Wegener's spreading its wings.

[lfu2]

70 year old male with Wegener's

I was diagnosed with Cranial Ateritis in 2011 by my GP and quickly saw a consultant who changed that to Vasculitis. Over the following year or so that was changed again to Wegener's and also again to include brain (lining) involvement resulting in partial failure of my right cranial nerves. The disease proceeded in the almost normal way.... right side headache, sudden deafness in right ear, sinus problems, facial and ear pain and then a suspected TIA resulting in the right vocal cord being paralysed, tongue deviation and some general loss of control on my right side. Apart from the vocal cord, almost all back to normal now. The disease only affected my right side.... you could draw a line from my forehead through my nose to my groin and the only problems are on the right side. I had the full range of scans etc.

I also have 2 hearing aids... my left ear is due to age related deafness and my right ear to nerve deafness. BUT I am not complaining.... I feel sort of alright.... aches and niggles and all the other things that Wegener's brings on; I am an optimist and very rarely feel down.

About two months ago I began to get left sided headaches and realised that they were not just normal headaches but reminiscent of the earlier right sided ones I got before. I also had some congestion in my left lung. Then my hearing in the left ear diminished along with an increase in pain, and at that point I rang the Rheumatology dept.... I got in quickly ... yesterday to be exact, and I was seen by a delightful young lady doctor whom I have to say was very clued up on the subject. I read through my bulleted notes to her and she examined me and interrogated me very thoroughly. She then summoned 'God' (Prof Emery) chief consultant, who also checked me over and questioned me.

The result of all this is that they feel the Wegener's is moving to include the left side of my body, which is what I thought was happening, and although it is good in a way to be proved right, it's also bad news. I am dreading the further loss of hearing in my left ear. My next infusion of Rituximab will be brought forward, probably within the next fortnight, and I have to have a new round of tests. My steroids have been increased from 10mg to 40mg with a progressive taper after Rituximab.

All this just when I thought I was getting used it and feeling fairly good. Don't get me wrong, I don't feel ill or nauseated, just a bit pi55ed off.

I am in Leeds and being seen at Chapel Allerton hospital. The team there is A1... you couldn't ask for better... they talk to you (not at you) and they listen to you. They take your opinions to heart and spend time explaining what their plans are for you. I even had a phone call from the young lady doctor this afternoon asking to clarify a point.

Yet another step in this big adventure.

Apologies... I don't post often but when I do it is usually lengthy.

[medway-lady]

Thank you for your very interesting post. I've learn't a lot and I have the utmost admiration for you.

[lfu2 in reply to medway-lady]

Thank you Medway-Lady

[sylvi]

I have never heard of what is wrong with you so i am unable to say anything about it. I can send hugs and support.xxxx

[lfu2 in reply to sylvi]

Thank you Sylvi. You have your own problems at the moment and I wish you well with them. It is so good to know that people who are suffering themselves can reach out and offer support. Thank you again.

[Hidden]

Hi ifu2. I'm sorry your Wegner's is putting you through such an ongoing struggle. I have had quite similar but milder symptoms with RA and Sjogren's and possible Vasculitis/ Scleroderma, so I know where you are coming from. However others here may not know because you have posted this on the RA HealthUnlocked rather than the Vasculitis UK one.

All you need to do is go to edit post - the > in the right hand corner below your post. Copy it and then paste to re-post on the VUK community. Meanwhile it is good that we here learn more about Wegner's Granulamatosis - a very rare and severe form of Vasculitis. Thanks.

[lfu2]

Hi Twitchy, I always read your posts with interest. You certainly have been through the mill recently and not only with your health. You seem to be continually moving between old and new houses. I hope it all gets sorted out soon.

I realised the mistake I had made when I first posted this so I just copied and pasted to VUK.

Thank you for your concern... 'Et deinceps sursum'

[Hidden in reply to lfu2]

Thanks - I like your refusal to feel defeated by your disease and do hope your doctors can find away of slowing down the Wegner's - but even in deafness (I know it's not the same but both of my sisters were born profoundly deaf so I sometimes think I need to hear for both of them too!) your positive attitude will ensure you make the best of what you have I'm sure. Onwards and upwards (a lazy translation of your Latin!)

[lfu2 in reply to Hidden]

Thank you for that Twitchy.

[Hidden]

Holy Mack. You are the epitomy of the kind of attitude I want to channel as I go through my own health struggles.

Keep up the good fight. You got this.

I looked out the window.of.my house to see a woman around 70 years old....I hope in 20 years I will be walking still too. If not then I will do whatever I can do to the nth of my abilities. I will try to channel your spirit. You have good positive vibes.

[lfu2]

Thank you for that Stewnamie. I have always believed in the good in everything and everybody and in general I have rarely been let down. You only need to read through this forum to feel the good vibes from everybody. I wish you well and better health.