Re: what a mess I am in !!

[Guest guest]

Lynda,

Odd you should post this about your ears.

I have questions.Lately my husband is questioning whether my hearing is decreasing. I have also noticed that I have to have people repeat things so much.

Also, I've noticed that my OUTER ear cartilages are stiff and sore. Have you experienced this?I'm so sorry that you are going through all this. You are so right, people just don't get it about arthritis. I urge everyone to join the Arthritis Foundation and take part in your local walk. I don't know if the AF is in the UK, but if there is such an organization, its good to get involved and get the word out about this devastating disease!, 48, adult onset RA, mom to Rob, 19, juvenile ankylosing spondylitis

----- Original Message -----From: kenneth194542 <lynda.parton@...>Date: Tuesday, February 10, 2009 19:59Subject: what a mess I am in !!Rheumatoid Arthritis > > > Hello -> > I have not posted anything for quite a while as I have been > having a > very difficult time during the last 6 months.> > I suffer from RA and have been taking methotrexate for 2 years > now > and my symptoms have improved. I still get flares and > quite a few > side effects but I am so much better than I was 3 years ago.> > I have just received quite astonishing news though. I have > become > quite deaf in one ear (going deaf in other ear as well now) and > have > been suffering from very severe tinnitus as well. My ENT > consultant > arranged several brain scans for me and lo and behold the > results > have shown that I have a condition called auto-immune ear. > There is > no cure for this save for being given anti-TNF drugs and it > seems > that my deafness will worsen over the years. I am also > going to have > worsening deafness in the other ear, and I am now the very proud > owner of a wonderful digital hearing aid which is absolutely > fantastic. I have also been given tinnitus masking aid > which helps > to try and take my mind off this dreadful tinnitus by putting > another > type of noise into my ear as distraction therapy.> > The most shocking thing though is that when I had my brain scans > the > consultant found that my pituitary gland was shrunken to about > one > sixth of the size it should be !! He has made a > guess that my > immune system has attacked my pituitary and now I have to see an > Endocrinologist regarding my amazing problems !! it seems I am > very > rare. what a laugh. Seems that rheumatoid arthritis > is eating me > away, it's so fantastic you can hardly believe it.> > Then last week, after having had problems with my digestive > system > all winter and having been referred to gastro-enterology, guess > what > has been found - a cyst on my pancreas. I cannot believe > what is > happening to me. I am waiting for further tests but it > seems that > there is major trouble ahead for me. Could be surgery and > combination of chemo and radiotherapy, goodness knows how I > shall > cope with my RA and all.> > I turned 60 last July and it has been downhill all the way > regarding > my health and looks like I have a bit of a battle ahead. > During all > this I have been astounded that so few people outside of the > medical > profession understand that RA can have such devestating effects > on > your body - they seem to think it's just a few aches and pains > and > hey - pull yourself together. This has certainly been a > shock to > them, but I still don't think they fully understand whats > happening > and what we have to put up with.> > I shall let you know what happens - needless to say I am seeing > so > many medical people at the moment and having many tests etc.> I live in the UK and we do have a problem with waiting lists > etc., > but thank goodness treatment and drugs are free here.> > best wishes - Lynda > >

[Guest guest]

Lynda,

I wish you the best as you are going through so much. I hope things get better soon.

I also have started having difficulties with hearing and recently saw an ENT and he is sending me for further testing, checking for auditory processing disorder. I have been on methotrexate injections since 2001, prednisone and take Humira injections, etc.

My troubles started after I took a Lupron Depot injection in 2000, for endometriosis and it caused a toxic reaction in my body.........which has lead to all of my difficulties.

