Wagners Syndrome
Has anyone ever heard of Wagners Syndrome, I'm being tested for this at the moment andI really don't know what this is, I think it's some sort of autoimmune desease, would really appreciate anyones views on this.
Sharock.
Answers:
Hiya
i treat people with this condition and yes you are right it is autoimmune.It causes widespread vasculitis in the body.
What are your symptoms just now ? age etc.
Ive treated a lot of people who have gone undetected for some time and then unfortunatly become so ill they then need plasma exchange therapy , the idea behind this is to remove the harmfull autoantibodies in the plasma that flood the system making you so ill your body finds it difficult to cope with and replace with new plasma which in turn helps to boost your own immune system, this of course is in extreme cases but works very well.
if detected early the treatment involves steroid / cytotoxic therapy .
What have you had done to detect this so far ?
Usually a biopsy of an affected organ ie lung , kidney or xray of your lungs and a serological test for a specific antibody called ANCA are diagnostic of wegners granulomatosis.
Answers:
Hi,
I've just had bloodtest done, so got to wait for the results, on reading what you've written about the lungs and kidneys it dosen't sound like what I'm suffering from,
I'm 42, at the beginning of the yearI developed ectopic heartbeats, on top of this I suffered 2 really bad sinus infections which antibiotics failed to clear, I'm now having trouble with deafness in one ear, sinus probs continue and also the tip of my nose both inside and out is stinging 24 hrs a day and the soft tissue is basically dissappearing and I'm being left with just the cartilige showing under the skin,the skin on my nose is white, Ialso suffer with some difficulty to swallow at times and breathlessness,I have pins and needles in my lips,roof of my mouth and tounge,my nose and eyelids are stinging all the time,I have no energy and am now suffering with depression.
It woulld have have been a relief to talk to someone who might know what it is I'm suffering from, but I don't think it is Wagners Syndrome now.
Thank you anyway, I would still appreciate your views if you have heard of anything like this before, butit dosen't sound like Wagners Syndrome does it?
Sharock.
Answers:
Hiya
wegners is quite a rare condition and manifests itself early on somewhat like a viral infection, aching joints , sinus problems , flu like illness not all gps would even think of this at this stage and it can go on for some time not responding to antibiotic therapy etc. Its when it goes undetected that problems arise from the vasculitis as this can affect all or some of the organs.
Its good your gp has tested you for this and he may have had some past expereince with another of his patients as very few have , at this stage its easily treated so thats good and its good to rule it out now .
A lot of autoimmune diseases start of like this and it does sound like you may havesome sort of autoimmune condition , the blood test can take a few days to get a result from and it will be looked at by an immunologist.
Try not to worry too much , easier said than done i know and im sure you are not feeling to well from what you are saying but untill you get a diagnosis it can be a bit of a waiting game .
Keep me posted on how you get on and if you would rather i pm you then no problem or vice versa of course .
hugs lynn xx
Answers:
Hi -
Spelt Wegner's Granulomatosis - a specfic type of Systemic Lupus - an autoimmune disease effecting various parts of the body - hence being a syndrome.
Lupus may effect any organ / multiple organs in the body - different in everybody. Wegners often effects the kidneys as goldilocks has said.
Mild disease often requires no treatment.
Moderate disease may be controlled on immuno-suppressant medication - steroids, azathioprine or cyclosphosphamide tablets.
Severe disease requiring plasma exchange to remove immunoglobulins which normally fightinfection - but here fighthealthy organs.
As far as complementary therapy is concerned I have not heard of any specifically useful. I would suggest that all disease is as a result of emotional issues which manifest as physical symptoms.
Emotional journey work may be helpful (See Brandon Bays - The Journey)
Also use of Essentail oils - notably Juniper - may h
Answers:
Thank you both for the information, am still waiting for tests results, hopefully it wont take to much longer. Will let you know when I do, once again thank you I really do appreciate it.
I think it's the not knowing what it is that dosen't help, I'm sure once I know what's going on I might start to feel better (depression) because then at least whatever it is I will start getting the right treatment for it.
