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More problems to Go with LS- Mucous Menbrane Pemphigoid

Posted , 6 users are following.

kate207
kate207

Hi All. A while ago I posted that I was having horrible problems with my mouth , including blistering and peeling gums and fissured tongue. Several of you suggested that it might be some form of Lichen Planus, and my oral surgeon was convinced that it was erosive lichen planus. However, she wasn't happy that my symptoms were characteristic and she took another biopsy (fun!) and sent it off for immunofloresence tests. The results indicate Mucus Membrane Pemphigoid and I now am awaiting a fast track appointment in a specialist clinic as she says this is beyond her eperience. Does anyone else have this? I had a quick look at the symptons and outlook on the net and YEUCH!!!! _it can affect the eyes (80% chance) and all the other mucus membranes.There's also a possibility that it might be a generalised pemphigoid condition which can affect the whole body.   I'm not a happy camper.

0 likes, 9 replies

9 Replies

  • karen41728
    karen41728 kate207

    Posted

    Hi Kate

    I have lichen planus it makes me itch everywhere also my mouth also drives me crazy just wondered how old you are and have you ever had a problem with abnormal smears

    Good luck xx

  • Chrisy
    Chrisy kate207

    Posted

    Poor you.  I have just looked this up and not nice at all.  I wish you well and hope that they are wrong.  Please remember though, that there tend to be worst case scenario pictures posted on the net.  Most of us with lichen sclerosus do not have conditions as bad as most of the pictures on the net.  Please do not get too frightened by what you have seen.  Wait to see what your specialist says.  Good Luck. x

     

  • renee77108
    renee77108 kate207

    Posted

    My periodontist is 99% certain that this is what I have...but two biopsies later it is still inconclusive...but leaning that way.  It has a 50% chance of going to your eyes...and if it goes to the eyes there is an 80% chance of blindness.  No...not a good diagnosis at all.  I started the Paleo auto-immune diet and that has helped me..but after more research I'm not so certain that this is my issue.  I realized that I have been taking way to much vitamin A in supplement form.  For my age I should be taking no more than 2000 to 3000 IU per day..with part of that from food. I've been taking about 6 times that much and it can cause mouth ulcers and other nasty side effects, many of which I have.  I've stopped the excess, but have learned it will take up to 2 to 3 months to see if this is the cause of my mouth issues.  I tell you this in the event that you may be overdoing on any supplements.  I brush my teeth with activated charcoal from bamboo and use a super soft toothbrush.  I rinse with a mild saline solution that I make up with non-iodized salt. If I sense I may be getting an infection I add some 3% hydrogen peroxide to the saline solution and rinse with that (be certain not to swallow any).  Giving up sugar will make a big improvement...and definitely no soft drinks or alcohol.  Spicy or hard crunchy foods should also be avoided.  Good luck...I know how scary the diagnosis is.  Going immediately proactive is improvement. 
    • Chrisy
      Chrisy renee77108

      Posted

      Hi, this just goes to show how careful we have to be when self medicating.  Some vitamins can do lots of harm.  Natural foods and normal diets usually provide all the vitamins we need.  I have heard others with liver damage due to overuse of vitamins.  Look into gengigel mouth wash.  Designed for post surgery and sore mouths.
  • kate207
    kate207

    Posted

    Karen, I'm 60 and never had a problem with abnormal smears. The mucus membrane pemphigoid diagnosis is so scary that LP would almost be a relief! And Renee, the only supplements I take are Vit C (can't eat hard apples or citrus fruits any more) and D (appalling weather so lack of sunshine, plus steroids can affect your Vit d levels I' told). I'm already on a low sugar anti-inflammatory diet which has done ***all to help the condition as has going gluten free. I'm very very fed up, as I'm sure you are too.

    i have worked all my life plus reared my family and am still caring for my very elderly parents, so surely a little me time while I had was healthy enough to enjoy it wasn't too much to ask! sorry for the ventingt - at least I figure getting mad is better than wallowing in self pity!

     

    • renee77108
      renee77108 kate207

      Posted

      You might want to try the activated charcoal from bamboo. I know it sounds nasty...but isn't so bad. I put about 1/4 teaspoon in the palm of my hand. I just leave the 1/4 teaspoon right in the jar. The good thing is that it is very cheap...and just a good thing to have around as it's good as a poultice for stings...poisoning and other things. It cleans your teeth very well and doesn't irritate your gums at all. Rinsing with the saline soultion (scant teaspoon of salt per pint of water) gets the residue out. I do brush occassionally with an aloe vera toothpaste when my gums aren't too bad...just to get that fresh taste that I miss and can get away with it as long as I don't do it too often. I believe that good hygiene is paramount and believe that you can help keep it from getting worse with diet and hygiene.  So it sounds like you are doing a lot of the right things.  Do keep in touch...and I will let you know how I get on as well.  I am going to wait a couple of months before I do the next biopsy to see if cutting back on the vitamin A helps.  You might look into vitamin K2.  Another contributor to this site said that with the vitamin D...that this helped her and I have recently started that. I'm 65 ...I do know about committments.  I am raising a granddaughter. Had her since she was 10 weeks old. Have adopted her and she will be 13 in a couple of weeks. She's actually our 3rd family. I'm retired now...but worked from 15 to 64...so yes, me time is precious and very necessary...but so hard to come by.  So I know where you are at.  Take care...try to find something beautiful in each day. Hugs! Rene'e
  • lizziewizzie
    lizziewizzie kate207

    Posted

    so sorry kate.

    wanted to say something even tho i can't help. thinking of you.

    often times its artificial vitamins and minerals which cause problems...but 'food-grade' are ok and can help. best to see a nutritionist for guidance i've been advised as nutrient deficiencies are a major cause of inflammatory conditions and ill health. unfortuneately natural or food grade vits are expensive but surely worth it....but its balancing them and getting really good specialist advice....these nutritionists will liaise with our GP'S too especially over testing as some tests are poss via the NHS, but others have to be paid for privately... i'm biting the bullet on this x

  • kate207
    kate207

    Posted

    Thanks for all the good wishes and suggestions. Sorry for ranting - I'm sure you all are like me and don't wish to upset family members, so this site is absolutely marvellous for its support from people who know what you're going through.
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