Have you any "symptoms" along with your type... - Vasculitis UK
Have you any "symptoms" along with your type of vasculitis that have been or haven't been attributed to it. ( multiple-choice)
Please select all that apply:
Myocarditis; mononeuritis multiplex; migratory acute tenosynovitis
Sorry I should have added joint and muscle aches/pain.
Triple vision and pins and needles in hands and tongue. Also kidney failure. Dr's blamed all on age and pneumonia and refused initial dialysis, after a while and not dying transfered to icu on heamo filter, after still not dying transfered to hospital with dialysis facilities and diagnosed with non specific vasculitus similar to Wegners. Still here three years later with damaged nerves and reduced mobility no thanks to initial failure to provide correct treatment....
I have throat problems - soreness/hoarseness.
Gastric problems - stomach ache/Gut spasms/diarrhoea/flatulence (both ends)
Headaches, visual disturbances, hearing problems, speech difficulties, bladder incontinence (urge and frequency and need to wear pads permanently since early 20s), difficulty controlling arms and legs, memory/cognitive problems, difficulty reading, etc. I have cerebral vasculitis in a very MS-like form, and the brain damage causes numerous problems all over my body.
Burning sensation bladder. Peripheral neuropathy
I have excess swelling of my legs, feet, right up to my waist, no diagnosis. Itching feet, hands and palms, also can be whole body for months, including my head. Pain below bust line to navel, horrible pain, had it for 4 years, no diagnosis.
Tingling, pins and needles in fingertips. Random itchy red spots on legs and feet. Fatigue.
Ulnar nerve, Morton's Nevron (that's French for nerve in foot) Triple Heart Bypass (arteries blocked, no heart prob) Squamous Cell Carcinoma, Sciatica, Embolism on lung, Headache, Burning on top of foot, High blood pressure, High Cholesterol, Blocked tear ducts (there's a long name for that which I can't remember) neuropathy in toes & fingers, that's apart from the Vasculitis symptoms!! Hey ho, ever onward.
I was very interested to read your reply especially about your triple heart transplant. How did the doctor's find the problem? My partner died of an Ischemic Heart Attack while suffering from WG which they had taken years to diagnose. He kept saying he was short of breath but they told his he had asthma which I do not think he did. He was quite young and I am concerned they did not find the blocked arteries: of course, they blame the fact that he smoked and drank but I know Oxford University are looking into Ischemic Heart Attack and WG. I would be interested to hear your thoughts. He suffered many of your symptoms but I think fatigue was the worst for him. I wish you good health for the future. Matswesslen
Hello, I write on behalf of my husband who has the WG and had the bypass. We were living in France at the time, he had been diagnosed with WG in Nov 11 and he complained of shortness of breath and chest pains which they said was Angina. They attempted to give him an Angiogram but when they inserted the camera up from his wrist, he started having pains. They then kept him in Intensive Care for a week after which time he had his op which was Feb 2012. My husband does suffer from chronic fatigue and of course, excess weight from the steroids.
All the best
Hi since getting WG i have developed Type2 Diabetes, Thrombocytopenia and Neurophathy in both my feet.
Interested to see hypermobility listed, there seems to be a relation between auto immune diseases and hypermobility. One specialist I saw recently said to me it was not known why that is but certainly a lot of people with auto immune conditions have it.
asthma, swelling of ankles and mertens neuroma, fatigue and stomach problems due to the medications, difficulty walking long distances due to foot damage
Neuropathy in feet and hands. Pulmonary fibrosis. Other as result of the drugs - glaucoma and osteoporosis.
With fatigue, I suffer severe ear pain and chest discomfort similar to that with the flu. Since achieving remission a few months ago, these maladies are present more days than not.
Heightened symptoms and fatigue at certain points of menstrual cycle.
Carpal tunnel syndrome.
Skin lesions/spots on limbs, breast and trunk.
Occasional (monthly) bowel problems.
Forgetfulness...
High blood pressure
Fluctuating kidney function.
Pins and needles, Cobweb on face sensation, Intense itching from head to toe, Burning sensation in head or eye as if a hot needle has been put in there, muscular spasms/twitches, stiffening of legs making walking painful/difficult to name but a few !!
High blood pressure, which seems to be a standard in Takayasus.
