Rheumatology appointment .I am going to be Famous !

(A long one coffee ready?)

I went to my appointment yesterday follow up from my last appointment a few months ago when the consultant told me that I had

oesteonecrosis in a lot of my bones, including my spine, it was caused by having Hughes syndrome for years! without anticoagulation therapy.Not suprising that I hate my Neurologist is it. He could have diagnosed me years ago ,anyway.

Because I was on Clexane for a couple of years it was decided by the Haematology that I should have a Dexa scan this showed I had dense bones rather than the oesteoporosis that they expected.

I had a bone biopsy and the surgeon local hospital said I had the toughest bones he had ever seen.

It was sent to somewhere in London for examination which is where it was discovered that I had oesteonecrosis.

The Rheumatologist was quite interested in my unusal problem he wanted to write a Reasearch paper on me. I had to give my permission. No name was used.

This was done and in the Next couple of weeks he is going to a seminar on it, In Berlin Germany.I have asked him to send me the paper

I can't remember who was going to attend, but he is known for his research.

I think after this he owes me a favour perhaps I could ask him to give the same speech to very large group of Neurologists.

Not sure if there is any treatment got to have blood tests 24hr urine collection ( hope I don't do more than the container full)

MRI to see if their is any change.

Then back to him for the results.I have told him that I am willing to have my body used for research ,once I am dead of course,

He just said I think we all should looking at my Husband, who was looking a little fed up because we had to wait a while before my appointment.

Pehaps one day you might see me on the Telly, wish I was brave enough.

Love Karen xx

13 Replies

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  • Wow Karen all very exciting stuff... i had a research paper done on me in 1990 still carry it around it really helps actually as got all the stuff like blood results etc that are way gone as hosp notes get destroyed after 10yrs

    do you suffer with pain with this?

    love kathy xx

  • Pain, luckly, no not much the pain I get is in my back but as long as I am careful

    when lifting things as its the area under my bra strap that hurts the most. My Husband carries the washing basket out side and the heavy shopping,pushing shop doors open hurts as well.as does looking at the clothes in a shop as they are so packed together.

    No longer working because of muddled brain, so that helps.

    Lower back hurts when I sleep in a different bed or forget and pick up my 16month geogeous granson

    Luckly it gets better at rest. if I don't let get it too bad ist . So many people get pain on here don't they, must be awful to have it everyday.

    I never got migraine either, must be one of the odd ones.

    Karen xx

  • Fame at last Karen! Do let us know what the paper is called and when it's published.

    Very brave of you to broach leaving your body afterwards, but surprisingly a lot of people are quite keen to do this. I heard of one very unfortunate case where the deceased's will said they wanted to leave their body to "medical science" and they couldn't take it because it wasn't the exact wording which has to be "anatomical science". A real shame as his last wishes weren't carried out and he had to be cremated. You really couldn't make it up!

    I hope the oesteonecrosis doesn't get you down too much. Bone association with APS is becoming more widely recognised - it's a shame for you to be at the forefront though.

    Kx

  • Kate....just curious as to what bone associations there seem to be with APS. My physicians have all of these pieces of my puzzle...I have fit them together myself and believe for the most part it is APS related. They arent as keen to this as I am and seem to want thier own area of specialty be the entire diagnosis.

    I have spinal stenosis and degenerative problems of a 70 year old and I am 48 years old. Oddly I just found this out this past month...always chalked the pain up to working too hard.

    Thanks for any insight on this! And Kate, thank you for your email response to my questions several weeks ago.

    I ended up in the hospital and now am home, unable to walk well so I have alot of computer time on my hands. Thanks again,

    Beverley

  • Hi hon

    sorry to hear the rough time you havin but glad they will be looking in depth and maybe help you feel better. Plus may help others.

    A famous lady in our midst, good one hon.

    Hope you have a well day today.

    Take care gentle hugs love sheena xxxxxxxxxx :-) :-) :-)

  • Kate....just curious as to what bone associations there seem to be with APS. My physicians have all of these pieces of my puzzle...I have fit them together myself and believe for the most part it is APS related. They arent as keen to this as I am and seem to want thier own area of specialty be the entire diagnosis.

    I have spinal stenosis and degenerative problems of a 70 year old and I am 48 years old. Oddly I just found this out this past month...always chalked the pain up to working too hard.

    Thanks for any insight on this! And Kate, thank you for your email response to my questions several weeks ago.

    I ended up in the hospital and now am home, unable to walk well so I have alot of computer time on my hands. Thanks again,

    Beverley

  • Karen well done on being famous and getting publicity alll info is good info.