Best of luck,

Clara

From: kenneth194542 <lynda.parton@...>Subject: what a mess I am in !!Rheumatoid Arthritis Date: Tuesday, February 10, 2009, 7:59 PM

Hello -I have not posted anything for quite a while as I have been having a very difficult time during the last 6 months.I suffer from RA and have been taking methotrexate for 2 years now and my symptoms have improved. I still get flares and quite a few side effects but I am so much better than I was 3 years ago.I have just received quite astonishing news though. I have become quite deaf in one ear (going deaf in other ear as well now) and have been suffering from very severe tinnitus as well. My ENT consultant arranged several brain scans for me and lo and behold the results have shown that I have a condition called auto-immune ear. There is no cure for this save for being given anti-TNF drugs and it seems that my deafness will worsen over the years. I am also going to have worsening deafness in the other ear, and I am now the very proud owner of a wonderful digital hearing

aid which is absolutely fantastic. I have also been given tinnitus masking aid which helps to try and take my mind off this dreadful tinnitus by putting another type of noise into my ear as distraction therapy.The most shocking thing though is that when I had my brain scans the consultant found that my pituitary gland was shrunken to about one sixth of the size it should be !! He has made a guess that my immune system has attacked my pituitary and now I have to see an Endocrinologist regarding my amazing problems !! it seems I am very rare. what a laugh. Seems that rheumatoid arthritis is eating me away, it's so fantastic you can hardly believe it.Then last week, after having had problems with my digestive system all winter and having been referred to gastro-enterology, guess what has been found - a cyst on my pancreas. I cannot believe what is happening to me. I am waiting for further

tests but it seems that there is major trouble ahead for me. Could be surgery and combination of chemo and radiotherapy, goodness knows how I shall cope with my RA and all.I turned 60 last July and it has been downhill all the way regarding my health and looks like I have a bit of a battle ahead. During all this I have been astounded that so few people outside of the medical profession understand that RA can have such devestating effects on your body - they seem to think it's just a few aches and pains and hey - pull yourself together. This has certainly been a shock to them, but I still don't think they fully understand whats happening and what we have to put up with.I shall let you know what happens - needless to say I am seeing so many medical people at the moment and having many tests etc.I live in the UK and we do have a problem with waiting lists etc., but thank goodness treatment

and drugs are free here.best wishes - Lynda

[Guest guest]

Dear - I am not suprised to hear this. Being on only a Disease modifier and not a Biologic means that your immune system hyperactivity will systematically attack everything it can being invasive as is its nature. Being on a biologic is very important. I have been on Remicade since 2000 and its works very well for me. It is also a given that 9 times out of 10 your thyroid will become involved. An endocrinologist should be consulted right away. Its timely that you have told us your story. I havent has an infusion in 13 weeks or so and though I feel relatively fine, I have to remember that MTX alone doesnt stop the RA from doing its silent damage. Keep your chin up!!!!! Deborah

On Tue, Feb 10, 2009 at 8:59 PM, kenneth194542 <lynda.parton@...> wrote:

Hello -I have not posted anything for quite a while as I have been having a very difficult time during the last 6 months.I suffer from RA and have been taking methotrexate for 2 years now

and my symptoms have improved. I still get flares and quite a few side effects but I am so much better than I was 3 years ago.I have just received quite astonishing news though. I have become quite deaf in one ear (going deaf in other ear as well now) and have

been suffering from very severe tinnitus as well. My ENT consultant arranged several brain scans for me and lo and behold the results have shown that I have a condition called auto-immune ear. There is no cure for this save for being given anti-TNF drugs and it seems

that my deafness will worsen over the years. I am also going to have worsening deafness in the other ear, and I am now the very proud owner of a wonderful digital hearing aid which is absolutely fantastic. I have also been given tinnitus masking aid which helps

to try and take my mind off this dreadful tinnitus by putting another type of noise into my ear as distraction therapy.The most shocking thing though is that when I had my brain scans the consultant found that my pituitary gland was shrunken to about one

sixth of the size it should be !! He has made a guess that my immune system has attacked my pituitary and now I have to see an Endocrinologist regarding my amazing problems !! it seems I am very rare. what a laugh. Seems that rheumatoid arthritis is eating me

away, it's so fantastic you can hardly believe it.Then last week, after having had problems with my digestive system all winter and having been referred to gastro-enterology, guess what has been found - a cyst on my pancreas. I cannot believe what is

happening to me. I am waiting for further tests but it seems that there is major trouble ahead for me. Could be surgery and combination of chemo and radiotherapy, goodness knows how I shall cope with my RA and all.

