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12/28/2011 10:09 AM

Oral LP - can't taste sour things

OhLP
Posts: 22
New Member

Hey everybody, I'm new to this forum and haven't joined anything to do with LP before. I'm 22 and female.

I have oral lichen planus, and have done for about 3 years I think (could be longer, I never even really noticed it until I got blisters) and my dentist told me I have it quite bad. Anyway, it's always been there and has never improved or really got worse, except when I went into hospital and it completely went (I have no idea why) but it slowly came back.

Since this, I have noticed I can't taste anything sour - at all. Is this normal? I can't find anything on the internet about anyone else with oral LP not being able to taste it, so I'm unsure of whether it's related.

I do have a dentist appointment on the 3rd January, but I wondered if anyone who suffers from it has this problem also.

Thanks Smile

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01/09/2012 03:33 AM
OhLP
Posts: 22
New Member

Dentist didn't have a clue, ended up being referred to a specialist... again Sad

01/10/2012 04:32 AM
MiniatureET
Posts: 7
New Member

Hello! I am 22, female and have OLP too!

How long do you have to wait before seeing the specialist? I am curious, have the said how long it will last? They dont seem to know anything about it do they??


01/10/2012 01:29 PM
OhLP
Posts: 22
New Member

I'm in the UK - incase that makes any difference to waiting times etc. Well I've not got to wait long to see a specialist, they said I can get referred back anytime by a dentist or doctor so I expect it will be in the next few weeks.

How long OLP will last? Forever. You can get rid of the symptoms but then they can come back up at any time, mine has never gone so I've always had it. I think usually you get 'flare ups' for 6 - 18 months or something along those lines. When I've asked, they told me it will never go and that it's just something that if it gets reaaaally bad that they'll try and manage. But they've never seemed to want to give me anything for it and told me to live with it pretty much. But I'm going to nag them this time because it's becoming unbearable.

Nope, I don't think they know anything about it really - they were supposed to contact the specialist when I was in hospital and it completely went but they didn't bother so I don't think they care that much either unfortunately.

How long have you had it?


01/11/2012 06:17 AM
MiniatureET
Posts: 7
New Member

I am in the UK too. I had to wait ages for my original appointments and the biopsy results took 10 weeks to come back. I think I was diagnosed around the Autumn last year.

Why didnt they tell me that it never goes?! They can sure other autoimmune diseases so why not this one?!

Sounds like you are going through hell at the moment. What are your symptoms?


01/12/2012 02:27 AM
OhLP
Posts: 22
New Member

Ooh, they were probably quick with my appointment etc because where I live has a huge dental hospital.

I have no idea, they should have told you. It can 'go away' but it's not actually gone, you've just not got a 'flare up' of it at that time. Mines never gone, I just get flare ups where it's worse than it usually is. I think for some people, it can be years at a time without any symptoms at all, but that's once they've found something that manages it or removed the 'trigger'.

I constantly have symptoms, which are those white lines, ulcers occasionally and pain when eating/drinking certain things. Mine got worse recently but only flared up for a few days and I'm back to normal (the lines). I have it everywhere in my mouth, but my dentist said people usually only have it in one cheek or their tongue, where do you have it? What symptoms do you have? Have you found anything that could possibly improve it?

I'm thinking it's stress to a certain degree, but how on earth do you completely remove stress from your life?? not possible.

Oh, and I think they can't cure it because they don't know what it is, which is why they don't really have any medications for it at all really. They were shocked the medication I was on for meningitis/encephilitis in hospital got rid of it. So, I don't think they have a clue tbh.

Post edited by: OhLP, at: 01/12/2012 02:38 AM

Post edited by: OhLP, at: 01/12/2012 02:40 AM


01/12/2012 03:04 AM
MiniatureET
Posts: 7
New Member

That makes sense, so it can be dormant but flair up when something triggers it.

My dentist noticed it at the back on my mouth near my molars on both sides. Originally the dentist thought it was my molars rubbing my gums. Now it is working its way down the sides of my tongue which can be painful. It has spread a fair amount in the lats couple of months. Not sure how much worse it will get!

I have just started taking sulphur and my flair up seems to have gone, but I cant see that it would have worked so quickly. I used bonjela for my ulcers and that helped definitely. I dont know if you can use it on your tongue!! The other thing I tried was Manuka honey, taking a spoonful when it was sore. Not sure if this helped or not to be honest. Was still sore so I suggest not. Have you tried anything?

The hosptial discharged me because I had no symptoms, but dont know who I need to see if the ulcers get worse. Dentist or Doctor?

As for stress, there just isnt anything you can do is there?? Quit work!?

I would like to know how liklely it is to spread around my mouth or to other parts of my body. Any ideas?


01/13/2012 02:31 AM
OhLP
Posts: 22
New Member

Aww, well I'm sure it won't get much worse - mines always just been there and only got a tiny bit worse.

Ooh I'll have to try sulphur, I noticed it started to go at one point but I haven't a clue what change I'd made so I can't try again haha. Ooh, I tried lemons (after reading it on the internet, and it made it a million times worse!!) Bonjela tends to hurt my mouth, I'll have to try again though!

If you need referring to a specialist again, you can see your doctor or dentist. I've gone through both before. Dentist is probably quicker and better though, but then you'll have to pay for the appointment just to see them?

I think even if you quit work, you'd have the stress of having to find another job or dealing with money, lol. Unless you go and live in a field with no electricity etc.. can't imagine that being nice though!

I've worried about getting it on my skin before, but touch wood it's not spread or got much worse than when I first had it. I'd probably say it won't change much now.


01/13/2012 02:35 AM
OhLP
Posts: 22
New Member

I've got to be honest, I decided a while ago that if it was between controlling OLP and having things I enjoy, I picked enjoying things.

I don't want to live without having spice, tomatoes, hot things (which I've only recently found out can make it worse, not sure I believe it though) etc.. I'd rather have them and live normally and just put up with the pain occasionally!

I've 100% said there is NO WAY I'll ever take steroids, and most medications are based on them, so looks like I'm stuck there too.


02/06/2012 05:24 PM
owlowl
Posts: 21
New Member

hi, i am new here i find out i have OLP today, mine never flare up yet, will it ? it is on my gum line not the cheek.

i do notice i can not have spicy food,and even a glass of wine, i will dry my mouth up real bad on the next day.is that anything will make it go away.

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