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    • #16336
      Melba W. Benson
      Participant

      Has anyone else been diagnosed with Burning Mouth Syndrome?  The specialty dentist I went to had me to change to Crest for Kids toothpaste, Crest Scope Mouthwash, Biotene Gel, and Biotene Mouthwash.  Also I take three Mycelex troches per day and one Alpha Lipoic Acid 600 per day.  Still I get so bad around 10:00 p.m. that my mouth puckers up and I can barely talk.  If anyone has Burning Mouth Syndrome and has suggestions, I would really appreciate it.

    • #16342
      Jean Mellano
      Keymaster

      hi melba,

      that sounds awful, never heard of it, does your dr. relate it to PD issue?

    • #16346
      Melba W. Benson
      Participant

      Yes, Jean, my doctor does relate it to PD.  I am hoping someone out there has some suggestions.

    • #16362
      Melba W. Benson
      Participant

      Jean, I am beginning to think that anything can happen. Thank you so much for sending the article about the burning mouth levadopa connection. This is one I hadn’t seen. My neurologist has indicated that my symptoms are not yet bad enough to take carbidopa/levadopa. As I read the side effects of Pramipexole, they sound about as bad as the side effects from carbidopa/levadopa. One other thing which has happened to me is that my upper lip began disappearing into my lower lip. On November 27, 2018, the Chairperson of the Department of Plastic Surgery at UT Southwestern in Dallas performed Erbium laser treatment on me. My new lips look wonderful, but that area of my face still has some red spots almost a year later. The plastic surgeon says he has never performed this on someone who didn’t heal. Also, a sinus MRI revealed that saliva was being taken from my mouth and was running out my nose. The Chairperson of Otolaryngology at UT Southwestern performed a nasal procedure on me referred to as a Clarifix (Stryker) on September 11, 2019. When I returned for a checkup, I estimated that my nasal running had improved only about 25%. The otolaryngologist then put me back on a nasal rinse, followed by Fluticasone Nasal Spray, with Ipatropium Bromide Nasal Spray .06% before each meal. He will recheck me in 6 months. So far, I still have problems with nasal running. All my symptoms get worse as the day goes on. Yes, I am certainly hoping someone will have some information about any of these areas that would help me.

      • #16363
        Jean Mellano
        Keymaster

        melba,

        i am so sorry to hear of your struggles.    the side effects of pd drugs  (like most rx drugs) are horrible.  however, not everyone experiences them and in my case and many others, the nausea side effect of carbidopa/levodopa passed over time (with the help of peppermint oil for me)

         

        as for laser , years ago, a dermatologist used laser to remove my broken capillaries, however, i had a reaction (my face swelled up very badly) the doctor had never seen before…

         

        we all have our own tortuous journeys with this disease and i hope you find some relief. you have more than your fair share…

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