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    Just need to talk...and maybe ask some questions

    Hi all. Iím a (almost) 44 year old woman. Iím currently going through testing to figure out whatís going on with me and so far things are pointing in the MS direction. My most severe symptoms have been getting progressively worse over the last few months with no relief. (Also, in retrospect, Iíve had some symptoms over the years that might point to this also. Iíll go more into that later.)

    A few months ago I was having some difficult sleep issues. My legs started bothering me at night. Almost felt like restless leg syndrome but *different* in some way. Then they started to become sore during the daytime and have random twitching and spasms. Just walking made me tired and I wanted to sit a lot. Then after a few weeks of this, one night while sleeping I had like terrible shocks in my left ankle. When I woke up in the morning it was numb along with my heel.

    As days and weeks have progressed, the weakness and numbness have travelled up the left side of my body. Iím at the point where I have left foot drop, canít lift my leg past my hip, canít raise my left arm past my shoulder and the left side of my face is slightly numb. I walk like a drunk sailor. Iím extremely fatigued all the time. Iíve started to get headaches in my upper right quadrant with some right eye pressure but no real vision issues that I can tell. (I do wear glasses so I donít have the best vision to begin with). And Iíve also started to get headaches at the base of my skull where it meets my neck. The headaches are kind of dull but with sporadic electric shocks. I also have random sweaty feet and hands right now (so annoying.)

    Looking back, I had an episode of Vertigo about 11 years ago. Had to be taken to urgent care, it was so bad. And since then Iíve had about 3 or 4 bouts of vertigo since then (knocks me out for at least a day), but getting closer together in more frequent years. Iíve also had a few episodes of numb patches of skin that will get electric shocks. Mostly in my legs, but every so often in other areas of my body. Over the last year or so Iíve had a terrible time recovering from illness. I had a laparoscopic hysterectomy last year and I had a horrible time recovering. No one could understand why.

    Iíve had an MRI (with OUT contrast) of my lumbar, brain and c-spine. All clear. (But with that said, the techs said ďYour symptoms sound like MS. Normally the doctor also orders t-spine and has us do them all WITH contrastĒ-I donít think my doctor knows what sheís doing.) Iíve had every blood test you can think of. All normal. I do have another MRI of my t-spine (after pushing for it) scheduled soon.

    So I guess first off, do these symptoms sound like MS to you and if not, is there another condition you think could be causing this (so I can have another rabbit hole to go down LOL) and also, should I push for new MRIís with contrast? Does it make a big difference? And have any of you been diagnosed with MS but did NOT have lesions on their brain or c-spine? Any info you can provide would be soooo helpful!! This limbo land is terrible. I just want to know what aleís me so I can do something about it. Iím afraid Iím delaying treatment that could make me better or Iím afraid Iíll do the wrong thing and make my symptoms worse.

    #2
    Hello Tippileigh and welcome to MSWorld.

    MRIs done with contrast(dye) won't show anything that wasn't in The MRIs without contrast. All contrast does is "light up" if what was found on the non-contrast MRIs is currently active (inflammation). If your non-contrast MRIs were normal your MRIs with contrast will also be normal.

    The Lumbar MRI is not used for diagnosing MS but to determine if there are mechanical lower back problems such as spinal stenosis, bulging/herniated discs, etc. These type of problems can cause Neurological type symptoms. If your spine MRIs showed any bulging/herniated discs it would be a good idea to seek the opinion of a Neurosurgeon or Orthopedic spine surgeon.

    And have any of you been diagnosed with MS but did NOT have lesions on their brain or c-spine?
    I was, however that was a very long time ago.

    With newer technology it's highly unlikely for a person to be diagnosed without meeting the diagnostic criteria for MS (The revised McDonald Criteria).

    Unfortunately, there is no symptom exclusive to MS, many different conditions have similar symptoms as those seen in MS.

    You might keep working with your Drs. to find the answers you seek. Sometimes starting over with your Primary Care Physician might be helpful.

    Take care.
    Diagnosed 1984
    ďLightworkers arenít here to avoid the darknessÖthey are here to transform the darkness through the illuminating power of love.Ē Muses from a mystic

    Comment


      #3
      As MRI technology gets better, it is uncommon that anyone would be diagnosed without lesions on the scans. Like Snoopy said, years ago, it may have been more common.

