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    Do I have PPMS or am I crazy

    My name is Robert Nicula, I am from Romania and this is my fiorst post on this website.
    The story is kinda complicated so I will try to be as clear as possible.
    Around 5 years ago I have started to develop numbness in my right leg and had MRI's of all my spine which showed a herniated disc at T10-T11 vertebrae. Being a sportsman that meant I couldn't go on with my professional career. All good.

    Around 2 years past and I start to develop numbness in my right arm. So now I have constant chronic numbness on the right of my body. In 2018 I end up at my neurologist and I have an MRI of my brain at 1.5 T. Brain comes normal, no lesions, no atrophy, no nothing. After that I have 3 MRI's (cervical, thoracic and lumbar) at 1.5T. No lessions just small protrusions and incipient hernias al over my spine.

    I have my objective neurological examination. All comes normal. No Babinsky sign, no other sign of MS besides numbness. Neurologists say I cannot have MS.

    After I learn that I might have MS numbness in my left leg and arm develop. So now I have general paresthesia. I go on by myself and have a 3T brain MRI done at another neurologist in another city. Same as 1.5T. Brain is normal. I have another objective neurological exam. Normal. THis second neurologist says I do not have MS and I should be grateful for this.

    He also says I should have some blood tests done to rule out other infectious diseases. Everything comes back normal.

    Than I contacted via email another neurologist whom I know and sent him my MRI's and other paperwork on myself. He said I don't have MS but my spine might be the culprit. The problem is my local neurologist says those hernias are too small to give me such symptoms so the back cannot be the culprit.

    So i have 3 neurologists who say: (all 3) definitely not MS; (1 out of 3) the hernias are the problem (1 out of 3) cannot be the back (1 out of 3) might be the back.

    Also I have gone to an ophthalmologist to test if I have optic neuritis. I wear glasses cause I have myopic astigmatism in my right eye and I see super blurry with that eye. She said no optic neuritis and also my MRI's didn't show any optic nerve damage.

    This is an important question for you. I have a felling my vision in that eye has worsen. I have to wear my glasses more often. Can this be a mild form of optic neuritis that it's not that evident even for the patient himself?
    Also can my astigmatism glasses, once I wear them, improve my vision if I have optic neuritis? I ask this because when I wear them I see clearer with that eye.

    I might have left something out but that's the big picture. In case I remember something I will write it down in later posts.
    Thank you for the support my friends!

    ** 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
    Hello Robert!

    Thanks for sharing your experience with us. Sorry that you are dealing with unexplained numbness.

    It looks like, from your post, that numbness in your arms and legs is your only symptom, besides an eye that becomes blurry at times. Is that right?

    A diagnosis of PPMS cannot be made without evidence of demyelination in your brain or spinal cord, and history of progression.

    This is from the National MS Society:

    "The criteria for a diagnosis of PPMS are:

    1.One year of disease progression (worsening of neurological function without remission), AND

    2.Two of the following:

    -A type of lesion in the brain that is recognized by experts in as being typical of MS

    -Two or more lesions of a similar type in the spinal cord

    -Evidence in the spinal fluid of oligoclonal band or an elevated IgG index, both of which are indicative of immune system activity in the central nervous system"

    https://www.nationalmssociety.org/Wh...Progressive-MS

    Are you going to have further testing? There are many conditions that could cause numbness.

    Hopefully your doctor will continue to look for answers. It seems that you have had a second opinion also.

    Wishing you good luck with getting an answer soon!

    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


      #3
      Neurologists told me to stay physically active. They think my left becoming numb after this MS phobia started has a psychosomatic, conversion disorder factor to it. I do not believe them although I pray they are right.

      I had two suicide attempts by hanging after I was convinced I had PPMS because my numbness had progressed from right leg to right arm to left side.
      So now I am taking sodium valproate for mood, antipsychotic quetiapine for God knows what, sertraline, alprazolam and Ambien. Numbness did not improve nor did my suicide ideas. I still think it's MS.

      First neurologist said I should not think about it. ( I was like sure your whole body going progressively numb and do not bother, great doctor), second said it is my back which has some small hernias and so did the 3rd.

      But I researched the numbness from herniated discs and they have to be big to cause my symptoms. I have seen their MRI's and they look awful. My back MRI doesn't look that bad.

