Advice Please

[Joanne]

Hi, I haven't posted for a while but I'd really appreciate some advice if possible. I was diagnosed with long-standing Wegener's in Feb 2014 by ENT, and then informed in May 2014 by Rheumatology that after all the tests they'd run, Wegener's was not indicated. The last biopsy/bloods/scans/x-rays were done in 2012/2013 and I have had none since. I was absolutely devastated as my sinus symptoms had been on-going since 2005/6 and after surgery became much, much worse. I was also diagnosed with M.E. in 2009 which has nothing to do with the sinus problems, but makes me feel very unwell indeed. I now have a very large nasal perforation and destruction, copious bloody nasal crusting, a complete loss of smell and taste, constantly watering eyes, hearing loss and tinnitus in my left ear which is constantly blocked, and I now need a hearing aid. I'm 47, so not best pleased! I have trouble swallowing, tablets often get lodged and I feel like I have a permanent lump at the back of my throat. I have a recurring dry cough and often choke on saliva, food and drink and also the crusting which forms right at the back of my throat as well as permanent catarrh. My tongue is very 'dry' and uncomfortable and I sometimes get sore, red patches on my tongue and sore and swollen gums. I have a permanent 'bitter' taste or sensation in my mouth which never goes away, no matter how rigorous my dental hygiene routine, and despite drinking well over 2 litres of water per day. Rheumatoid/thyroid and autoimmune conditions run in my family too.

I asked for a second opinion to see an ENT consultant and have been given an appointment in Manchester UK with Rheumatology for reasons that have not been explained? If I don't have Wegener's I am at a loss as to why my wishes have been ignored and feel this will be a complete waste of my time yet again. I went back to the ENT department recently for a explanation from the consultant who 'misdiagnosed' me, but was seen by a completely new doctor who clearly hadn't got a clue about my case, who told me my hearing was worse, which I knew already and now I have to go for a scan. He prescribed a hearing aid and a nasal steroid spray which made my symptoms worse in the past and which has had exactly the same effect yet again, causing copious bleeding and my left ear to be blocked even more. I spoke to a lady from Patient Liaison who was very kind but I do not feel that I can ever trust this ENT or NHS Trust again and really would like to know my rights and if it is worth me going to the Manchester Rheumatology appointment? I am so low that I feel like ending it all as this has been going on for so long now that my quality of life if so bad now that I don't see much point in going on and dread any further appointments. Sorry to be so depressing but I really am at rock bottom.

Joanne

[Psyborg]

Joanne, that sure sounds like Wegener's to me. Blood tests are frequently inconclusive for people, and if you have that number of symptoms a second opinion should be warranted. Hopefully a UK member will see this and have advice of how to proceed with treatment there...anything I'd suggest would be pointless I'm guessing as I know things work differently with your health system. I hope you'll get some answers soon.

[drz]

Since one doctor does not seem able to offer any helpful treatment i would certainly go see any other doctor you can to get another perspective and hopefully some better help. Can you self refer to another doctor or clinic for evaluation of your problems till you find some one who understand how to help you feel better? Here is USA we would often take such a case to Mayo clinic or some other well known and highly ranked clinic known for having expertise in diagnosing and treating difficult cases.

[Dirty Don]

This ENT in particular and many ENTs have never seen WG inside. Thus their dxes tend to be about what they know and see...and what they see isn't what they're looking for...does that make sense. In short, many docs tend to dx what they've been taught to dx...simple. Most don't see outside the box...and we are outside most boxes! I'd get another doc and try to get that new rheumy at the new hospital to look deeper at the symptoms. You definitely are flaring. Best to you.

[annekat]

I concur with everyone else, you should go ahead and see the rheumy in Manchester. I hope he or she will be able to give you some answers and get you on the right track with proper treatment. This is an intolerable situation, but you should not give up. There must be some answers. I hope and pray you get some relief, and please keep us updated.

[gilders]

Hi Joanne
I'm so sorry to hear about health and your general mental wellbeing.
I'm also from UK and must admit I've noticed a big change in the NHS. I have always trusted them with my life, but now wish I could afford to go private.
Having said that, do go see the DR in Manchester. Although your symptoms sound like Wegeners, even if it's not you NEED a diagnosis AND treatment.

The last few months I have been referred to various specialists on the NHS. Not once have I seen the actual specialist I've been referred to. It's always one of his/her colleagues.

Do let us know how you get on in Manchester. I hope the appointment is soon.

