The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Dr Gavin Spickett

Discussion in 'ME/CFS Doctors' started by chelseadagg3r, Jul 3, 2016.

  1. chelseadagg3r

    chelseadagg3r

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    Hi there!

    I've not been able to find anything even close to recent about Dr Spickett's service at the RVI in Newcastle, so I'm hoping you guys might be able to shed some light for me! I was referred a month or so ago to Dr Gavin Spickett and lucky for me, he accepted my referral. I'm due to see him or a member of his team in mid-August, and I was wondering what I might get from the first appointment and what he's like. I've have CFS/ME since I was about 9, and my GP thinks I've had fibromyalgia for just as long, too, however the paediatrician I was seeing at the time refused to acknowledge someone at my age (at the time 13/14) could have such a thing, so it never got discussed. He's agreed to start me on treatment for fibromyalgia after I've seen Dr Spickett if he agrees. I'm now at the point where I can hardly walk and I can't be very independent anymore, so I really need to find out what's wrong! I'm not happy with just a bunch of diagnoses and then a 'you also have these symptoms/blood problems that don't fit but I guess there's not much we can do about that' so I'm really really hoping to get a definitive answer about what is wrong with me. I'm nearly 19 now and it's completely derailed my life. I'm giving college another try in September, so I was hoping that there would be some kind of plan in place by then too for any treatment. Any experiences you can share with me are greatly appreciated! I have heard once or twice that he's good at figuring out even the really tricky cases, and so far mine has stumped everyone! I've had so many scans and tests I practically live between the hospital and my GP surgery! Thanks in advance!

    Chelsea
     
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  2. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Hutan likes this.
  3. ryan31337

    ryan31337 Senior Member

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    Hi @chelseadagg3r,

    Sorry I can't help with your questions but wanted to ask if you'd be willing to share what blood problems you have? Just something I'm keen to learn about at the moment :)

    Ryan.
     
  4. chelseadagg3r

    chelseadagg3r

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    Sure, no problem at all. I have raised platelets and iron deficiency. Iron supplements for 6 months didn't bring up my iron at all, but I don't have a genetic bone marrow disorder. It wasn't until I'd started seeing a new GP that they noticed this was a trend and had been found on every blood test I'd ever had, my first being at about 7 or 8. A haematologist I was seeing up until a year ago couldn't find any cause for this at all and no one can figure out why it's stuck like that. Hopefully the new haematologist I'm seeing in August might have an idea :)
     
  5. wastwater

    wastwater Senior Member

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    Could it be genetic,did your mother have low iron
     
  6. chelseadagg3r

    chelseadagg3r

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    None of my family have had this problem, that I know of at least. Definitely not my parents or their parents.
     

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