Ive noticed over the last few months that my mum has changed in some ways. Back in January she was full of life, happy & had loads of energy.. I envied her for that.. she complained of feeling not herself & I joked around saying she'd been around me too long & I was rubbing off on her, but I could see in her face that she really wasn't right. 10 years ago she suffered 4 slipped dics & had a major back operation, she then had 9 gallstones & removal of gallbladder, & pancreatitis.
She'd been unsteady on her feet, falling to one side & loosing her balance. She began taking small naps in the afternoon, & it gradually became a frequent all day nap. Her memory seemed to be off key, she began repeating herself over & over, & forget it as soon as she said it & look blankly at me & at times she couldn't get her words out properly & got very frustrated & then completely forget what she was saying, & id sit her down & make her a cuppa. My mum loves her garden & pottering around, she never sits still. She's 62 next week but she looks 40. She's absolutely beautiful!1 year ago we had a birds nest in our Porch, the builders were extending the house & they needed to pull all the lights down, which were tangled in the nest, mum got up on a wooded step ladder, & she fell, 4ft on too the cornerstone- rushed her to hospital via ambulance . Winded herself on impact, head cut, she had fell straight down on the concrete flesh wounds from the stone from the middle of her spine & went all the way down to her buttocks. her knee broke her rib & her rib punctured her lung She had internal bruising, & some bleeding. She's still not right. & 2 nights ago I was called home around 4am I was in bed, mum was not well, she couldn't stand. Her hands were ice cold. She was wheezing. Extremely pale. My brother wasn't sure as she changed quite quickly. She takes 100mg amitriptaline at night. Recently seen a private Neurologist who prescribed mum with Pregabalin through the day & morphine for her recent back pain.
I found her bent over screaming in pain, I gently picked her up & sat her on the sofa. Went to the kitchen to get her some water & I heard a thud, ran back in & she'd tried to get up & fell backwards & hit her head on the cornering of the wall. She was very dopy & seemed quite out of it, I checked her pills. Tramadol 4 tablets she forgot and took an extra one. Mixed with the amitriptaline. & oral morph. I had to wake my dad as I was so ill myself & I couldn't pick mum up, he helped me to get her up to bed, and I was exhausted & couldn't walk home so I slept upright on the armchair..
next day I woke up to find my mum in bed mouth wide open pale & shallow breathing but a very high pitched wheeze sound was coming from her,
She woke up suddenly & shouted at me, but I was more than happy for that as I thought the worst. That was the worst night so far, but last night I was struggling myself, days are very long & painful for me, as they are for mum too. I feel burnt out.. the nights I can't sleep because my pain is immense & then I'm called to my parents to care for my mum who is also in pain.. last night mum fell over in the kitchen, hit the side of her face on the concrete tiled floor.
I was 4 steps away from her grabbing her a jumper from the coat rack as she was really cold, I couldn't grab her in time. I rushed to the floor in panic, rang my dad who was asleep bless him. He came down the stairs & sat with her. We didn't want to lift her up to quickly just let her get her breath back, it's so upsetting. Dad picked her up & I stayed on the floor. I stayed there for almost an hour. I couldn't move, mum was led on the sofa & dad too. I called an ambulance went through the details..& within 3 mins or so she was up in the kitchen making a cup of tea. I still had no life in my legs to get up & take her back to the front room, I knew I needed to get up, but the odd feeling in my legs came back, heavy, & one of my legs looked blue... god knows how I made it up the work surface but I did.. mum was shaking, her fingertips had blanched white marks on them, but she looked ok & with that she fell again. This time I went down with her. She hit her back & the bruising has come out today. Quite bad. She saw the doctor tonight at 5.30. He said the recent blood tests he ordered for mum 1 came back Positive, he couldn't give her a name or description but did confirm an Auto immune Disease! My mum too will be having her first Rheumatology appointment on Monday morning. So I have been told I have an auto immune disease. I know GPA & im still awaiting biopsies & tests, her doctor didn't mention vasculitis, as it isn't hereditary but can my mum & me have a link in our diseases...? X
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LauraMk30
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It seems to me your mum having been so active and independent is finding it difficult coming to terms with dealing with her injuries and as yet is finding it hard to move about carefully maybe with the help of aids in order to avoid falls
The fact she looks young for 62 will probably make it even more difficult to reconcile using mobility aids. more commonly associated with people in 70s and. 80s
This also is putting a big strain on you
All autoimmune diseases do not respond well to stress yet life can be stressful
It's is good your Doctor has indicated he thinks autoimmune diseases may be the cause
There is a lot of help and information about these poorly understood and rare diseases but it's improving all the time
Although not thought hereditary there does seem to be a genetic predisposition towards autoimmune diseases but much more research is needed
Good Luck and try to reduce stress in your lives if possible and accept all the help you can get
Yes it's been a rollercoaster, she's trying so hard to get back to the person she was last year, but I'd struggling to come to terms that she's not a spring chicken anymore bless her heart. I mentioned the use of a stick as I use one around the house now. But she's too proud, & embarrassed to be seen with one. But it's not about other people it's about her.
Yes your right, but I think If I take my cane out she might feel a little more at ease.
The strain on me has been immense. And I Am struggling, it feels as if I want to wave a white flag & surrender.