I turned 60 last July and it has been downhill all the way regarding my health and looks like I have a bit of a battle ahead. During all this I have been astounded that so few people outside of the medical

profession understand that RA can have such devestating effects on your body - they seem to think it's just a few aches and pains and hey - pull yourself together. This has certainly been a shock to them, but I still don't think they fully understand whats happening

and what we have to put up with.I shall let you know what happens - needless to say I am seeing so many medical people at the moment and having many tests etc.I live in the UK and we do have a problem with waiting lists etc.,

but thank goodness treatment and drugs are free here.best wishes - Lynda

[Guest guest]

Dear ,

If you are having problems with your ears and associated hearing then please take my advice and seek assessment early rather than later. I suffered so badly with tinnitus it nearly drove me mad!! I have such caring audiology staff here in Shropshire, UK and they have helped me so much. How my problem started was I felt like my ears were full and uncomfortable all of the time, then they became itchy and sore and then hey presto !! the tinnitus started. My tinnitus is what is called pulsatile which means it sounds like my heart is beating about 20 times louder in my ear. I could not sleep, could not relax and the more pain I suffered with my RA the more my body became stressed and the louder the tinnitus.

I thought I had ear wax or something and in the end it was found to be auto-immune ear disease. The audiologist I see is so caring, she said that tinnitus has devastating effects of people and she is so sympathetic and that helps so much. It is really hard to explain to others the terrible effect this is having on you, you can't expect people to understand really unless they are sufferers themselves. Anyway - I am getting marvellous help now, but wish I had sought advice earlier, so please get advice on your hearing problem soon

best wishes - Lynda

From: and Schulz <snooksmama@...>Subject: Re: what a mess I am in !!Rheumatoid Arthritis Date: Wednesday, 11 February, 2009, 3:15 AM

Lynda,

Odd you should post this about your ears.

I have questions.Lately my husband is questioning whether my hearing is decreasing. I have also noticed that I have to have people repeat things so much.

Also, I've noticed that my OUTER ear cartilages are stiff and sore. Have you experienced this?I'm so sorry that you are going through all this. You are so right, people just don't get it about arthritis. I urge everyone to join the Arthritis Foundation and take part in your local walk. I don't know if the AF is in the UK, but if there is such an organization, its good to get involved and get the word out about this devastating disease!, 48, adult onset RA, mom to Rob, 19, juvenile ankylosing spondylitis

----- Original Message -----From: kenneth194542 <lynda.parton@ btinternet. com>Date: Tuesday, February 10, 2009 19:59Subject: [rheumatoid_ arthritis] what a mess I am in !!rheumatoid_arthriti sgroups (DOT) com> > > Hello -> > I have not posted anything for quite a while as I have been > having a > very difficult time during the last 6 months.> > I suffer from RA and have been taking methotrexate for 2 years > now > and my symptoms have improved. I still get flares and > quite a few > side effects but I am so much better than I was 3 years ago.> > I have just received quite astonishing news though. I have > become > quite deaf in one ear (going deaf in other ear as well now) and > have > been suffering from very severe tinnitus as well. My ENT > consultant

> arranged several brain scans for me and lo and behold the > results > have shown that I have a condition called auto-immune ear. > There is > no cure for this save for being given anti-TNF drugs and it > seems > that my deafness will worsen over the years. I am also > going to have > worsening deafness in the other ear, and I am now the very proud > owner of a wonderful digital hearing aid which is absolutely > fantastic. I have also been given tinnitus masking aid > which helps > to try and take my mind off this dreadful tinnitus by putting > another > type of noise into my ear as distraction therapy.> > The most shocking thing though is that when I had my brain scans > the > consultant found that my pituitary gland was shrunken to about > one > sixth of the size it should be