[Joanne]

Hi, Thanks to everyone who replied to my thread. Can't tell you how much I appreciate all the replies. I will definitely go to the Rheumatology appointment at Manchester. I have been told that their staff travel all over the world and that it's a teaching and research hospital too, I think so fingers crossed. Feeling so down as I was prescribed anti-depressants which made me feel sooooooooo ill I can't say. Made me realise that I can feel a LOT worse, but pretty fed up as I need to lift my mood. I have a scan on Friday so hopefully that will help. Have lost all faith in the NHS, but can't afford to go private and the appointment in Manchester is a second opinion so I'm fortunate to have got that as it's not a given. Was sure I had a diagnosis at last as the ENT consultant who diagnosed me said he had only seen one case in 20 years but that I was the third person that month he'd seen with Wegener's. Anyway will keep going and thanks so much for all your support, it means a lot. Will keep you updated.
Joanne

[Jennie]

Hi Joanne

Sorry you are going thru all this. I have had similar symptoms with my throat......trouble swallowing, choking on food, feeling like something was stuck back there. It took referrals to 3 different ENT's and various other specialists to get a diagnosis of Wegener's. The first two ENT's said they had never seen anything like it when they took a look with the camera down my throat. Finally I got referred to my current ENT who ran all kinds of tests and biopsies and finally a diagnosis of Wegener's was made. I have been on Imuran for two years now and my throat continues to improve. So far I have been lucky to not have sinus issues.

I hope that you will go to your appointment in Manchester and keep pushing for a second/third/fourth ENT opinion if necessary to get the answers you need. There is someone out there who can help! Please keep trying. We are all here for you.

Jennie

[mrtmeo]

Contact the vasculitis foundation for a vascuitis specialist right away.
Vasculitis Foundation (http://www.vasculitisfoundation.org/)
Also, it will be helpful to get your vitamin D levels into the optimum range of 60-80ng/mL.

[LisaT]

Sorry you're having such a tough time. Don't let your emotional/mental well being slip through the cracks. It sounds as though aside from medication you could benefit from speaking with a professional. I say that with no judgment whatsoever, and have just asked my doc for a referral for this purpose. The disease (or symptoms if it's not this exact disease, although it certainly sounds like it) take a heavy emotional toll and we need to treat that in addition to the physical symptoms. I hope you get some more concrete answers and help.

[drz]

Hi Joanne

Sorry you are going thru all this. I have had similar symptoms with my throat......trouble swallowing, choking on food, feeling like something was stuck back there. It took referrals to 3 different ENT's and various other specialists to get a diagnosis of Wegener's. The first two ENT's said they had never seen anything like it when they took a look with the camera down my throat. Finally I got referred to my current ENT who ran all kinds of tests and biopsies and finally a diagnosis of Wegener's was made. I have been on Imuran for two years now and my throat continues to improve. So far I have been lucky to not have sinus issues.

I hope that you will go to your appointment in Manchester and keep pushing for a second/third/fourth ENT opinion if necessary to get the answers you need. There is someone out there who can help! Please keep trying. We are all here for you.

Jennie

I agree that it is hard to trust a doctor to recognize Wegs in your throat if they have never seen such a case or even heard of the disease. I just had this experience with local surgeon who scoped my esophagus but still didn't think it necessary to send my biopsy to Mayo as I requested even though he had never heard of GPA. It is sad and scary, but important to remember that some times we have to do a lot of searching and try a lot of doctors till we are lucky enough to find one that recognizes our symptoms and can diagnose us correctly, and hopefully has some experience in treating Wegs too, or at least has the good sense to consult with recognized expert on our treatment. That is why the most important common theme on this forum is to get oneself to center that is recognized as having expertise in diagnosing and treating Wegs. It is literally a life and death matter---OURS!

[chris.wg]

Sorry I'm late to the thread. My advice follows very close to the rest though. I dose sound like a flare to me. See your specialist. But let them do the diagnosis especially if he is familiar with GPA . Since this is a multi symptom disease it is possible for misdiagnosis. Having said that its important to make sure he dose actually diagnose you. Even if it isn't GPA it sounds like you need treatment of some form it isn't going to go away on its own. My question for you is has anyone put you on any drugs most particularly Prednisone. We all hate it but the fact is your symptoms even if you don't have GPA mimic the flare. And I would bet anything Prednisone with the proper dosage will at least start to control the symptoms until they confirm your diagnosis.