1 in a million. Moyamoya Diease — Scope | Disability forum

1 in a million. Moyamoya Diease

LouRoots8 Member Posts: 31 Connected
It was confirmed I have Moyamoya disease last week almost a year from my first stroke. 18 months from my first neurological symptom. 

Moyamoya is a rare progressive neuro- vascular brain disease. The arteries in the brain close off and to compensate tiny vessels develop. The tiny vessels try and keep blood pumping and get tired. They burst causing bleeds. The closed off arteries causes strokes. It’s a 1 in a million and mostly effects children under 10. 

I had my first stroke at 32 since I have had 3 strokes and brain bleed in 10 months.

 I’ve been wheelchair user for a year. I saw the neurosurgeon for the first time last week and he said my brain isn’t coping due to the lack of blood. he said i am quickly progressing. 

I’ve had a lot of issues caused by the Moyamoya . I have 4-6 TIAs a month, movement disorder, vision loss; paralysis. Memory issue. 

It took 15 neurological teams at 5 centres to get a diagnosis. I was told I was mentally ill. I wasn’t taken seriously. I suffered multiple misdiagnosis. My brain has become more damaged as a result. I’m going through clinical negligence. 

I’ve had to fight social care who was until September refusing to assess under the care act. I had to get a Solictor. 

It’s so rare there is no UK charity. There isn’t even an world wide one. There are a few Facebook groups but they aren’t busy. 

I have an area of my brain that is suffering from a long chronic stroke. Meaning that it’s slowing dying. 

It’s been really hard dealing with the different medical teams and having to advocate for myself. As I haven’t been heard. I have been dealing with this all alone. 

I also have a lot of other health issues. 
Type 1 diabetes, severe asthma, sleep apnea, excessive dynamic airway collapse, adrenal insufficiency, lactate acidosis, chronic infections. I’ve got a problem with most organs. I’m under 21 care teams at 6 hospitals and no one in the nhs communicates. 

The neurosurgeon said the best chance for me to survive is neurosurgery. Although we don’t know if I’m well enough so I have to go in for tests. Even with surgery there is no cure. So in a year it could be back. 

I feel a bit bummed about it. I’ve really struggled to get any support or just taking though. I don’t have much family support and having to think about POA. I have found my peers not that sympathetic. I bet excluded from things and I have found it upsetting. Most my peers can’t cope. 

I feel angry about how I’ve been treated by medics. I’m also proud of myself for not taking it. The doctor who finally diagnosed me I contacted via Twitter and he reviewed me for a second opinion. If I hadn’t fought I’d be left to die. While others told me nothing was wrong. 


  • mikehughescq
    mikehughescq Posts: 8,838 Connected
    edited January 13

    [Removed by moderator – this post breaches our community house rules.]

  • LouRoots8
    LouRoots8 Member Posts: 31 Connected
    So there are different types of Moyamoya. The statics you are referring to are Japan / and those of Asian decent. Where it is more common. 
    In the UK and Europe it is 1 in a million. She yes it it rare. 

    The websites you are referring to aren’t active. One has a Facebook group linked with a very small number of people. The other is outdated/ not updated. 

    What was you hoping to achieve by commenting on this post? Apart from trying to undermine me? Nothing you have said is of support. 

    I love it when someone thinks they know more then my neurosurgeon and team by a 5 second google search. It’s not particularly supportive and extremely arrogant. I would never presume to know more about someone’s condition then they do. 

    I shouldn’t have to justify myself but here

    It is believed only one in every million people suffer from the rare disease, called Moyamoya, that is caused by blocked arteries. Southmead Hospital is the first the UK to offer the surgery - including to one patient from Llanelli.
    https://www.bbc.co.uk › news › uk-...

  • janer1967
    janer1967 Member Posts: 15,019 Disability Gamechanger
    Hi and welcome to the community 

    I'm sorry for all you have been through and well dine for keeping up the fight which must have been difficult 

    Don't feel you have to justify yourself here we are here to support you even though we may not have knowledge of your rare condition I'm sorry there is little information out there 

    Take care 
  • mikehughescq
    mikehughescq Posts: 8,838 Connected
    edited January 13

    [Removed by moderator – this post breaches our community house rules.]

  • LouRoots8
    LouRoots8 Member Posts: 31 Connected
    @mikehughescq I’d rather you not comment on my posts further. 

    Firstly you tell me the information about the disease I have is incorrect. You then tell me my consultant is wrong. 
    Then your accusing me of playing top trumps which is ridiculous. 

    You are incredibly unkind and unsupportive. What support do you feel you are bringing to this conversation? 

    I am not quite sure what your issue is. Apart from trolling. 

    I was relaying the information my consultant told me. But apparently you know more then him. 

    Like many people with rare diseases and disorders I have struggled to get a diagnosis and treatment plan. Something others here most likely relate to. I have also had to deal with a lot of ignorance and ill information. 

    I was reaching out not to play any trumps but to try and connect with other who may be in similar situations. Not to be told I’m wrong. Or my care team is wrong. Or give me information to site that while are still live aren’t active just to try and prove me wrong. 

    I thought the point of this space was to share experiences, maybe find others in similar situations. Not to undermine others, presume to know more than those with complex health needs. 

    I don’t know what you hoped to achieve with your communication.
    Although this doesn’t feel a very supportive place. 

  • Ross_Scope
    Ross_Scope Posts: 6,623

    Scope community team

    Hello @LouRoots8

    Welcome to the community, thank you for joining us and for introducing yourself. You clearly have been through a lot, so I appreciate you taking the time to tell us about yourself and your story.