!! He has made a > guess that my > immune system has attacked my pituitary and now I have to see an > Endocrinologist regarding my amazing problems !! it seems I am > very > rare. what a laugh. Seems that rheumatoid arthritis > is eating me > away, it's so fantastic you can hardly believe it.> > Then last week, after having had problems with my digestive > system > all winter and having been referred to gastro-enterology, guess > what > has been found - a cyst on my pancreas. I cannot believe > what is > happening to me. I am waiting for further tests but it > seems that > there is major trouble ahead for me. Could be surgery and > combination of chemo and radiotherapy, goodness knows how I > shall > cope with my RA and all.> > I turned 60 last July and it has

been downhill all the way > regarding > my health and looks like I have a bit of a battle ahead. > During all > this I have been astounded that so few people outside of the > medical > profession understand that RA can have such devestating effects > on > your body - they seem to think it's just a few aches and pains > and > hey - pull yourself together. This has certainly been a > shock to > them, but I still don't think they fully understand whats > happening > and what we have to put up with.> > I shall let you know what happens - needless to say I am seeing > so > many medical people at the moment and having many tests etc.> I live in the UK and we do have a problem with waiting lists > etc., > but thank goodness treatment and drugs are free here.> > best wishes - Lynda

> >

[Guest guest]

Dear Deborah,

Here in England we are finding it so hard to get on to anti TNF drugs. we have a bit of a post code lottery with our national health service and some parts of the country are able to get it freely and others not. Unfortunately I am one of the unlucky ones.

In the event I have just had to come off the MTX and also my diabetes medication because of the impending tests on my pancreas cyst, so I know that in addition to my endocrine problems I am now heading for a nightmare flare with my joints! I feel so ill at the moment and throughly depressed so I am trying to pick myself up once again and keep going for my husband's sake.

There is one funny thing I can say even though my life is a mess at the moment. I have just recently been given my wonderful new hearing aid/tinnitus masker and was out doing some grocery shopping last week. I had just entered the store and lo and behold I had voices booming down my ear (the one with the aid in) I just froze dead and must have looked like a very strange person standing there !! my husband said - what's the matter - what could I say - I have strange voices in my and there was no-one around but him.

Eventually the voices stopped and when I came out of the store there was a police car outside and and a policeman talking on his radio - I had picked up every word he had said on my hearing aid !! we laughed and laughed. seems like I am going to have some very unusual experiences ahead with my hearing aid !!

best wishes from a very cold and ice bound Shropshire, England - Lynda

Hello -I have not posted anything for quite a while as I have been having a very difficult time during the last 6 months.I suffer from RA and have been taking methotrexate for 2 years now and my symptoms have improved. I still get flares and quite a few side effects but I am so much better than I was 3 years ago.I have just received quite astonishing news though. I have become quite deaf in one ear (going deaf in other ear as well now) and have been suffering from very severe tinnitus as well. My ENT consultant arranged several brain scans for me and lo and behold the results have shown that I have a condition called auto-immune ear. There is no cure for this save for being given anti-TNF drugs and it seems that my deafness will worsen over the years. I am also going to have worsening deafness in the other ear, and I am now the very proud owner of a wonderful digital hearing

aid which is absolutely fantastic. I have also been given tinnitus masking aid which helps to try and take my mind off this dreadful tinnitus by putting another type of noise into my ear as distraction therapy.The most shocking thing though is that when I had my brain scans the consultant found that my pituitary gland was shrunken to about one sixth of the size it should be !! He has made a guess that my immune system has attacked my pituitary and now I have to see an Endocrinologist regarding my amazing problems !! it seems I am very rare. what a laugh. Seems that rheumatoid arthritis is eating me away, it's so fantastic you can hardly believe it.Then last week, after having had problems with my digestive system all winter and having been referred to gastro-enterology, guess what has been found - a cyst on my pancreas. I cannot believe what is happening to me. I am waiting for further

