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    Doctors say: "probably MS"

    Hello Everyone!

    Hope you are doing ok

    This is my first post here. I will try to make a long story short

    My journey began 3 years ago (I was 20 yo) with some mild neurological symptoms (muscle weakness, mostly in left leg and slightly impaired sensation on the left side of my body). I was admitted to the hospital where I had brain and cervical spine MRI, spinal tap, EEG - all clear. Neurological exam was fine. Also tested negative several times for Lyme (both blood and spinal fluid). I was told I am ok and should keep living normally and so I did. I was even able to do sports. The symptoms never went away but I managed to live with them quite well.

    Everything changed this year. The muscle weakness got a little bit worse (still only on my left side), the muscles in my left leg are a little bit stiff, constant exhaustion, complete heat intolerance, horrible back pain (also had a lumbar MRI - clear), tingling, burning sensation in my skin, I tend to bump into walls and furniture, horrible brain fog, fasciculations, problems with urination.

    On 11th November I went to ER with what I thought was sciatica. Got some pain meds and was told to come back if symptoms persist. Neuro exam was ok. But I went back two days later because muscle spasticity in my left leg got worse. Also in neuro exam I had positive Babinski sign on left side, Jacobson reflex in left arm, no Achilles reflex on left side, and very brisk knee reflex on left side (that was the first time ever I had some abnormal signs in neuro exam).

    Was admitted to the hospital for some tests as "MS patient". The MRI of brain and cervical spine came back clear. I am still waiting for the results of the spinal tap, but my doctor is convinced I will test positive for oligoclonal bands. I will also have later VEP (not sure when). Anyway, I was discharged with Dx "Observation towards multiple sclerosis" but was told to register at MS clinic... I should have my results this week or so and will let you know as soon as I get those. I will be also going on a visit with some good MS doctor shortly.

    B12 deficiency was also ruled out.

    I had a consult with rehabilitation physician and she say that my right side is not 100% ok with regard to muscle strength.

    Now I also have Babinski sign also in my right foot.

    Right now I take tolperisone which seems to help a little bit with muscle spasticity.

    I was wondering if it is possible that there are no lesions in the MRI at first? I mean, could it be possible that I indeed have MS and no lesions at the moment?

    All the best for you,
    Aleksandra

    P.S. I apologise for any spelling errors but for last couple of months I do horrible mistakes without even being aware of this...

    ** 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 to MSWorld aleksandra91!

    I'm glad you connected with us, but sorry you are in this waiting game. I hope the results of your spinal tap will help give you some definite answers as being in "limbo" can be frustrating! It sounds like your Dr. is making good decisions about going forward - especially the recommendation for seeking an MS clinic. Having a good neuro who specializes in MS is a huge plus!

    I was wondering if it is possible that there are no lesions in the MRI at first? I mean, could it be possible that I indeed have MS and no lesions at the moment?
    It is possible to have MS with a negative MRI reading. Much depends on the strength of the MRI machine and using or not using contrasting dyes. I found this article from MedHelp which I hope will answer your questions:

    http://www.medhelp.org/tags/health_p...-MRI?hp_id=161

    Probable MS was also my initial diagnose many years ago. Whether you have MS or not, you are very welcomed here! Ask many questions and explore all of our forums. And be sure to let us know what you find out!
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      Originally posted by Seasha View Post
      Welcome to MSWorld aleksandra91!

      I'm glad you connected with us, but sorry you are in this waiting game. I hope the results of your spinal tap will help give you some definite answers as being in "limbo" can be frustrating! It sounds like your Dr. is making good decisions about going forward - especially the recommendation for seeking an MS clinic. Having a good neuro who specializes in MS is a huge plus!



      It is possible to have MS with a negative MRI reading. Much depends on the strength of the MRI machine and using or not using contrasting dyes. I found this article from MedHelp which I hope will answer your questions:


      Probable MS was also my initial diagnose many years ago. Whether you have MS or not, you are very welcomed here! Ask many questions and explore all of our forums. And be sure to let us know what you find out!
      Thank you for your post!