      After reading about the dreaded 5 percent of people with normal MRI's that eventually are diagnosed with MS I am again afraid.

      Now I need you guys to analyze the following if you have spare time.

      I know for certain that MS symptoms that started 5 years ago should show on MRI or I should have some objective alarming clinical sings.
      But the numbness in my leg that started 5 years ago might not be because MS. It might be my only relatively big hernia at T10-T11. My arm numbness cannot be explained by the same hernia though. But the arm numbness started only 2 years ago.

      What are the chances of a normal brain and full spine MRI's plus normal objective neurological exam 2 years after MS?

      The doctors said it is not possible to have general numbness all over my body and have no lesions if the symptoms were to be caused by MS. I should have at least 10-15 lesions in multiple areas.
      But they do not seem to care about the 5 percent of people that have normal MRI's. They told me that's horse crap.

      I will try to get my neurologist to have VEP done on me. I want to continue investigating why this numbness progressed. There is a cause for everything. There has to be a cause for my symptoms.

      I told them about lumbar puncture. They said there is no way they recommend me that procedure because I am not suspected of having MS. Plus they said it gives a lot of false positive results that do not mean I have MS.

      Is there a chance I might be completely gone in my mind and not have a motive to worry?

      Comment


        #4
        Originally posted by karenin08 View Post
        Also I have gone to an ophthalmologist to test if I have optic neuritis. I wear glasses cause I have myopic astigmatism in my right eye and I see super blurry with that eye. She said no optic neuritis and also my MRI's didn't show any optic nerve damage.

        This is an important question for you. I have a felling my vision in that eye has worsen. I have to wear my glasses more often. Can this be a mild form of optic neuritis that it's not that evident even for the patient himself?
        Also can my astigmatism glasses, once I wear them, improve my vision if I have optic neuritis? I ask this because when I wear them I see clearer with that eye.
        Hi Robert and welcome!

        I too am sorry you are having problems. You might consider going to a neuro-ophthalmologist to allay your fears about having optic neuritis. The following explains what a neuro-ophthalmologist does, disorders that are treated, what takes place during the exam and what to bring to the exam.
        http://www.weillcornelleye.org/services/neuro.html

        Hopefully, you can make an appointment and get some answers to your questions and fears.
        In the meantime, take care!
        1st sx '89 Dx '99 w/RRMS - SP since 2010
        Administrator Message Boards/Moderator

        Comment


          #5
          Hi Robert.

          At this time there is no reason for you to assume you have MS. There is nothing in your MRIs or Neurological exam to indicate MS. Both make MS highly unlikely.

          But I researched the numbness from herniated discs and they have to be big to cause my symptoms. I have seen their MRI's and they look awful. My back MRI doesn't look that bad.
          To determine if the Herniated discs are causing your symptoms you would need to see a Spine Surgeon. If you are not medically trained to interrupt MRIs and you are not a Spine Specialists you do not have the appropriate knowledge to determine the status of your herniated discs.

          No lessions just small protrusions and incipient hernias al over my spine.
          This is the reason to see a Spine Specialist.

          can my astigmatism glasses, once I wear them, improve my vision if I have optic neuritis? I ask this because when I wear them I see clearer with that eye.
          You have Astigmatism not Optic Neuritis that's why your glasses improve your vision.
          Information on Astigmatism:
          https://www.allaboutvision.com/condi...stigmatism.htm
          Diagnosed 1984
          “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

          Comment


            #6
            Originally posted by Seasha View Post
            Hi Robert and welcome!

            I too am sorry you are having problems. You might consider going to a neuro-ophthalmologist to allay your fears about having optic neuritis. The following explains what a neuro-ophthalmologist does, disorders that are treated, what takes place during the exam and what to bring to the exam.
            http://www.weillcornelleye.org/services/neuro.html

            Hopefully, you can make an appointment and get some answers to your questions and fears.
            In the meantime, take care!
            My city only has ophthalmologist but if my problems persists or gets worse I will make an appointment to the nearest neuro-ophthalmologist.
            Hopefully I won't need that.

            Comment


              #7
              Originally posted by karenin08 View Post
              Neurologists told me to stay physically active. They think my left becoming numb after this MS phobia started has a psychosomatic, conversion disorder factor to it. I do not believe them although I pray they are right.

              I had two suicide attempts by hanging after I was convinced I had PPMS because my numbness had progressed from right leg to right arm to left side.

