Mum just been diagnosed

My mum 3 weeks ago was diagnosed with vasculitis. I have just found this site and I have to say I had never heard of this condition until now and I am surprised how many different symptoms it causes. I now realise that she has had various symptoms for a number of weeks but I was just ignorant. I have learnt so much since reading peoples blogs and looking at the Vascular UK site. I now feel more able to cope when she eventually comes home. The main condition with her is numbness of legs and hands and that she has developed foot drop which is also a symptom and i thought it was old age (sorry mum) She is going to a nursing home today hopefully for approx 4 weeks for rehab to enable her to come home. Her kidney function is also affected and I have yet to establish exactly what that means.

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  • what form of vasculititis as your mom got also u wasn't ignorant I had never heard of it until I was struck down with it last year mine is cryoglobulinanemnia and it is in my kidney

  • Hi Chrissy and welcome to the group. Sorry you've had to find us but glad that you found the website useful.

    Does your Mum have a diagnosis of a specific type of Vasculitis ? As you've found there are many symptoms and different types of Vasculitis can effect different parts of the body. Do you also know what treatment she is having ? Some of the drugs we take can be a bit nasty and it can be good to know what to expect.

    I know we have a number of folk here who also get numbness of their hands and legs, some with foot drop too. Hopefully one of them will spot this and offer some advice shortly.

    Vasculitis often affects the kidneys but it can depend on how early you get a diagnosis and begin treatment as to how much they are impacted.

    Just remember that although there's no cure for the disease, many of us live very normal lives in a good state of remission. Please ask any questions you might have as I'm sure there'll be someone here who has experience or an answer for you.

    All the best for your Mum's continued recovery,

    Richard.

  • Hi Chrissy, sorry to hear about your mum. I have foot drop but from the neurological symptoms I suffered from brain damage from the Cerebral Vasculitis I have which presented with a stroke? However I dont have kidney involvement so I expect it may well be a different form of Vasculitis? Sorry I cant be more help and I am sure someone else will be!

    All the best to your mum

    Sarah x

  • Hi Chrissy, sorry to hear about your Mum, I had never heard of Vasculitis until I was diganosed 4 years ago after mis diagnosis. We are a rare breed I have PMA and my Kidneys are affected, I was on Dialysis for weeks then my kidneys started working again but only at 25% I consider myself lucky. Have they told you yet what kind of Vasculitis your mum has its important theta you find out. Our doctors know little about it so it is down to us to find out all we can so we can help them out. Your mums consultant is your best contact, keep us informed this site is a Gid send and eveyone on it will help as much as they can

    Patsy

  • I got diagnosed with ANCA c positive vasculitis in April. Like yourself I'd never heard of it! I went into hospital thinking I'd be out in a few hours after I self diagnosed myself with lyme disease. Ended up in a coma and transferred to another hospital after contracting MRSA and so was hospitalised for 2 months!

    I've also realised they the Dr don't say much so much of my knowledge is based on Google n here. I confirmed with my consultant that ANCA c is Wegener granutomalosis vasculitis. I can imagine how difficult is....I'm still finding it difficult to even adjust and understand it and it's effects on me. Definitely emotionally and mentally I feel frustrated as I have to depend on people as physically I'm restricted in so many ways. I can't bend n find menial tasks really tiring.

    I can only say that your support is most definitely appreciated and what helped me is knowing that my family were strong for me even if they weren't inside but put on a brave facef for me.

    All the best

  • People don't understand the disease. As a mother of an adult sufferer I have been looking worldwide for information. It is really frustrating when doctors are unfamiliar with it. It took my 34yr old daughter a whole year, and 200 appointments to have it diagnosed. Talk about frustrating. Her Dad and I are supporting her as best as we can. Even the rest of the family have "no clue" and treat it as just a passing faze. I want to shake them. Write to me if you want to. I live in Australia so I will be out of synch with your local time, but I will answer.

