Mouth symptoms

[Joanne]

Hi, I am a new member and wondered if anyone on the forum has experienced a complete loss of smell and an inability to taste any flavours like myself. I can differentiate between bitter, sweet, salty and sour, and even that is diminished, and I have a permanent 'bitter' sensation in my mouth that I can only describe as feeling as if someone sprayed some very strong rank perfume into my mouth! This gets worse during my time of the month for some reason. I sometimes get red patches on my tongue which are quite sore, and come and go. I can't breath through my nose very well anymore, which I believe has not helped my teeth and gums either, and one of my bottom teeth has crumbled. Despite bloody crusting, nasal perforation and destruction, blocked ears, tinnitus, voice changes, trouble swallowing, very debilitating joint and muscle pain etc, etc I was told yesterday that I don't have WG despite being diagnosed with WG in February by ENT. Talk about confused? I am! Rheumatologist said yesterday that all the tests showed nothing for Wegener's and a nasal biopsy in 2012 was inconclusive. There is no inflammation present, so I am really wondering what is causing all the pain as this is really getting me down as well as the chronic fatigue. Are these common WG symptoms? I have had no tests of any kind for well over a year and was referred again to Rheumatology by ENT who diagnosed WG in Feb after an examination of my nose. I am now seeking a second opinion and a referral to another ENT so I want to educate myself as much as I can as I feel pretty dazed and confused at the moment, and in terms of treatment, getting absolutely nowhere.

[Titus3:2]

Joanne,welcome to the forum.I am sorry that you have been having a very hard time.With the type of nasal tract destruction you have described ,it certainly would not be uncommon to suffer loss of taste or smell.I had to look up M.E.You sure don't need any other medical problems.The nasal discharge you are having,and hearing loss is very common with WG,and it is very often misdiagnosed as sinusitis,rhinitis,and even swimmers ear.I hope some of your fellow countrymen will chime in and direct you to a specialist.You should be as aggressive as you can .We are here for you.

[annekat]

I have lost sense of smell but not taste and am not suffering the mouth issues that you are. Mouth sores and gum soreness early on were cleared up with treatment. It must be good weather in the UK right now.... where are those English members? Sam (freakyschizogirl) is on now or just was so maybe will catch up with you, but this is a little later than your post. They are out there and will materialize! You definitely need some referrals and there are good WG docs in the UK. You can check this list: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/) but there may well be others.

[LisaT]

Hi, I am a new member and wondered if anyone on the forum has experienced a complete loss of smell and an inability to taste any flavours like myself. I can differentiate between bitter, sweet, salty and sour, and even that is diminished, and I have a permanent 'bitter' sensation in my mouth that I can only describe as feeling as if someone sprayed some very strong rank perfume into my mouth! This gets worse during my time of the month for some reason. I sometimes get red patches on my tongue which are quite sore, and come and go. I can't breath through my nose very well anymore, which I believe has not helped my teeth and gums either, and one of my bottom teeth has crumbled. Despite bloody crusting, nasal perforation and destruction, blocked ears, tinnitus, voice changes, trouble swallowing, very debilitating joint and muscle pain etc, etc I was told yesterday that I don't have WG despite being diagnosed with WG in February by ENT. Talk about confused? I am! Rheumatologist said yesterday that all the tests showed nothing for Wegener's and a nasal biopsy in 2012 was inconclusive. There is no inflammation present, so I am really wondering what is causing all the pain as this is really getting me down as well as the chronic fatigue. Are these common WG symptoms? I have had no tests of any kind for well over a year and was referred again to Rheumatology by ENT who diagnosed WG in Feb after an examination of my nose. I am now seeking a second opinion and a referral to another ENT so I want to educate myself as much as I can as I feel pretty dazed and confused at the moment, and in terms of treatment, getting absolutely nowhere.

Hi Joanne, in my experience the symptoms of autoimmune diseases can 'smoulder' for years before the bloodwork and other tests allow for a definitive diagnosis, and you can also be diagnosed without the usual blood markers, since these diseases can present so differently in different people. I've heard of sero-negative RA, and one ENT has diagnosed me with WG despite my being ANCA-negative. This dx was based on my symptoms; no biopsies thus far. Since the meds have helped somewhat with my subglottic stenosis and coughing/choking, it seems to support the diagnosis. Since you are a person who is suffering and not just a set of numbers, you need a doc whose head is not 'where the sun don't shine' and will treat you as such. They need to HELP you regardless of what label they put on your symptoms. If the treatment for WG makes you feel better and halts the erosion of your nasal tissues, you need it, period. I hope you demand better treatment until you get it. Ask the doc what they would recommend if you were their child/sister/wife. Probably not waiting another year to see if your numbers or test results qualify you for some sort of better treatment. Grrrr. Angry on your behalf.:predrage: Sometimes I wish we could visit our symptoms upon others just for a few hours or a day so they could have some understanding or empathy before making (or not making) decisions affecting our lives and our treatment! I know it's a slog but if you keep pushing, you will get there. Don't give up and don't let anyone make you feel s though you are a bother for asking for proper care. You deserve it and need it. Hang in there!

[LisaT]

I just realized my post in no way answered your original question. Although I have some of the usual nose problems I've not experienced loss of smell or taste.

[Joanne]

I will definitely demand better treatment and it's funny the point made about asking the doc what would they do if it was their child/sister/wife etc as that's exactly what I am going to do from now on! I didn't bother going to see any GP's for over 14 months until February this year as I had a sinus/chest/ear infection that floored me and I needed antibiotics so registered with a new GP and asked for another referral to ENT as I nearly went completely deaf in my left ear and the pressure was intense,even after the antibiotics had cleared the infection up. I promise I won't give up and I too wish we could visit our symptoms on others just to let them know what's it's really like. I will keep pushing though and it's been brilliant speaking to all of the lovely members on this forum and getting some support from people who have tons of knowledge and personal experience. I remember when I was well and full of beans to how I feel now and there is a world of difference and I won't give up! Hope to hear from UK members soon and thanks to everyone yet again for all your input.