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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Does anyone else have a lot of family members coming down with this disease?

Discussion in 'XMRV Testing, Treatment and Transmission' started by Mya Symons, Jul 8, 2010.

  1. Mya Symons

    Mya Symons Mya Symons

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    Wyoming
    Hello. I hope I am posting this question under the right forum/thread. I have a lot of family members being diagnosed with FMS and/or CFS and I am wondering if this is unusual. Keep in mind that some of us now live in different states and we were all diagnosed by different doctors.

    Many years ago my sister-in-law was diagnosed with CFS. I believe she was diagnosed by an infectious disease doctor.

    Next was me--Diagnosed by rhuematologist

    Then my son--Diagnosed by rhuematologist at Children's hospital.

    My husband--Diagnosed by doctor who specialized in FMS

    My sister-in-law--Diagnosed by family physician

    My brother-in-law--Diagnosed by rhuematologist

    Another brother-in-law--Unsure how diagnosed

    These inlaws are all on my husband's side of the family. My daughter has recently been having a problem where bones are coming out of the socket. The other day she was walking and her knee came out of the socket. She rammed it back it and ended up with a fractured knee (tibea? Fibea?) She is going to be seeing a specialist. I am not sure if this could have anything to do with XMRV.

    It is hard for me not to believe that this is a virus causing this disease. One, perhaps, that certain people are genetically suseptible to, and others are not.

    (for several years the people listed spent a lot of time together at family functions (we liked to get together and barbecue)

    As soon as I can, I am going to get myself tested for XMRV

    This is why I became interested in XMRV and this site that provides so much good info. on CFS and XMRV
  2. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    yes

    My nanna (dads mum) has Fibromyalgia

    Me CFS/ME (started about when i was 26yrs) and i had Fibromyalgia for quite a few years when CFS was at worst

    My cousin (dad's brothers child) has same CFS/ME symptoms as me and has been on disability pension since 19 yrs old. She remains undiagnosed as her doctors dont believe in CFS

    My cousin above, her father (dads brother).. has developed a rare autoimmune illness.. systemic mastocytosis, my counsin thinks she's got that but tests negative (i think its somehow related)

    My sister (29 yrs?) she's had CFS symptoms for past year but doesnt know what is wrong with her, she keeps going to doctors.

    In regards to the XMRV connection.. my grandfathers on both sides of the family died of prostate cancer

    .........

    Im the eldest of all my 19 first cousins all on my fathers side where the issue seems to be, 17 of them girls and eldest of my 3 sisters.. so time will tell how many more of us are going to get sick with this in their 20s and 30s or earlier. My two girls arent as energetic as most other children so it wouldnt surprise me if one day they get ill too. As my uncle and cousin live in a different state, i dont even know if they came in contact with me before they got CFS.. maybe they were only in contact with me once when they came over one christmas.

    What is also interesting is that.. a childhood friend who i spend a lot of time with when young.. and still lives in same area as me, she came down with CFS/ME in the same year i think it was as I did (we would of had many same exposures as children, riding and swimming in creeks, a part of her fathers land was used to dump toxic waste).



    I can believe that too.. it seems something contagious but that one also needs to be genetically suspeptible too. i had two strange incidents when i was a child where i found i just suddenly couldnt walk anymore, like my muscle power ran completely out (a mitochrondrial issue???)... so something in my body i think was predisposed to coming down sick later on in my life.
  3. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    I got so carried away with the family stuff that i forgot to answer your other question about your daughter and her dislocated knee and if there is a connection.

    There may be a connection if your daughter has Ehler Danlos Syndrome?? (which can have the complication of dislocations including the knee cap). Ive met a few people who have both Ehler Danlos and CFS and used to be in an Ehler Danlos/CFS/FM support group. So i assume there "may" be a connection between that and CFS or FM.

    If you do some searching you may find out more
  4. taniaaust1

    taniaaust1 Senior Member

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    4,763
    Sth Australia
  5. Mya Symons

    Mya Symons Mya Symons

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    Wyoming
    Thank you for resonding and the info. on Ehlers-Danlos Syndrome. I talked to my daughter and she promised to ask the specialist she is going to see about it.
  6. Tembo

    Tembo Australia

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    So far we have 8 family members who have come down with it :( Its so scarey.
  7. IntuneJune

    IntuneJune Senior Member

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    NorthEastern USA
    Family members

    I only have one sister who is healthy.

    My mother may have had FMS.

    No other family members diagnosed yet, have a husband and three sons (all grown and not living at home).

    June

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