  • You are not ignorant Chrissy. Lots of doctors are not well informed about it either. I live in Australia and we don't have a vasculitis foundation in our country at all. Hence I am in touch with the UK. My daughter is 34 and has Systemic Vasculitis which has lots of symptoms. You will learn a lot here and the group are so supportive too. You have probably "stumbled" upon this site like I did.

  • Thanks for all your lovely comments and support. Mum has today been transferred to a nursing home for four weeks rehab to get her fitter and able to cope better at home. A bit of TLC the nursing sister said. She has got ANCA positive with renal, lung and peripheral nerve involvement if that means anything to you knowledgeable folk, I have to say it sounds rather technical. I am off to see her tomorrow so will be letting you know how she is getting on.

  • Good luck to you and your mum. We're all in the same boat, just at different stages of the disease. Make sure any Internet reading is from reputable sites, as some of the info given on some sites can be quite scary. Before going to see the consultant make a list of any questions you have as it's so easy to forget when in there. Also come on here anytime there is always somebody to help and advise.

    Good Luck xxxx

  • Well, latest on Mum is that she is back in hospital with chest infection and suspect pancreitis. Apparently one of her tablets can aggravate the pancreas. Shes off for ultrasound on pancreas and gall bladder first thing tomorrow morning. It never rains but it pours as hubby has got chest infection as well. Are they catching I ask myself???

  • I too just stumbled on this site. For 3 years I had felt terrible and sleeping. All the time. Then gain weight. Finally went to an internist and discovered I had Hashimoto disease (hypothyroid). So got on meds for a year but still felt bad and changed doctors. She sent me to an immune doctor and a lung specialist since I had had 10 sinus infections in 1 year and 8 anti-bodics. The immune specialist diagnosed positive ANCA. My lung doctor said he disagreed and has been doing control blood test for 4 months. My score goes up and down. I live in Germany and they provide a score 1:80. I am still not sure what that means but it goes to 1:40 and back up. I have had chronic sinus problems for 10 years and plops. I just the lung doctor said he disagrees because I do to have symptoms. But I am curious what is foot drop? The joints in my toes are painful at times and the balls of my feet as well. The backs of my knees feel numb in the morning and my arms go numb when I sleep. I really admire you folks and am amazed Chrissy how you are responding to your moms situation. And 02061949 you are amazing to be such a strength to your daughter. The way you support her. Presently all my family is in the USA and my husband works out of town and comes home on the weekends. It is scary when you are alone and have to do all the running around. The lung doctor sent me this morning to get a biopsy from my sinus. However he said he wants to see my ct scans and instead of doing a biopsy maybe sinus surgery would be the solution. But from what I am reading on this site, a biopsy is standard procedure for vasticulitus. Is this correct. Just glad I found this site and am sending good vibes to you all and trying to prepare myself for the news.

  • Latest update on my mum is that her chest infection has cleared up and the pancritis has settled down. She has been waiting for a bed in a rehab home and after two weeks she is off to another one tomorrow which is not before time as she is now on an anti-depressant as she thinks everyone is ignoring her and starving her which i know is not tru as the nurses have been brill with her.

    dskizs, foot drop is when you lift your foot to walk forward the foot drops down from the ankle as in mums case the vasculitis has caused the nerves in her lower legs and feet to not work, also in her wrists and fingers so she is finding it hard to hold things. To be fair her hands are a lot easier now but she has to use splints now to help her walk.

  • hi, my mum is similar to yours in that she was ill for a little while and has the drop foot. I don't think you were ignorant I just think the vasculitis is a clever little demon that masks itself. we were told for 3 weeks that my mum had flu and that's why she had so many aches and pains...her consultant said in the end it was lucky she had a heart attack because of the vasculitis else it would have carried on around her body and killed her. its taking its time to go to sleep but my mum is just taking things slowly and now knows that in future if she has any aches or pains then she must ask for blood tests. I think we are doing the right thing by joining the forum as we can become informed and hopefully as by-standers we will be able to see if our mums have symptoms that could indicate a flare up of the condition. hope your mum recovers well and is home safe and sound soon.

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