    I'm sorry that you haven't found the community to be a supportive place so far, but I hope to see you around here more often and I'm sure your opinion of it will improve. The community is full of supportive and welcoming members, and your contributions are very much valued. 

    It doesn't seem as though you've received all the support you need, which I'm sorry to hear. You mentioned your conditions in your post and it appears to be a lot to handle, so it's of course very important that you get all the help you deserve. It's also unfortunate that you haven't been able to find any support networks of people who have the same condition as you, because getting that peer support can be so vital. Hopefully you have found some use in the Facebook groups though.

    In your opening post, you also said:

    "I’ve had to fight social care who was until September refusing to assess under the care act. I had to get a Solictor. "

    What is the situation with this now? Were you eventually able to receive an assessment? Do you have any care in place?

    Please feel free to have a look around the community and get involved wherever you would like to, and if you have any questions then don't hesitate to ask.
    Online Community Coordinator

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Did you receive a helpful reply to your discussion? Fill out our feedback form and let us know about it.
  • LouRoots8
    LouRoots8 Member Posts: 31 Connected
    Thanks @Ross_Scope

    Social care and the care act is all still not sorted. It’s all rather stressful. 

    I’ll update more when I feel up to it 
  • Ross_Scope
    Ross_Scope Posts: 6,623

    Scope community team

    Sorry to hear that @LouRoots8, hopefully it can get sorted soon. Please feel free to update us whenever is most convenient for you, I hope things improve.

    Online Community Coordinator

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Did you receive a helpful reply to your discussion? Fill out our feedback form and let us know about it.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,263 Disability Gamechanger
    Hi @LouRoots8 - good to see you on the forum again. I remembered that I'd seen Moyamoya mentioned before in the community, & then realised that you & I had texted about your many health issues, where you mentioned Moyamoya syndrome, which you kindly explained to me, last July.
    I'm sorry to read that now Moyamoya disease is confirmed, & that altho I'm sure getting a diagnosis is welcome, that it's been a battle to get there, especially on your own. To a lesser extent I've been there, & also had to advocate for myself, & family.
    I hope your neurosurgeon is able to help, & you get further support put into place. Thank you for saying you will update us when you can.
  • LouRoots8
    LouRoots8 Member Posts: 31 Connected

    In September I had the angiogram that confirmed Moyamoya. Then there was lots of faffing from different teams who didn’t know what to do. 

    The situation is largely the same. I’ve not got anywhere with social services. Still awaiting a CHC. The legal process is ridiculous slow. 

    I had another stroke in December and I’ve been very poorly the last 6 weeks. I’ve had a lot of mini strokes. This week has been particularly bad although I’m feel a little stronger today. 

    Stress doesn’t help a brain with limited blood flow. 

    One of my nurses is trying to get respite for me, does anyone know of any? I’ve looked a revitalise? Most of them are shut due to pandemic.  I need care but I don’t want to go into a care home. 

    I’m finding dealing with HCP very stressful. 
  • Libby_Alumni
    Libby_Alumni Scope alumni Posts: 1,254 Pioneering
    edited January 13
    Hi @LouRoots8

    I'm so sorry to hear about what you've experienced recently, I can imagine it's been a stressful time for you. Do you have much support from family and friends at the moment?

    I've just had a look online at certain respite resources and this link from the NHS should be useful:
    If you scroll down to the section titled ' Respite Holidays Arranging it' - it lists a few companies that offer respite care/services. I hope that helps and please let us know if you have any other queries or concerns. 

    Online Community Information Coordinator

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Did we do a good job at answering your queries or concerns? If so, complete our feedback form now. 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,263 Disability Gamechanger
    Hi @LouRoots8 - stress doesn't help anybody does it?; I know it worsens my chronic pain. As far as respite goes, there's also a little more info here: http://www.disabilityholidaysguide.com/advanced-search.aspx?Country=All&Service=52&Refine=All    I don't know if Nurse Plus or Able Community Care would be appropriate, but you could also search the various categories on this website: https://www.ableize.com/  for example the 'Care' one. I hope you find something.

  • LouRoots8
    LouRoots8 Member Posts: 31 Connected
    Hey guys. 

    Thought I’d say hello. 

    Things are very difficult. 

    Still no news on CHC assessment  

    Social care are just being awful. Out of spoons to explain. 

    I do have a new carer although my needs are progressing quickly and I’m in need of more care. I need overnight care I’m Inn1 bed flat that isn’t adaptable to my needs. I’m on an urgent transfer register but nothing suitable is coming available. 

    I am going to search the community for any information on the HOLD scheme. Although I don’t think I’d get a mortgage. Has anyone had direct experience with this scheme? 

    My carer is great. It’s a pA and we hit it off straight away. Although there is lots of learning for her. 

    The community matrons are now aware of me and we’re utterly shocked at the situation. I’m baffled why I hadn’t been referred to this service years ago. They are arranging MDT meetings this week with different services. Hopefully things will improve. 

    My respiratory issues aren’t great. I’m needing different type of ventilation. My scans show lots of inflammation they think from my severe asthma. Which is complicated matters.  

    I’m just exhausted with battling for basic care. It shouldn’t have ever hit to the level this is out. I’ve always had complex health needs and that haven’t been addressed or even acknowledge. I’m in a crisis situation where my body is rapidly failing me. 

    I’m tired of reactive care. 

    I feel slowly things are improving with services. This will eventually reach CHC. I can’t see how my needs won’t meet CHC criteria. I hope once my needs are acknowledged things will improve. As I’ll be able to get a PHB to get my needs met.