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Frustration

Posted , 9 users are following.

helen52522
helen52522

In December I went to an oral surgeon after having been to my dentist and my family doctor, who didn't have any idea what was going on with me.  The oral surgeon did a biopsy and in January he told me I had oral cancer.  Scared and not knowing where to turn, I called my family doctor again and he said he thought it was misdiagnosed.  He had the patholgist re-run the biopsy.  The next day the oral surgeon called and said the lab had made a mistake!  Now I have been sent from the oral surgeon (who feels he can't help me) to an ENT (who was a waste of my time).  I am so frustrated.  I have been on steroids, which helped but comes right back with a vengence after I finish the meds.  My mouth hurts all the time.  The ENT gave me a cream but if you over use it, it can cause thrush!  I am willing to try herbal remedies if anyone has any suggestions.  I keep reading about others that have gone gluten free.  I just don't know where to turn.  Suggestions welcome.

2 likes, 29 replies

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  • karen41728
    karen41728 helen52522

    Posted

    Hi Helen

    Not suprised your frustrated, just can't believe the surgeon diagnosed oral cancer, then realised he'd made a mistake, that is so bad, I have lichen planus which burns after spicy foods, so I avoid all spice, have you tried looking at your diet... also I use a herbal toothpaste that a friend recommended which is good also, hope this helps a bit Helen and you get some relief... How old are you? X

    • helen52522
      helen52522 karen41728

      Posted

      I am almost 57. I am watching what I eat trying to avoid nuts and spices but even fruit such as grapes bother me. I have asked my doctor to send me for allergy testing but he is hesitant. So I have been cutting things out isn't diet and seeing if there is a difference
  • rajkiwi
    rajkiwi helen52522

    Posted

    Welcome to the club of frustrated OLP sufferers. Your story reverberates with most that have OLP. Its a constact battle to keep your bacterial and fungal infections at bay. Feel sorry for the cancer scare bit you hd to endure. The doctors are in a profession that requires them to be very mature and responsible...unfortunately very few have empathy leaving aside the mature aspects.

    Eventually there will be a respite or you will get accostomed, I am not sure what actually eventuates yet. You are better off with a skin specialist, though in some countries you may have an Oral Pathologist who can provide you the same level of support. Unfortunately the OLP also shows up in milder variations in other parts of the body, which a skin specialist is more geared to managing.

  • rcolletta2000
    rcolletta2000 helen52522

    Posted

    I totally understand your frustration! Having OLP everywhere I was diagnosed by taking 3 desperate biopsies in different areas, each coming back the samething.

    Doctors not knowing what to do with me but give me steroids which did give me relief!

    Living daily with burning & inflamed gums in my mouth I will say is the most painful! Brushing & flossing my teeth was the worst part of my day! From Louisiana eating spicy foods is always on the menu! 😩

    After 10+ years of dealing with this my dermatologist finally suggested I try a medicine that would need monthly monitoring. Plaquenil 200mg

    First night after taking this med the burning in my mouth had gone away!!! I've only been on this med for two weeks now but so far so good!

    I feel your pain! Good Luck to you!

    • Kmcfatter
      Kmcfatter rcolletta2000

      Posted

      I am from Louisiana also and my Mother has a terrible case of OLP. She has existed on oatmeal for over 4 years now. Doctors can't get hers under control. They have exhausted all normal meds for it. They have just started her on Cellcept, the immunosuppressant drug. Have you ever tried this? What caught my attention is you said the burning is gone. My Mother stays miserable with the burning. Thank you in advance for any info!
    • helen52522
      helen52522 Kmcfatter

      Posted

      I have found that roaming my mouth with dilutes tea tree oil has helped. I have also started rising aloe Vera. It has taken some of the burning away. Hope your mom finds relief.
    • helen52522
      helen52522

      Posted

      That should be rinsing.
    • rcolletta2000
      rcolletta2000 Kmcfatter

      Posted

      Hello Kmcfatter, Again I have had this for 10+ years! My tongue was burning like someone stuck it in acid. I can say the Medicine has helped GREATLY with burning, however just yesterday my gums breakout again. I was hoping we had found my miracle drug, but I'm not giving up yet! It has only been 3 weeks and now I start my twice a day. I follow up with the Dr this Thursday! As of now My concerns that are going on: my face/skin feels like it's burning now -most likely my fault as I was out in the sun doing yard work without a hat-NO SUN with this medicine! I'm paying for my choices.