Sharock.
Answers:
Have Pm'd you Goldilocks.
Sharock.
Sharock.
Answers:
Hiya
i treat people with this condition and yes you are right it is autoimmune.It causes widespread vasculitis in the body.
What are your symptoms just now ? age etc.
Ive treated a lot of people who have gone undetected for some time and then unfortunatly become so ill they then need plasma exchange therapy , the idea behind this is to remove the harmfull autoantibodies in the plasma that flood the system making you so ill your body finds it difficult to cope with and replace with new plasma which in turn helps to boost your own immune system, this of course is in extreme cases but works very well.
if detected early the treatment involves steroid / cytotoxic therapy .
What have you had done to detect this so far ?
Usually a biopsy of an affected organ ie lung , kidney or xray of your lungs and a serological test for a specific antibody called ANCA are diagnostic of wegners granulomatosis.
Answers:
Hi,
I've just had bloodtest done, so got to wait for the results, on reading what you've written about the lungs and kidneys it dosen't sound like what I'm suffering from,
I'm 42, at the beginning of the yearI developed ectopic heartbeats, on top of this I suffered 2 really bad sinus infections which antibiotics failed to clear, I'm now having trouble with deafness in one ear, sinus probs continue and also the tip of my nose both inside and out is stinging 24 hrs a day and the soft tissue is basically dissappearing and I'm being left with just the cartilige showing under the skin,the skin on my nose is white, Ialso suffer with some difficulty to swallow at times and breathlessness,I have pins and needles in my lips,roof of my mouth and tounge,my nose and eyelids are stinging all the time,I have no energy and am now suffering with depression.
It woulld have have been a relief to talk to someone who might know what it is I'm suffering from, but I don't think it is Wagners Syndrome now.
Thank you anyway, I would still appreciate your views if you have heard of anything like this before, butit dosen't sound like Wagners Syndrome does it?
Sharock.
Answers:
Hiya
wegners is quite a rare condition and manifests itself early on somewhat like a viral infection, aching joints , sinus problems , flu like illness not all gps would even think of this at this stage and it can go on for some time not responding to antibiotic therapy etc. Its when it goes undetected that problems arise from the vasculitis as this can affect all or some of the organs.
Its good your gp has tested you for this and he may have had some past expereince with another of his patients as very few have , at this stage its easily treated so thats good and its good to rule it out now .
A lot of autoimmune diseases start of like this and it does sound like you may havesome sort of autoimmune condition , the blood test can take a few days to get a result from and it will be looked at by an immunologist.
Try not to worry too much , easier said than done i know and im sure you are not feeling to well from what you are saying but untill you get a diagnosis it can be a bit of a waiting game .
Keep me posted on how you get on and if you would rather i pm you then no problem or vice versa of course .
hugs lynn xx
Answers:
Hi -
Spelt Wegner's Granulomatosis - a specfic type of Systemic Lupus - an autoimmune disease effecting various parts of the body - hence being a syndrome.
Lupus may effect any organ / multiple organs in the body - different in everybody. Wegners often effects the kidneys as goldilocks has said.
Mild disease often requires no treatment.
Moderate disease may be controlled on immuno-suppressant medication - steroids, azathioprine or cyclosphosphamide tablets.
Severe disease requiring plasma exchange to remove immunoglobulins which normally fightinfection - but here fighthealthy organs.
As far as complementary therapy is concerned I have not heard of any specifically useful. I would suggest that all disease is as a result of emotional issues which manifest as physical symptoms.
Emotional journey work may be helpful (See Brandon Bays - The Journey)
Also use of Essentail oils - notably Juniper - may h
Answers:
Thank you both for the information, am still waiting for tests results, hopefully it wont take to much longer. Will let you know when I do, once again thank you I really do appreciate it.
I think it's the not knowing what it is that dosen't help, I'm sure once I know what's going on I might start to feel better (depression) because then at least whatever it is I will start getting the right treatment for it.
Sharock.
Answers:
Have Pm'd you Goldilocks.
Sharock.