    Please let us know how it is going

    Paddy

  • Just found the paper work I signed. The material will be presented / published

    for Oral, Poster, BSR and BHPR'S annual meeting and It maybe published in the monthly journal of Rheumatology ( print circulation around 2700and goes world wide.

    The Journal goes mainly to Doctors and Scientists,maybe seen by many non Doctors and non-Scientists including Journalists

    If published the material will also be placed on the Rheumatology website.

    website material after one year can be seen by the public for free.

    Local editions may be published in India and Spain

    I think thats it. I have been sorting out paper work today> I never throw anything out, well nearly everything I still have my Cycling proficiency Cetificate !

    Love Karen xx

  • Thanks all.

    Will make sure I get my Will sorted.

    When I get more infomation I will let you know, If I get a journal or two I might bring them to the Hughes meeting ? in May isn't Sorry my brain is on the other side of the room (Calenda ) and I might even sign some for you.

    I am not getting down being on antidepresants, makes me feel its happening to someone else. I can't even cry anymore.

    Love Karen xx

  • hi karen - i have a.v.n. [ avascular necrosis ] -osteonecrosis-aseptic necrosis, in the research ive done - these are all the same thing ??? poor blood supply to the bones, causing localized bone death. my rheamy found it in my hipps ,knees and feet. i have asked him , because of my a.p.s. and my other blood disorders [ 3 ] would this expedite the problem ?? of this he wasnt sure, maybe a question you could ask your doc an we may get some answers to benefit more of us with this problem ? what are your thoughts on this //// please let me know -------- thanks question ????? how many are there of us out there with this same problem- no matter which one they are caling it , i would be very interested to know- the more info we can put to our doc s the better in my opinion----------------------------- jet

  • I was under under the impression. that because of the blood being so thick ? with clots in it before I was put on the necessary anticoagulation and having it so long.( My son is 31 now born 31 weeks 1lb 14 oz ) and I must have had it then

    .

    It got better for a while started again ? 20yrs put on Asprin 75mgs. lgradually getting wose till I has a Heart attack, which probably saved my life. as it was then that the clexane improved brain etc.

    Apparently bones replace them selves x 3 in a life time. I have having Blood tests and urine tests to see if my bones have improved because of the warfarin I am now on. I have to have another MRI will make a change from my brain being done.

    I know my spine is effected my rt forearm ankles and probably more bones.

    My brain is a lot better since being on warfarin, hopefully it will stop anymore bone death. I

    He said their was treatment but he needed to know if the anticogulation was 'improving things

    I had blood tests vitd calcium can't remember the rest. urine 24 hour collection. and two separate unine tests on different days to measure bone turn over. thay are to be sent to to St Marys, Hope they don't break in the post : )

    I am not sure of the prognosis but I am thinking that skeletons ( dead bones are being found from thousands of years ago.

    I don't know the treatment, will just have to wait and see.

    Will keep you informed.

    I expect a lot of us have this. It makes you think which other parts have been damaged, never mind still here! really grateful for that

    Love Karen xx

  • Hi All

    New copy (approved by medical advisors) for the up and coming website (real labour of love still in progress):

    Bones

    In a small number of Hughes syndrome patients, the bones can be affected by a rather more acute condition known as avascular necrosis. Avascular necrosis is bone death caused by either permanent or temporary impairment of the blood supply; without blood, the bone tissue dies and, ultimately, the bone can disintegrate.

    If the process involves bones near the joints, it often leads to the collapse of the joint surface. It is most common in the hips, but can also occur in other large joints such as the knee, elbow, wrist and ankle. Avascular necrosis is also known medically as osteonecrosis, aseptic necrosis and ischemic necrosis.

    If avascular necrosis is not treated, the joint can deteriorate and cause severe arthritis. There are no symptoms in the early stages but, as the bone damage worsens, the person may feel pain in the affected area and the range of motion may be limited. If diagnosed early enough, treatment with anticoagulants can have a very positive affect in Hughes syndrome patients and slow the progress of the condition. However, if the avascular necrosis is fairly advanced, surgery may be necessary.

    One study (link to: ncbi.nlm.nih.gov/pubmed/153... has also indicated that, in some Hughes syndrome patients, the bones in the feet, particularly the metatarsals, can spontaneously fracture due to impaired blood supply. Again, treatment with anticoagulants (link to anticoagulants.htm), was also shown to be effective in preventing further fractures.

  • Thankyou Kate for that.

    I hope mine it was discovered before it has got to bad.

    Love Karen xx

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