Pins and needles and cramp in both arms and legs,
Over sensitive bladder and regular UTIs.
Indigestion.
Wolf Parkinson White syndrome (funny heart beat). Told at last cardiology appointment that this was probably hereditary, but no one had ever mentioned it before, and it has only shown up in ECGs in the last 2/3 years. It could be that ECGs have become more sensitive, but it could also be something that developed alongside the Takayasus.
Problems with vision no sense of taste or smell only 40%lung capacity wheezing shortness of breath digestive problems recent onset ear problems skin bruises all the time distorted finger joints.Extreme fatigue.Weight gain due to steriods
Also weight gain and red face due to steroids. Otherwise: extreme fatigue; problems with gait; brain fog; cognitive problems and my memory is shot. I also have speech and word finding problems, reading difficulties, bladder incontinence, flatulence, very high blood pressure and occasional feel as if parts of my body have been whipped with stinging nettles. On top of these, depression is starting to rear it's ugly head. These may or may not be attributable to my Cerebral Vasculitis and brain damage caused by it and numerous strokes - nobody seems to know!
Urinary urgency ongoing. Urinary pain passed in a few days
Fatigue and tiredness
i tend to get lots of sore spot or blisters mainly around my mouth and can be very sore
I have had wg for just under 3 years. I suffered acute kidney failure and now limp along with a 20ish percent kidney function. I have swollen legs and ankles on and off and tend to plod along on very flat feet which are often painful too. There are very few shoes I can wear comfortably. I have had pain in my back and hips since release from hospital following diagnosis . My back pain was caused by 3 spinal fractures which occurred whilst on chemo. I have recently been diagnosed with bursitis in my hips, possibly caused by the trauma to my back but high uric acid levels may also be partly responsible (currently being investigated). The extra stone and a half I have gained since being put on steroids isn't helping but I just don't seem to be able to shift it despite being pretty active.
Extreme fatigue, rashes such as livedo and petechia, night sweats, inflammation of eye glands, dry mouth, some difficulty swallowing, brain fog, cognitive difficulties, memory, sensitivity to noise, hair loss, anxiety, depression, facial numbness, spider veins, restless legs. Experiencing these symptoms with head pain a decade after initial onset of cerebral vasculitis which does not appear active on MRI, angiogram. Am not being treated and my doctors seem not to have any ideas about what might be causing these symptoms
Periphial multiplex neuropathy - nerve damage - especially to hand and feet - I can cut or burn my fingertips and I don't feel a thing!
I do have spasmodic "burning" on the soles of my feet, but , more often it is nerve pain "wriggling" like steel worms through my feet! My hands also go into "spasm" at times...if I cut bread for example...all part of neuritis.
I also have kidney damage...but on a stable basis.
I have noticed, more recently, muscle 'weakness', but not 'pain'.
thank you so much for taking part in this poll, the information gained will be invaluable ...
Susan
For what it's worth, I neglected to mention that my formerly curly/wavy hair has gone straight. Ok with me! I think it began before I began treatment.
If you had Cyclophosphamide and lost your hair, this sometimes happens after chemotherapy drugs.
hyperacusis, hyper brisk reflexes, memory/cognitive problems, difficulty reading, hallucinations, myoclonic jerks, brain/limb co-ordination. (CNSV)
Burning/tender palms, soles of feet? I've ticked this because I always have to a lesser or greater degree constant feelings in both hands and feet. However, I'm not sure what is regarded as a burning sensation or how others perceive this feeling. During cold weather my hands, particularly my fingers, become stiff and difficult to manipulate performing quite simple tasks.
I've been getting sinus problems that affect my hearing and give me headaches. My rheumy says it's a matter for my GP, and not related to my Rheumatoid Vasculitis. Also back aches and pains in my spine and hips. Also problems with my eyes which she puts down to my Sjogren's. Maybe it is, but it's got worse since my diagnosis of Vasculitis
I also have, 'odd' aches & pains, 'stiffness' in my fingers (I am 'Positive' for Rheumatoid Arthritis), 'Tummy' problems/troubles (don't we all!). Along with a whole 'host' of minor 'bits & pieces', so not MUCH really!
I am however, and this IS the important bit, still alive!