I think it's rather odd that my mum has gone down hill quickly as I did. She was ok ish before the Pregabalin tablets were doubled.
She was looking after me as i was bed bound, the roles have reversed now. Stress is a major part of our lives, I've tried to reduce it, but everyone seems to depend on me, I think it's because the first time I had this I got on with it and it went away but this time it's taking me down.. it's all so new.
We never used to expect help but I think it's time we did. Because I can't do it alone. Monday will be good for mum, & I hope she can get some answers.
Thank you June your comment is most appreciated. X
Aww thanks June. My mum is my best friend. Think when illness takes over it puts a strain on the bond, as we both have the same temperament when we're in pain.. haha. ( Groggy girls.)
Jeez I'm sorry to hear that! You have been through hell, but your here to tell the tale. Strong at heart.
& yes your ever so right.. aids or not life with illness is still worth living. She appreciates life more now, I've always been eternally grateful for each day, I feel blessed to have mum, were each other's crutch.
I don't think my mum could bare the thought of me living abroad.. but I hope you get to see them still. & that you have a lot of support around you. I moved out of my parents to move literally around the corner. I feel better now that even tho I'm poorly & in emergencies I can call on them. 4 min drive away.
I think we both want to go back to the best versions of one another, but we have to expect that we are now different to who we once were. But we can become stronger together, it's gunna be a long journey but I know we can do it.
I love that ! That gift is priceless, we have a unconditional love for one another. She's my angel.
Hi your story sounds awful and I hope things get better for you soon. GPA isn't hereditary as such but there are (as described to me by a hospital doctor) family clusters of sufferers of the disease. This is because possession of a certain group of genes makes us susceptible to contracting it. My mother and maternal uncle (mum's brother) had GPA many years ago and I now have it. Good luck with the tests and treatment.
Thank you for your reply, I'm sure they will as it can't go on forever that's what I keep telling myself anyway. Oh I didn't realise. I think I thought that because my mum didn't have the same symptoms. But then it could possibly be another form. How are you coping with GPA & treatment ? & thank you for the good luck with mine x
Hi again. I am just over 4 years in to my GPA so have had quite a long time to get used to it. It really got hold of me before diagnosis and I was hospitalised for a month. I have significant kidney impairment now which complicates matters but thankfully avoided ENT and lung involvement. I had 6 months chemo followed by prednisolone and azapriothine plus a lot of supporting drugs eg antibiotics, blood pressure and water tablets. I am down to 3mg prednisolone per day but reducing it has been painfully slow as GPA starts taking a hold again if I reduce any quicker than half a mg every 6 months or so! I am still on 12 tablets per day. It has taken me a long time to recover my strength physically but I am doing OK now albeit with persistent hip pain which the rheumatologist still has to find an answer to. I lead a reasonably normal life - I am retired which helps but I help out a lot with grandchildren and holiday whenever possible (sensible locations only). I try to keep away from people with viruses but inevitably the grandchildren pass them on to me and I can feel very wiped out for a few days whilst I fight it.I have a flu jab every year and also had a jab against pneumonia. Overall I am very pleased to be alive and reasonably well and thankful that medicine has moved on enormously since my Mum and uncle had GPA in the 1970s and 80s.
Try to be patient during treatment and recovery and (I know this is difficult for you) don't overdo things or you may set yourself back. Seek and accept any help you can get.
Dear Laura. I am so sorry to hear about your mum, she sounds a beautiful woman, you describe her so vividly. ..It is a terrible time you are having, my heart goes out to you ❤ xxx
When a family member is ill and especially when it continues, maybe when things are unexplained and it is a battle to get any help, support or treatment as it has been for you.,this is an upsetting time, and a stressful time for the whole family - I can totally relate to this having been in a similar situation with my son-. We all cope differently, and some not as well as others...Any health condition is aggravated by stress, and stress can activate a health condition.. ..
The positives are that the Doctors have recognised that your mum is suffering with some kind of auto immune disorder, and they will arrange all necessary blood tests which will hopefully give answers..
It is always possible that there is a hereditable disorder -as you know, it has been discovered I have one, after 50+ years!..and my lovely mum has suffered with various things, and gone undiagnosed all her life- I am sure your own health issues will be raised while your mum is being seen. It is also likely that there is no hereditary disease in your family, and you and your mum can have unrelated conditions. ..
The main thing now is that both you and your mum get the right treatment and best support and care available. I sincerely wish you and your mum the very best of everything.💟
Let me know how everything goes,Keep Intouch by pm. Love Tilly xxx
ps ..Its important you take the advice about getting and accepting help,. Xx
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She had internal bruising, & some bleeding. She's still not right. & 2 nights ago I was called home around 4am I was in bed, mum was not well, she couldn't stand. Her hands were ice cold. She was wheezing. Extremely pale. My brother wasn't sure as she changed quite quickly. She takes 100mg amitriptaline at night. Recently seen a private Neurologist who prescribed mum with Pregabalin through the day & morphine for her recent back pain. 
We have had further results back today. Can anyone give me some understanding of them. 
Can you tell me your experiences of small/medium cell vasculitis?please
Doctor says egpa does not affect your brain
Bronchocentric Glanulomatosis?
