Wegener's Granulomatosis destroys your senses, all of them. In my case it started with the sense of sound leaving me partially deaf most of the time and completely deaf the rest of the time. When I had partial hearing I had what they call 'hard of hearing', that means that you can't always identify the sounds you hear and you have no idea where they are coming from. All of these symptoms are present at one time or another, there is never a moment when everything works properly. Sight, strange things will happen to your eyes and sight. My vision, now, is very poor, I was blind for a year and then had an almost complete eye transplant from a donor, and my sight was returned. Not perfect but I wasn't complaining. Since this disease runs around the body eating and destroying bone, membrane, muscle and pretty much whatever it desires. It started on my sinus cavity and jaw which included the membrane around my eye lids which made them stick to my eyes. I also lost my depth perception. The sense of smell was destroyed for several years during which my kidneys were not functioning well. The general life of this disease is five years if you are diagnosed and treated properly, but they still don't seem to know what 'properly' is, so they just pump you full of strong steroids which practically kill you anyway. When you kidneys don't function properly everything tastes and smell metallic or you only smell the bad things and you never really know if what you smell is real or maybe you have no smell at all. Remember that all of these symptoms come on and off and around and around whenever it suits them. My case is a little different than most because I had another rare disease before Wegener's. I had Rhodotorula, a fungus in the blood, that you get in the hospital, very hard to detect, and it moves slowly through the blood destroying the heart and kidneys, so that may be why my symptoms are a little different than others. Since there are so few of us they don't really know, I feel that having the Rhodatarula first made me more susceptible to getting the Wegener's. That is just a personal opinion and I have no medical evidence. You would think that the sense of touch was pretty hard to mess with but no, it found a wonderful way of damaging all of the nerve endings and my fingers, toes and ears. Something that had not been seen yet by any hospital that I went to, which were many. The skin also cracks and the nails grow funny but definitely leaving you without a sense of touch. This again comes and goes. Next on Wegener's list are the kidneys, complete destruction over a long period of time causing everything from muscle cramps, bone pain, tiredness. Loss of tendon and ligaments in the joints, causes partial dislocation of all of the joints at varying times. Like the ankle, knee, hip, shoulder, wrist and - yes - even the jaw. They all seem to go back into place after a series of painful hours or days. The last supposed stages of Wegener's are the destruction of both the trachea and the lungs. This has already started on me by making holes in the trachea making each time harder to learn to speak, swallow or chew, but each time you get the hang of it. The hardest part of this disease for me besides the disfiguration, has been the three or four times that these things have all happened at the same time. I haven't yet mentioned the chronic arrhythmia and anaemia. Yes, I have those too. I feel like I can cope pretty well most of the time and then when everything goes on the fritz at once it is a bit too much to handle. Fortunately until now these complete meltdowns have only lasted a few weeks at a time and I go back to having just one or two of the symptoms.
A few years ago I discovered that riding and being around the horses help to make me feel better. This was something I began to study in depth and after several years have come up with a therapy that really works for me, and some of the benefits are even long term not short. Some of my Doctor's prescriptions actually carry a note about riding the horse. I decided to write about what I feel because so little is known about this disease and the more I can help anyone else with it, the better, also because I just finished a one month complete shut down of my whole system, and I was very frightened and had no one to discuss it with. I didn't know what to do or what my chance of survival was and it was the not knowing rather than the pain that made it harder to deal with. I need someone to explain what will happen, they probably don't know either. My new doctor won't talk to me or even touch me.. I have way out lived their expectations, I am sure it is through the love of my family and my horse. I lose more of my body, especially my face, every day and I just wonder how long can I can hold on. My upper jaw is gone and now in the last few weeks I have started to lose the hard palate making it almost impossible to wear my prosthetic plate.
I think I should point out that my case is slightly different than others (I guess all cases are different) because I started by having re-constructive surgery for a smashed nose and cracked jaw around 2002 and received some very bad treatment for the first year. In my opinion, I was used as a guinea pig for an experimental new type of transplant that went terribly wrong. I have since met three other people who had the same problem as I did and the same doctor and same experimental transplant, without success. None of them had Wegener's. It is at the time, I was moved to a better hospital to fix the damage, that we started to see symptoms of Wegener's. Every time they would replace something the virus would come and eat all of the skin and bone around the area, leaving me in much worse shape than when I started, but since we didn't know what it was until years later we just kept operating. I have to say that my treatment here in Spain, except for the first year, was extraordinary and very good . I spoke to another Wegener's sufferer, she is being treated in America, and she is now being given exactly what they gave me six years ago, down to the quantity, that in the end never worked, which she is just finding out now.
(Posted on Wegener's)