      Please keep me updated on your mothers "Doctors drug of choice :-)" ! I googled Cellcept & the possible side affects, I would say that some serious risk also! Would love to know if all goes away!

      Tell your mom to watch what she eats, oatmeal just might have "too much immune boosters"! (Crazy I know) This OLP is for the birds! I always second guess myself on what I should eat!

      Also, I'm from SWLA

    • rcolletta2000
      rcolletta2000 helen52522

      Posted

      Aloa Vera sound like it would be soothing....please explain! Did you purchase? Need details:-)
    • helen52522
      helen52522 rcolletta2000

      Posted

      Yes I got it from the vitamin store. I got the gel figuring it would be thick and coat my mouth better. It is soothing especially after brushing.
    • karen41728
      karen41728 rcolletta2000

      Posted

      Hi rcolletta

      When you say about the burning is it just after spicy foods or most of the time, I was diagnosed about 12 years ago by my dentist... Didn't even know then I had it, just these last few years Iv had the symptoms.. I'm 58 almost, how old are you..

      Hope the aloe Vera helps, let me know and take care

    • rcolletta2000
      rcolletta2000 karen41728

      Posted

      Oh I knew something was wrong but had no idea what it was! Doctor after Doctor...

      The burning was ALL THE TIME even worse after spicy food! Had to drink water or milk when eating to help with burning!

    • karen41728
      karen41728

      Posted

      Sorry about that... How old are you and have you ever had problems with a cervical smear only I do think there connected... Well one of the reasons...
    • helen52522
      helen52522 karen41728

      Posted

      I am 57 and have never had cervical smear problems.  I am very careful what I eat - nothing with tomatoes or spicy foods, though I love Mexican and Italian food.
    • Kmcfatter
      Kmcfatter rcolletta2000

      Posted

      My Mother has tried the Plaquenil about a year ago. She broke out into a rash from head to toe. She can't take the steroids. They make hers really get bad. She told me yesterday that if she could just find something to make the burning quiet down that she would be happy. I'm researching and trying to find any ideas I can to try and get her some relief. The Cellcept does have some nasty side effects. I pray that hers will be one of the success stories with it. And I pray that you have found your miracle drug too! We live in DeRidder. An hour north of Lake Charles.
    • kay05103
      kay05103 helen52522

      Posted

      I read that you used aloe vera gel to coat your mouth. Did it have perservatives in it? I am concerned about the citric acid they usually put in it being irritating...I have olp on my gums and also have burning in my mouth, mostly on my tongue.  
    • karen41728
      karen41728 kay05103

      Posted

      I have lp kay and i find avoiding spicy and citrus foods helps.. Have you tried avoiding certain things in your diet.
    • kay05103
      kay05103 karen41728

      Posted

      Yes I have Karen, I have had Interstitial cyctitis for a long time, and the first thing I gave up for that was citrus and spicy food. I know my flares in that with diet, but the burning mouth seems to flare even with water sad  thanks for asking though!

    • karen41728
      karen41728 kay05103

      Posted

      Have you tried the coconut oil kay it is soothing.. How old are you have you ever had any problems with cervical smears..
    • kay05103
      kay05103 karen41728

      Posted

      I have tried coconut oil. But didn't help.No I haven't had any abnormal smears.. I am 56, had a hysterectomy when i was 40 although I do still have my cervix..

    • kay05103
      kay05103 karen41728

      Posted

      Good question! I can't think of anything I said that would cause that...But I am 56 and have not had any problems with smears... I have had a hysterectomy, but still have my cervix.. I have tried the coconut oil before, but am giving it another try.. Thanks!

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