      I must say, although I know it may sound weird, I am sort of glad I have quite a lot of abnormalities in my neuro exam recently, as I was told for the last 3 years that it is all "in my mind". (I went to couple of psychiatrists but all of them ruled out psychologisal ethiology) But the symptoms get worse... And having for example Babinski sign just proves that there is something wrong going on in my CNS but is is just not yet visible on the MRI. I will actually have consults with 3 different MS doctors over the period of next 3-4 weeks, just to get different opinions. I will also have a consult with ophthalmologist on Tuesday (because of bumping on walls and furniture, and also getting sort of fog feeling in my left eye from time to time, which lasts for couple minutes but it comes and goes). I will also have urodynamic test done in 2 weeks.

      Tomorrow one thing occured to me. I had an episode of having a blurry vision in my left eye (could not see anything) 3 or 4 years ago. It lasted for 2 days and resolved by itself. Maybe it was the beginning...

      Comment


        #4
        Question

        aleksandra91, if you don't mind me asking what is a urodynamic test?

        hlburke87

        Comment


          #5
          I know I am jumping in here and I am sorry if I am overstepping but I am pretty sure that a urodynamic test is done by an urologist using a catheter placed through the urethra into the bladder. Then the bladder is filled with fluid that has some chemical that can be seen on X-ray. The fluid capacity of your bladder is then measured when you eliminate to calculate if the bladder is emptying suficiently.
          I hope I have explained the test correctly. It is very simple and almost as fun as the 'Spanish Inquisition' ! I had the test about a month ago. Wow , what fun !

          Comment


            #6
            Thanks!

            hlburke87

            Comment


              #7
              My story and symptoms are very similar to yours. Same left sided weakness twice in eight years, bladder problems, balance problems etc. I have always had abnormal neuro results and like you I have no diagnosis.

              With regards to lesions, it is my experience you can have signs and symptoms without lesions showing. I had lesions initially, but they disappeared and have never come back. I don't know if this means it's MS without lesions or another etiology which doesn't show abnormalities on MRI. Waiting to see what neuro says.

              Comment


                #8
                Hi and Welcome! I was told it as was all in my head for 10 years or more so I sure know how that feels.
                I hope you do not have M.S. and your spinal tap shows something more treatable than the MonSter.
                Try to stay positive,
                PEACE

                Tortis

                Comment


                  #9
                  Yup; Me too!

                  I'm going through the same nightmare. It's been about 5 years of hanging in limboland. I'm so frustrated and angry and afraid.

                  I am NOT a neurotic, nervous person. But my Neuro is making me feel like that is what is causing all of my issues. Really? My MRI's light up like a christmas tree and that's due to anxiety? My balance issues, vertigo, migraines, tingling, numbness, weak right thigh, buzzing sensations, electric shock sensations upon head movement that go down to my foot, the speech and swallowing disorders (both diagnosed), bilateral hearing loss. spasms of limbs, fasciulations, possible past optic neuritis, abnormal VEP, abnormal VNG (negative spinal tap and negative spine/cervical MRI's), balance issues (always fail balance test in office), deficits in all cognitive areas on neuropsychological testing, Uveitis (rare eye disease that is proven to be connected to MS), exaggerated startle response, extreme disabling fatigue, heat intolerance that makes symptoms worse, tremors of hand, arm and leg (all on right side).....

                  I'm sure I'm forgetting something. And he has the nerve to tell me that anxiety is causing my last flare up? I trusted and loved this man with everything I had and now he's dismissing it all to anxiety? I don't understand these doctors. I am reading horror stories about others who are encountering this same thing. Is this the new trend?

                  So sick of it. Meanwhile I am getting worse every year.

                  Time for a 2nd opinion.

                  Comment

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