Originally Posted by
lfu2
All this site makes for interesting reading.... yes I have got brain involvement.
I retired in September 2010. I had 6 months of normal health. April 2011... Sudden deafness right ear. Accumulating in fierce headaches. I was taking some strong prescribed pain relief but it was just reducing the pain. My GP quickly diagnosed Cranial Arteritis and put me on steroids. Brilliant. No pain. I found a consultant dealing with Arteritis and got a referral to him. Confirmed diagnosis as Arteritis/Vasculitis. Upped the steroids and arranged chemo... 2 courses Cyclophosphamide backed up by Methotrexate.
Move on... over the next 24 months....Lost my voice and had difficulty swallowing... endoscope showed paralysis of right vocal cord. Numerous tests by neurologist showed that the brain lining was thickening and compressing the cranial nerves on the right side..... resulting in problems with hearing, sight, sinuses, crooked tongue, taste, swallowing, speech, right arm movement and sundry other things. Diagnosed as Neuro-Sarcoid/Vasculitis. No evidence of stroke. August 2013- Diagnosis changed to include Wegener's... Dec 2013.... trouble breathing and beginning to have a pronounced cough. Chemo changed to Rituximab.... still with Methotrexate. Continued tests showed among other things, a narrowing of the trachea. Steroids upped to 40mg again.... Jan/Feb 2014- lung involvement. Wheezing/ruttling.... and a disgusting cough. Steroids reducing.... two instances of lung infections. Steroids down to 12.5mg now and beginning to feel pain in my leg joints and muscles, desperately fatigued, but I am feeling better in myself. I can't remember the amount of scans I have had, CT, MRI, PET, x-rays, scopes up and down, biopsies, and general proddings and pokings. This all sounds terrible, but if you are reading this then you are aware of the symptoms of Wegener's. I am very much an optimist, but at times I have been pulled down by these ongoing processes, wondering if there ever is going to be an end to it, and when can I get my life back. Then I read of the sufferings of other people on this forum and realise that I have got it fairly mild.
Present day.... I have lost the hearing in my right ear and have vastly reduced hearing in my left ear. I have glaucoma in both eyes and the beginning of cataracts due to high steroid usage.I seem to pick up any infection going and probably will continue to do so until my natural immune system kicks back in and the steroids get below 7.5mg. My feet feel as if they belong to someone else.... on the verge of pins and needles and cramp all the time, making it painful to walk. And ongoing difficulties with breathing and coughing. No change with right vocal cord which makes it difficult to cough and sneeze. Cannot shout at all and sometimes my voice goes completely.
Sorry for this long tirade. It's comforting knowing that the people that read this will understand what I am talking about.
LFU2
Bookmarks