Have you suffered any permanent damage or di... - Vasculitis UK
Have you suffered any permanent damage or disability, which you think could have avoided, if your condition had been diagnosed sooner?
Suzym2uModeratorVasculitis UK67 VotersMulti choice reply option has been activated
I ticked lots of the boxes, because my vasculitis is neurological, which causes a huge range of problems. And by the time I was diagnosed - 3 years after falling ill - a lot of irreversible damage had been done. Including problems with vision, hearing, speech, balance, memory, concentration, coordination, bladder incontinence (very severe - off the urologist's scale of badness), and many others that I can't remember right now. Oh and huge fatigue, plus sleeping for up to 17 hours every day cos of the brain damage.
I have saddle nose but also have permanent hoarseness after damage to my vocal chords.
I am about to have a hip replacement on Wednesday. This was brought on by my use of steroids. Steroids kept me alive but with grim consequences.
Also Severe arthritis which restricts my ability to do simple tasks like preparing a meal etc
Other... Heart Failure
Other. Tracheostomy. Lots of operations and trachea reconstruction
Permanent scarring in my aorta, carotid and subclavian arteries. Subclavian ones now about 70/75% blocked. So, high blood pressure that is very difficult to measure but probably hits an upper value of 200, high pulse rate, dizziness etc.
it has affected my ability to produce dopamine which causes parkinsonism symptoms.
I find this topic too difficult to answer responsibly. I do have permanent nerve damage, hearing loss, some heart and kidney problems....but cannot say whether these were unavoidable or due to late diagnosis?
I've ticked Kidney Damage and Other. The kidney damage possibly would have built up eventually, but the major flare up I had that eventually got me diagnosed caused a lot of damage in a short space of time. It also caused some minor scarring to my lungs, and I'm now constantly tired.
Although fatigue is a known symptom of Wegener's, I was never this bad before the major flare up, so I can't help thinking that the late diagnosis either caused it, or really helped it along.
My HUVS caused a heart attack and left me with heart failure and reduced heart function.
Myocarditis. Damage caused by vasculitis to left ventricle heart wall muscle.
Myocarditis. damage caused by vasculitis to left ventricle heart wall muscle. Confirmed last week!
Mono neuropathy multiplex
Yes, I had mysterious symptoms and increasing weakness, fever, nausea, cough for two and half months with doctors baffled. After admitting myself to ER, I was in kidney failure and severely anemic in September 2012. Finally diagnosed with ANCA positive MPA. I am in remission but left with 15% kidney function and on transplant list. Prior to vascuitis diagnosis, I was in excellent health.
Yes, I lost some of my eyesight and my some of my hair fell out. I have months of awful headaches in my temples, heart pain, leg pain and an emotional breakdown I could have done without. Why do GPs not know how to take a history, ask questions to assist them to make a diagnosis, listen to the patient, examine the patient and arrante appropriate tests? If they had done this, I might not have been through many months of hell knowing I had Giant Cell Arteritis!
