Recently Diagnosed with CNS Vasculitis

[NataliePhillips123]

Hello, Im new to this group and have recently been diagnosed in the last year with various forms of vasculitis, CNS and systemic, I am just learning to accept this and finding it very hard for the whole family if anyone has any advice that would be great especially for my little ones who are 8 & 10 and my 10year old is struggling with this as they both saw and helped me when I was constantly having seizures this summer.

[Main1234]

Hi, wondering if you are able to get more support and advice/information from the Facebook page. I know there is a book that someone had written ( who has vasculitis) especially for children to explain the disease.. you may find this helpful.

The vasculitis web site is also invaluable for information etc.

My OH has GPA. I wish you and your family well.

[Galaxy2]

Hi Natalie

Welcome to the group. I am not sure I can offer advice as such but I can relate a little, my daughter was 5 or 6 when I was first ill and it is really hard on them at a young age to both understand and accept life has changed from what they knew it as.

My vasculitis is neurological too but I can honestly say from my diagnosis over 10 years ago that my health is so much better now than I imagined it would be. I do remember fearing so much for what the future held when I was first diagnosed but I have a wonderful medical team and with the right treatment and care life can really improve.

I do hope you have got a good neurologist and treatment that is helping your symptoms. I know it is such a shock to become ill at a young age and so much to take in.

Do take care of yourself

Jenny

[541965]

Hello Natalie - I too have CNS Vasculitis since Feb 2018. Drs are not sure how I contracted it. Think it was a strong infection which triggered a major immune system overreaction which went on to attack the left side of my central nervous system. Since then. I've had good rehabilitation neuro physiotherapy(3 months)Then less consistentsessions. I've had acupuncture,continual massage to remind & wake up the nerves. In the new year I'm about to have hydrotherapy. anything from the nhs will be a varied waiting list...

What's helped me is friends who are positive & listen, having a strong visualisation about being able to manage your issues.

Reminding myself of what I acheived in the postdiagnosis months helped the neuro pathways.

If you've have a good Occupational Therapist that too can help discussing the everyday challenges too. Ask & enquire as to what services can help. You might not suit all but experiencing may help.

My daughter was 13 when it happened & somehow managed to deal with it but being older was a plus. It'll be for the father & other close relatives & friends to let your children see that you are loved supported & enabled to do what you're able to manage, which will send them a strong message of progress. This forum is great & over the years it's been very useful & helpful.

Take care & remember you are NOT alone!

[NataliePhillips123 in reply to 541965]

Thanks so much for your positivity - I guess I just feel angry at the world! and scared when an attack may or may not happen again - but I always put a smile on my face - I always get up every morning and I've dealt with illnesses for 10 years so this must be the missing piece - just very hard for my 10year old.Take care and thanks for you advice x

[Hidden]

Hi I have the remnants of cerebral vasculitis everyone is different but my tool kit that helped me is : learning reiki practicing self healing every day ,learning to meditate properly ,walking , turmeric ,broccoli sprouts, the game changer was buying and using an earthing mat ,letting go of all frustration and anger . Keeping working even when it was extremely difficult nothing like distracting the brain from pain . I hope you get better and enjoy your family . My son was 13 when I was first diagnosed he is 30 now he watched me really suffer at the beginning but watched me slowly turn things around . Never give up self love is vital . I read books by Dr Joe Dispenza , Donna Eden ,Bruce Lipton ,Dr David Hamilton and keep an open mind . I love science and modern drugs saved my life but I like to combine it all to find my route . I have worked 2 jobs one which I get paid for but the other is a voluntary job for a local nhs hospice .every hospice in this country use reiki as it’s amazing what it can do for you and patients. I have seen what it has done for myself and patients over time . My best advice is learn it yourself and for people that don’t believe any of this before you make a judgement try it for yourself before you dismiss it out of hand you might just find something wonderful. I’m not saying it’s an instant fix but with determination and practise it’s life changing xxx

[NataliePhillips123]

Thank you I am actually a reflexologist so a big believer in reiki and healing and alternative medicine but I'm too scared to mess with it all right now! The anger and frustration is making it all worse - especially today was horrific even tho I can see from scans its improving today was like I had Alzheimers it was awful and my 10year old found it particularly hard and was angry with me. I was taking turmeric capsules etc but you can't with anti seizure medication and I am trying to stay off sugar(but having trouble ha ha) - I need to learn to meditate, along with self love for this new me. I am walking every day but then sleep about 2-3 hours after and I just can't accept it right now but your message has put a smile on my face thank you so much xxx

[Lceder in reply to NataliePhillips123]

What type of seizure medicine do you take? I’ve been on Keppra since 2010. I had a grand maul seizure first. Then the ischemic strokes started. My girls were younger around 9 & 12. It was very scary for them. They are now both in college and happy. Just stay positive and let them see you trying your best!

[Hidden]

I hope you are ok sending hugs 🤗 dr Joe dispenzas meditation the healing of the energy centres is very good take care x message me anytime I can send reiki to you anytime xxx

[John_Mills Volunteer]

There is a book available for children to help understand via the VUK website. You can read about the author, Jen and her family, in the Winter VUK newsletter page 17 vasculitis.org.uk/wp-conten...

vasculitis.org.uk/shop The book is called Holly Helps Out.

[NataliePhillips123]

Thank you