Hi! I'm new to this forum so hoping someone might be able to help me. My mum died 2 years ago from complications relating to MPA (microscopic polyangiitis). She complained for years of numbness in feet and eventually was diagnosed after developing pulmonary fibrosis. For the last 3 years I've been experiencing a number of symptoms which initially manifest as peripheral neuropathy. Other symptoms include: head tightness, tinnitus, dull hearing sensation yet irritability and over sensitivity to many noises, headaches, sinus type pain, chronic back pain. I've seen a neurologist and am currently having tests for B12 deficiency with a haematologist - all test have come back negative. I know the AAVs are rare conditions but as my mum had MPA I wondered if anyone who has GPA (Wegeners) or MPA has experienced similar symptoms to mine.
Thanks - any insights would be much appreciated.
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Rheadster72
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Hi,
Have you discussed your concerns with your GP. I suspect the only way to get a definitive answer is to see a Consultant who specialises in Vasculitis and get it ruled in or out.
Neuro's and Haematologists are usually very specialised and not great at looking at symptoms as a whole.
It's my next port of call. The local rheumatologist lists vasculitis as one of his areas of interest. Just wondered if this condition was worth exploring as a potential cause of my symptoms.
The problem is that there are over 18 different Vasculitis variants. Certainly some of your symptoms would fit but there are a lot of differential diagnoses as well to rule out.
VUK have a helpline if you would like to phone or e mail to discuss things.
Thanks again. I'm based in the North West so only looked into my local Nuffield (Chester). I was tempted to reach out to the consultant who treated my mum as he seemed to have figured hers out when all others had failed to spot it.
Incidentally, I am a medical writer and worked on the launch on rituximab for AAV in the UK so am familiar with the different types of vasculitides.
I've had both PAN and GPA in a space of 30 years and the symptoms are similar, joint pains in feet and hands migrating to larger joints if not diagnosed or treated with steroids, for many years I had sinus, crusting and a friable septum, eventually I had a sinus op and a rhinoplasty.
Untreated the symptoms get worse, loss of appetite, hence weight loss, malaise, night sweats and the joints pains so bad you will be unable to walk.
I hope that helps, obviously everyone will be slightly different
Hi thanks v much for this post - hadn’t ever heard of PAN before, your story rang so true as I have very very similar symptoms over the last 12 years - really resonated. Most posts are all about Kidneys which thankfully isn’t my issue. I have GPA MPO airways not kidneys being my main issue but it cracked into my muscles and joints 2 years ago leaving me on crutches after 8 months - with agony in my shoulders and hips as well as my L knee - as you say builds and spreads without treatment and was super scary, steroids solved it pretty fast.
Hi I have GPA and experienced many of the symptoms you describe before diagnosis. I would definitely try and get a GP referral to a Vasculitis specialist. I believe there's one in Manchester. I'm being seen at Birmingham. Sorry to hear about your mum. Good luck. Hope you get a diagnosis and treatment soon.
Hi. As everyone says, please get it checked out. However, I have an odd story for you. Every female in my family from sister to grand-daughter, mother, aunt, etc. has some form of auto immune. I have EGPA. My older daughter was the only one with symptoms but no diagnoses. Her's were quite similar to yours and last year at 35 yrs old, she found out that she is celiac! She had the tinnitis, irritability, headaches, chronic lower back pain and neuropathic pain in legs.
I live in Chester & was diagnosed with GPA at the local NHS Hospital by ENT/Rheumatology so they definitely have experience of Vasculitis there. There are Vasculitis Clinics at Manchester & Liverpool but you need a diagnosis & referral to get there. I also go to the Vasculitis Clinic at Addenbrookes due to complications.
My Mum had PMR before it was classed as Vasculitis so it is possible to have a genetic connection.
Good luck. If you want any further information re local treatment let me know.
That's really helpful thanks Sue. I'm hoping it isn't these AAVs as I know how brutal some of the treatments can be; but then struggling through the day to day isn't much fun either.
I'm on the waiting list for ENT at the Countess so hopefully that will help rule in or rule out.
Hi Simon I first developed ENT symptoms, loss of hearing,croaky voice,pain in sinuses & teeth. After 3 courses of antibiotics which didn't work, I got an urgent referral to Mr Temple in ENT at Chester. He took a biopsy of a nasal polyp & the diagnosis followed from that. As you have mentioned, the treatment is hard going but it has moved on,for the better, since I was diagnosed in 2004. Rituximab has proved the best for me.
Sounds weird but I was somewhat excited when my mum got her diagnosis for MPA as I had just worked on a training slide deck for medical managers at Roche on rituximab and AAV. Her consultant chose cyclophosphamide over rituximab and although she improved slightly her lungs were already damaged and pneumonia was too much for her lungs to cope with. Rituximab isn't without it's potential problems but it does look pretty effective from the data. Pleased to hear it works for you.
Glad to hear you got a diagnosis and saw a consultant who was clearly switched on.
I, like you, had several of the problems you have and I just sort of ambled on in thinking it was just part of getting older.
It wasn’t until my then fiancé found me fallen and bleeding from my mouth and nose that she called an ambulance and I was initially diagnosed with sepsis but one of the doctors on the ward decided to have the Rheumatology specialist, Dr Linsey, Take a closer look and she arranged for a number of biopsy tests to be done as it was her who asked for the anca blood tests and I was shown to have a high titre (sp) of this. The lower back pain and numbness of various parts of my body plus the bone pain that I thought was due to ageing, and being a bricklayer had caused were in fact down to GPA. The tests and diagnosis took around 20 months before I was diagnosed but I believe I was suffering with it for around 6-7 years.
I was put on a 6 month regimen of cyclophosphamide and then oral form for around another 5-6 months prior to my blood tests being a cause for concern. My red blood cell count was low and also my blood cells had become much smaller. My GP was very honest and told me they were maybe thinking I had developed leukaemia due to the treatment.
I was then in a kindof stasis state while they continued to monitor my blood tests and the medication stopped, all apart from the prednisolone and that was cut back to Just 5mg.
I waited around 18 months prior to being told my blood tests and various biopsies showed GPA but that my red cell count was within the normal range and I was then given infusions of rituximab and I’ve had 5 lots of this in 2 years. I still take the 5mg of steroid and have occasionally got to just stay very close to home as the bone pain makes me unable to do much at all. I’m told the anca is now much lower, I do have a letter with the results but can’t find it right now, I have not had a fever or hospitalisation for around a year now so I am fairly ok with how it’s going but there is always the fear in the back of my mind of it all happening again.
I wish you all the best. I found a couple of others who suffer by using the hashtag Wegeners via twitter and I find some comfort in having this place & my twitter contacts to help me when I get any new symptoms
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