              So now I am taking sodium valproate for mood, antipsychotic quetiapine for God knows what, sertraline, alprazolam and Ambien. Numbness did not improve nor did my suicide ideas. I still think it's MS.
              Sorry to learn that you have mental health issues to deal with also.

              Do you have the ongoing support of a psychiatrist or psychologist?

              Therapy can be very helpful. I found it to be helpful for me, while going through some difficult times.

              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


                #8
                I also would like you to see some kind of therapist if you have contemplated suicide.

                At one point in my life (and that was after I got a diagnose) I thought along those same lines. I have never divulged that fact here on MSWorld, but it's time I brought that to the forefront. Therapy from a licensed psychiatrist helped save my sanity and my life! Meds that were prescribed to me have helped maintain a level of balance to this day.

                I cannot stress enough the importance for seeking help!
                Stay with us, friend. Vent if you need to and keep asking questions. We're here to help you in many different ways. Breathe, breathe, breathe deeply.
                1st sx '89 Dx '99 w/RRMS - SP since 2010
                Administrator Message Boards/Moderator

                Comment


                  #9
                  Originally posted by SNOOPY View Post
                  Hi Robert.

                  At this time there is no reason for you to assume you have MS. There is nothing in your MRIs or Neurological exam to indicate MS. Both make MS highly unlikely.



                  To determine if the Herniated discs are causing your symptoms you would need to see a Spine Surgeon. If you are not medically trained to interrupt MRIs and you are not a Spine Specialists you do not have the appropriate knowledge to determine the status of your herniated discs.



                  This is the reason to see a Spine Specialist.



                  You have Astigmatism not Optic Neuritis that's why your glasses improve your vision.
                  Information on Astigmatism:
                  https://www.allaboutvision.com/condi...stigmatism.htm
                  So symptoms of Optic Neuritis do not improve if you wear glasses?

                  Comment


                    #10
                    Originally posted by karenin08 View Post
                    So symptoms of Optic Neuritis do not improve if you wear glasses?
                    Yes, this is correct. I had ON years ago, wore glasses and it did not help. Only steroids and time helped heal the effects.
                    1st sx '89 Dx '99 w/RRMS - SP since 2010
                    Administrator Message Boards/Moderator

                    Comment


                      #11
                      I have the Epstein-Barr Virus in my body.
                      It did not develop into Mono and can't remember to have had any symptoms. My neurologist said so many people have this that it is not relevant.
                      So I researched the internet and it turna out that 90 percent of people have this EPV thing. Should I worry for my elevated IGg levels on this virus?

                      Comment


                        #12
                        Originally posted by karenin08 View Post
                        Should I worry for my elevated IGg levels on this virus?
                        No.

                        You don't have any signs of Multiple Sclerosis (testing, neurological exam/evaluation).
                        Diagnosed 1984
                        “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                        Comment


                          #13
                          Originally posted by SNOOPY View Post
                          No.

                          You don't have any signs of Multiple Sclerosis (testing, neurological exam/evaluation).
                          The first neurologist who consulted me saw a possitive Hoffman reflex and ordered a brain MRI. When that came clear he said he does not know what I have and I should go to the main neurologist which I did. (The doctor who told me this was in pension but he continued to work).
                          The other 2 doctors who performed the neurological exams did not check for this sign.

                          " A positive Babinski sign is considered a pathological sign of upper motor neuron disease except for infants, in whom it is normal,whereas a positive Hoffmann's sign can be present in an entirely normal patient."

                          I took this info from Wikipedia. Is that the reason the other 2 neurologists did not analyze this reflex?

                          Comment


                            #14
                            Originally posted by karenin08 View Post
                            whereas a positive Hoffmann's sign can be present in an entirely normal patient
                            Robert ~ I found a couple articles on Hoffman's sign, and both had this same info. Not a very reliable diagnostic tool.

                            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


                              #15
                              Originally posted by KoKo View Post
                              Robert ~ I found a couple articles on Hoffman's sign, and both had this same info. Not a very reliable diagnostic tool.

                              Take Care
                              Thank you for the replies kind people. You are really helping me.
                              If my visual symptoms persist I will be geting a VEP and a consultation from a neuro-ophthalmologist.
                              As with the numbness... Hopefully it won't progress further.

                              Comment

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