tests but it seems that there is major trouble ahead for me. Could be surgery and combination of chemo and radiotherapy, goodness knows how I shall cope with my RA and all.I turned 60 last July and it has been downhill all the way regarding my health and looks like I have a bit of a battle ahead. During all this I have been astounded that so few people outside of the medical profession understand that RA can have such devestating effects on your body - they seem to think it's just a few aches and pains and hey - pull yourself together. This has certainly been a shock to them, but I still don't think they fully understand whats happening and what we have to put up with.I shall let you know what happens - needless to say I am seeing so many medical people at the moment and having many tests etc.I live in the UK and we do have a problem with waiting lists etc., but thank goodness treatment

and drugs are free here.best wishes - Lynda

[Guest guest]

>

> Lynda,

> Odd you should post this about your ears.

> I have questions.

> Lately my husband is questioning whether my hearing is decreasing.

My husband told me the same thing and I went to the doctor. He flushed

about five pounds of earwax out of my ears and my hearing improved

dramatically LOL

It seems I produce an abnormal amount of ear wax and have to have my

ears flushed about every six months.

Sharon

[Guest guest]

I've noticed a difference in my hearing the last 2 1/2 years. I went to

the Dr. about it 2 years ago,and I had a lot of wax build-up. My

hearing immediately improved, but I've been having problems again the

last 2 months. I'm not totally understanding the comments people are

making regarding a connection between RA and hearing loss. Are people

saying ear wax build-up is associated with RA or the meds taken for it?

Are people saying the immune system attacking our bodies can cause

hearing loss?

I go see my RA Dr in two weeks. I guess I'd better ask him about it. My

husband told me last week I should go and see my regular doctor about

my concerns over my hearing because he could tell I was worried. I

admit I'm afraid to do so because I don't want to deal with it if I

find out I'm losing my hearing.

Jean

[Guest guest]

My Hearing Consultant has told me that I have a condition called 'Auto-immune ear' which is causing my deafness. It appears that my body is attacking itself, just like the damage caused to our joints in rheumatoid arthritis. It is quite rare to have this condition, and there is no cure. I am hoping to go on to an anti-TNF drug soon, trying to get funding through our National Health service here in the UK. I have been taking MTX for 3 years now for my RA. Apparently anti-TNF drugs may slow down the process of my hearing loss, meanwhile I have my new hearing aid which has been a wonderful help to me. By the way my consultant told me that they are seeing quite a lot more cases of auto-immune ear these days, so you should get checked out. The immune problem does not cause ear wax, but can make us deaf, and with me it happened very quickly !

best wishes - Lynda

From: hookedonpopcorn <hookedonpopcorn@...>Subject: Re: what a mess I am in !!Rheumatoid Arthritis Date: Monday, 16 February, 2009, 7:44 AM

I've noticed a difference in my hearing the last 2 1/2 years. I went to the Dr. about it 2 years ago,and I had a lot of wax build-up. My hearing immediately improved, but I've been having problems again the last 2 months. I'm not totally understanding the comments people are making regarding a connection between RA and hearing loss. Are people saying ear wax build-up is associated with RA or the meds taken for it? Are people saying the immune system attacking our bodies can cause hearing loss?I go see my RA Dr in two weeks. I guess I'd better ask him about it. My husband told me last week I should go and see my regular doctor about my concerns over my hearing because he could tell I was worried. I admit I'm afraid to do so because I don't want to deal with it if I find out I'm losing my hearing.Jean

[Guest guest]

> the Dr. about it 2 years ago,and I had a lot of wax build-up. My

> hearing immediately improved, but I've been having problems again the

> last 2 months. Are people

> saying ear wax build-up is associated with RA or the meds taken for

it?

No the earwax buildup is a completely separate problem. Some people

just make a LOT of earwax. I have to have mine flushed about every six

months. I tried the home flushing thingies, but didn't have much

success. You may simply have built up a lot of wax again, or you may

have another problem

Sharon