I've searched everywhere for PAINFUL PARESTHESIA but found nothing. I've had Paresthesia for a decade, and despite how uncomfortable, maddeness and anxiety inducing it has been at times over the years, pain has not been a primary sensation I've experienced with paresthesia.

              It's akin to having to know what Alladonya is in order to research it. Searching painful skin, painful paresthesia is not sufficient to get a medical definition or examination.

              Comment


                #8
                CORRECTION

                medical definition or examination

                should read

                medical definition or explanation

                Comment


                  #9
                  Burning skin with MS

                  I was diagnosed with MS in 2008. My newest symptom is burning skin to the touch if fabric. Not to anything else. Glad I am not the only one. I am on gabapentin and have been for years. I am on my third Neurologist. I don't think any of them feel that the "little" symptoms we have are important. They say, " as far as your MS is concerned, your doing good". They don't live with the:
                  Fatigue, heat intolerance, pain, headaches, burning skin, numbness, no sex drive, optical neuritis, only to name a few.
                  This skin thing is most irritating. Your not alone, and glad I am not alone too.

                  Comment


                    #10
                    Hello zoysia,

                    I've had multiple episodes of LETM (longitudinal extensive transverse myelitis) during my NMO disease course. Relapsing LETM is one of the core characteristics. In reference to your *hair hurting* that is not something that is caused by an episode of TM. TM involves loss of sensation and function. For me, it always required long hospitalizations. That being said, I know exactly what you mean when you say your hair hurt. Allodynia (which is a symptom and not a disease) often causes a painful response to a stimulus that is not usually painful. My skin and scalp have been very sensitive in the past, to the point where I could not tolerate the feel of even a sheet brushing against my skin.

                    jreagan has an excellent post towards the beginning of this thread that discusses both TM and allodynia.

                    Grace (NMO+ since 2005)

                    Comment


                      #11
                      During my ms doctors appointment yesterday doc confirmed my suspicion that my arm pain and paralysis pre dx many years ago was in all probability Transverse Myelitis.
                      I have no spinal lesions, however based on my clinical exam and sx, it's been assured for years that spinal lesions are present but not showing up on MRI films.

                      I wanted to thank you for posting this topic. It's helped provide me with answers to very long standing and confusing sx. I've gotten as close to a TM dx as possible after +16yrs.

                      Hope your Allodynia sx are improving and you're feeling better.

                      Comment


                        #12
                        ms382012

                        ms382012, my post dated 8.17.16 at 7:27am is missing the title, which should be addressed to you.

                        To others who replied to this topic, best wishes headed your way for relief at the very least, full recovery at best, wether you're dealing with paresthesia, Allodynia of skin and/or scalp, (I've had a painful scalp that at the time I attributed to too much scalp time on my pillow), TM, or some combination of all of the above.

                        The wealth of information I find here from you guys is impressive.

                        Comment


                          #13
                          BP Cuff Pain and HBP

                          I'm experiencing pain when having my blood pressure checked, accompanied by HBP. HBP is unusual for me, it can be a bit low or spot on perfect.

                          It's not the first time I've had pain with the bp cuff, but I'm seeing many new docs and referrals, each taking bp, so both cuff pain and high bp are more obvious as a result of frequent doctor visits?

                          I think both the pressure cuff pain and high bp is Transverse Myelitis related. Curious if anyone else with TM has experienced anything similar?

                          Comment

                          Working...
                          X