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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Dr Gavin Spickett

C

chelseadagg3r

Messages
3
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
 
C

chelseadagg3r

Messages
3
ryan31337 said:
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.
Click to expand...

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 :)
 
M

MEmyselfandI

Messages
11
chelseadagg3r said:
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
Click to expand...
Hi Chelsea, I have been accepted to Dr Spickett too but am still waiting an appointment date. Please can you let me know how you get on as you will no doubt be seen long before me! Many thanks :)
 
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