      Since contrast has been shown to stay in the body, it is now recommended to only use contrast to confirm an active relapse. As Snoopy said, the contrast would not show any lesions not picked up without. To me, since your neuro ordered without, it actually makes me think he knows what he is doing and stays current on guidelines.

      That being said, there have been studies that show some lesions disappear. So it may be worth discussing with your neurologist a future MRI if no answer for your symptoms are found.

      Curious, did your neuro do any bloodwork to rule out some of the diseases that mimic MS? If not, it is another avenue to pursue with your neuro along with orthopedic doctor. If nothing orthopedic is found, ask your neurologist what his recommendation is to find a cause.

      Vertigo can also have multiple causes. You may want to talk to your PCP about exploring these possibly seeing an ENT.

      Sorry that you have no answers. I hope you get some relief from symptoms.
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        Hello Tippileigh

        Hope you're doing well today, all things considered.

        Originally posted by Tippileigh View Post
        So I guess first off, do these symptoms sound like MS to you and if not, is there another condition you think could be causing this (so I can have another rabbit hole to go down LOL)
        Here is a list of other possible conditions that might mimic MS, from the National MS Society website:

        Differential Diagnosis (MS mimics)

        https://www.nationalmssociety.org/Fo...tial-Diagnosis

        Take Care
        PPMS for 22 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #5
          My wife had no

          Lesions in the brain and two on the spine. This was 20 years ago when she was 58. She has been on copaxone Ever since. Her very first symptom was optic neuritis 10 years prior to diagnosis. Fatigue, spasms and shooting pains is what sent her to Penn for the diagnosis.


          Hope you get answers soon and get on one of the meds.Good luck to you.

          Comment


            #6
            It is possible to have MS without lesions, but you will NOT get an MS diagnosis until you have some.

            Researchers are now beginning to feel that some lesions heal themselves, and I believe that. I had consistent symptoms for 40 years before I got my diagnosis. I was sent for MRI's back when they were still such a new method that none of our local hospitals had them and I had to go to a clinic that was built specifically for them. Every one of them came back negative, but I also wasn't sent for an MRI until 6-18 months after my latest exacerbation.

            I got my diagnosis once I found a neurologist who sent me for a battery of tests right away. I've come to believe that it's very important to have the MRI's while you are in the midst of your problems rather than waiting until you say "Well, a few months ago I had this and this."

            Keep researching your symptoms, be open-minded, and pay attention to the diseases that your neuro has ruled out. If nothing has been ruled out yet, you might want to consider finding a different neuro. I went through several before I found one who actually listened to me.

            They say that MS can mimic a lot of other diseases, but I really don't believe that. I think a big problem with getting diagnoses these days is that the McDonald Criteria is too strict simply because of the creation of DMT's. They can't put you on expensive, potentially-dangerous drugs without being absolutely sure that you have MS, so you spend years undergoing tests until you finally get an MRI that shows lesions.

            Maybe you have MS; maybe you don't. The important thing is to listen to what your body is saying and just keep fighting.

            Comment


              #7
              Originally posted by Tippileigh View Post

              So I guess first off, do these symptoms sound like MS to you and if not, is there another condition you think could be causing this (so I can have another rabbit hole to go down LOL) and also, should I push for new MRIís with contrast?
              Welcome!

              I don't usually have very helpful advice for these kinds of questions. Because so many diseases mimic MS (and I do believe that!), it's just hard to know. Because MS is neurological and affects the brain, almost anything could be MS, but that doesn't mean that everything with symptoms that match is.

              Regarding MRI's with contrast, I'm not real comfortable with having them use contrast on me. I don't remember specifics, but I know I've read enough in the past to concern me.
              ~ Faith
              MSWorld Volunteer -- Moderator since JUN2012
              (now a Mimibug)

              Symptoms began in JAN02
              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
              .

              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

              Comment


                #8
                Donít do what I did

                If thereís anything I would recommend to you I would say keep your symptom research to a minimum. You might fuel your anxiety about what ever condition you ďmightĒ have. I went ďdown the rabbit holeĒ and Iím currently undergoing therapy for the PTSD that I caused myself.

