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    Haven't been here for awhile

    I been so bent on denial but it is all driving me crazy....no surprise there huh? Ok here goesssssssss I been really paying attention to my body which I never really have done ever..My headackes of course never go away and this new Topamax generic drug Topiramate has "the sound of silence" constantly in my ears. If anyone understands that. It has me so I dont want to eat.

    I have a real problem with my spine C6 and C7 are pressing into my esophagus and pretty much all I have been able to eat for 2 weeks now is watery cream of wheat( I finally get to go to neurosurgeon next month to see if he can take care of that) But have not lost any weight.Don't know if that is good or not. My Neuro never has said Yes I have MS outright and he is finally coming back tomorrow from his 2 week vacation and you can bet your butt I will be sitting at the door when he walks in.

    But back to my body...my calves never stop hurting,not so much that I can't walk but still. The past few weeks my legs and back itch on and off more on than off. My back never stops hurting. I dring a half cup of water and spend the next 20 minutes running back and forth to the bathroom and up and down all night. Guess I been doing that the past year just never noticed. Now the past few weeks to I have eye pain that comes and goes but I don't know if that is caused by this Topamax generic med or not.

    I have made Dr. appt. but it all is becoming a very stressing vicious circle. My neuro wants me to start on Gilegya but he hasn" reallystraight out said if he believes I have MS or if he just Thinks I have it SSSSSSOOOOOOOOOOOOO he damn well better have some answers when I see him. Ok well if anyone has any feed back I sure could use it. Thanks for letting me vent

    **Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

    #2
    Hi hapbear, I know how frustrating it is not knowing what is wrong, and why do we have all these symptoms!!

    Have you had any MRIs or a Lumbar Puncture? Yes, by all means demand some answers from your neuro. It's so hard living in limbo, isn't it?!!

    Glad you came here to vent! Hang in there- we understand!

    Comment


      #3
      ((hugs))

      I am on Topamax too (the generic) and it can cause some of the symptoms you describe (not wanting to eat and some bathroom problems). It *can* also cause eye problems, so you really should talk to your doc asap about that.

      I think you either love or hate Topamax depending on what you are on it for (I'm on it for a hand tremor and it is the only thing that has slightly helped it, so I like it).

      Sounds like you are not tolerating it well. If your appt isn't for a while, I would call your doc and tell them about the eye issues.

      Sorry you are having such a rough time! Limbo can be really rough, not knowing exactly whether you are diagnosed. Do not be afraid to ask and get answers. We are here for you!
      Erin

      doing the Limbo since 2005

      Comment


        #4
        photomama

        Yeah I went to see my reg doc she said the generic topomax is not the cause of my problems I need to go see my neuro hahaha he still has not returned my call for an appt I am getting so so so mad... If he does not call by end of business today I will sit outside his office again tomorrow I sat there until noon today and he never showed....

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          #5
          casionomama

          Yeppers had all the tests wasnt any fun but I wanted to know. All the etsts came back normal. I sat outside my neuros office until noon and he never came in...what a surprise. And he still has not returned my call for an appt.
          I will again sit outside his office tomorrow and I will not leave until he either shows up or the office closes for the day

          Comment


            #6
            Sorry for all you are going through.

            But since this involves your esophagus and eating..see a Gastroentrologist. I did. He stretched my esophagus and have not had problems since.

            Why not call your doc's office too and leave a message then ask to talk to his NURSE..they triage his calls.

            Good luck

            Jan
            I believe in miracles~!
            2004 Benign MS 2008 NOT MS
            Finally DX: RR MS 02.24.10

            Comment


              #7
              mjan

              Yeah it's not a matter of stretching the esophagus a doc did that a year ago TOTALLY missed that C6 and C7 were pressed into my esophagus. I mean seriously impending on it The radiologist states in the report it is "SIGNIFICANTLY IMPENDING ON THE ESOPHAGUS" and yet nobody will do a dang thing until they personal review the MRI etc etc etc What do I have to do choke to death before somebody takes me serious. And I had to get a lawyer just so someone would see me to view the dang MRI

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