                Just to share a little about my story, I spent tons of time, money and energy and Iím still in limbo. Nearly all the symptoms I have are considered idiopathic. Which doesnít mean their not real it just means thereís no known cause. I still believe I have MS but I learned my lesson and Iím taking a more conservative approach. My plan is to just get 1 MRI per year to see if anything changed

                If youíve ruled out all the other diseases, and your MRIs are clear, thereís not much more you can do than wait and see. Treat the symptoms you do have and physical therapy works well for those ones that wonít go away (like the pain in your legs and how to correct the way you walk).

                Thereís usually no point to get an MRI within a yearís time. Thereís just no change that quick. As for wanting to treat your condition if you do indeed have MS. I can tell you that it is by far safer to be sure you have it before taking DMTs. They are dangerous medications and thereís no guarantee that theyíll work. Iíve decided to go all natural. Not like holistic but by mindful eating, staying as active as I can, and just by living my life.

                You might be surprised by your attitude towards your symptoms and how much they might improve if you look at it positively. MS does in fact get worse with stress. So managing stress is pivotal whether you have MS or not.

                I do wish you luck on your journey and hope you get relief from your symptoms.

                Comment


                  #9
                  Hi Crazyguy

                  I really do appreciate your help for another on this forum. Your experience in the diagnostic process is greatly helpful for others.

                  Originally posted by Crazyguy View Post
                  If thereís anything I would recommend to you I would say keep your symptom research to a minimum. You might fuel your anxiety about what ever condition you ďmightĒ have. I went ďdown the rabbit holeĒ and Iím currently undergoing therapy for the PTSD that I caused myself.
                  I struggled with posting to you or not. Your mention of giving yourself Post-Traumatic Stress Disorder (PTSD) due to researching medical information is not what causes PTSD. There is a diagnostic criteria for PTSD which is the same criteria for Veterans. Some people believe watching scary movies and having nightmares means they have PTSD. That is also not true.

                  Information about the diagnostic criteria for PTSD. If you go to "read full article" it will give you the full diagnostic criteria for PTSD.
                  https://www.ptsd.va.gov/professional...5_ptsd.asp#one

                  I can certainly understand excessive medical research creating extreme anxiety, for some people, and I am glad you are seeking help. I do wish you all the best.
                  Diagnosed 1984
                  ďLightworkers arenít here to avoid the darknessÖthey are here to transform the darkness through the illuminating power of love.Ē Muses from a mystic

                  Comment


                    #10
                    Originally posted by SNOOPY View Post
                    Hi Crazyguy

                    I really do appreciate your help for another on this forum. Your experience in the diagnostic process is greatly helpful for others.



                    I struggled with posting to you or not. Your mention of giving yourself Post-Traumatic Stress Disorder (PTSD) due to researching medical information is not what causes PTSD.
                    Hi snoopy! Thanks for replying. I agree with you about the fact that researching symptoms does not cause PTSD. I may not have a typical case of trauma but I did experience trauma none the less. First with my blood tests, and then with the shock of realizing that Iíve had MS for most of my life. My obsessing about researching pediatric MS and the potential problems of it horrified me. I literally thought I was going to die. When I experienced my doctors lying to me It made my outlook worse. It may not be PTSD exactly but I do know some traumas cause people to subject themselves to repeated exposure to try to understand that trauma. My cousin was permiscuous after the sexual trauma she experienced when she was a kid.

                    Iím sure there may be different treatments for different traumas but this treatment is working for me. Although I realize now the dangers of diagnosing yourself itís something thatís taken me three years to slowly get over. I am somewhat thankful for this expirience because itís shaped me into who I am. I finally love myself again and accepted my situation. Thanks again for responding to me. I just wanted to share the dangers of diagnosing yourself.

                    Comment


                      #11
                      Originally posted by Crazyguy View Post
                      Iím sure there may be different treatments for different traumas but this treatment is working for me. Although I realize now the dangers of diagnosing yourself itís something thatís taken me three years to slowly get over. I am somewhat thankful for this expirience because itís shaped me into who I am. I finally love myself again and accepted my situation. Thanks again for responding to me. I just wanted to share the dangers of diagnosing yourself.
                      Thank you for sharing your experience, Crazyguy.

                      So glad to know that you're doing better with therapy.

                      A little peace of mind goes a long way.

                      Take Care
                      PPMS for 22 years (dx 1998)
                      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                      Comment

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