I'm new to this issue of GCA, my rheumatologist isn't much help, so I'm thinking of going to see someone specialised in this (if they exist) as for the past few days my legs have been killing me, mostly calves pain. There's no DVT, so I need to look further into the cause. I understand that GCA may cause limb claudication, so I want to have that checked properly.
Do you have any good experience with vascular surgeons or rheumatologists who understand and treat GCA in Surrey? Or even Hampshire?
Many thanks.
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Purpletop
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Purpletop, I'm in Surrey and can recommend an excellent rheumatologist at St Peter's Hospital, Chertsey, who has a special interest in PMR/GCA and has been involved in research. He treated me for both PMR and GCA for a few years and is, in fact, mentor to our local PMR/GCA support group as well. A couple of other members who contribute to this forum are under him and will, I'm sure, also recommend him if they see your post. I can send you a personal message with further details if you are interested.
Hello Purpletop,I agree entirely with Celtic re The Best Rheumatologist that I have seen with all my years with PMR ..He is kind and understanding and most of all He Listens !! If I'd had him in my early years with PMR then I wouldn't still be struggling !! I will be watching your posts with interest to see how you are getting on . I hope you have got lovely sunshine this morning, I also live in Surrey and belong to the PMR/GCA Support Group that Celtic has mentioned ..Best wishes trish29
Hi Celtic, I'm currently under the care of a rheumatologist at St Peters and was wondering if it's the same guy? Sorry I'm not sure how to contact you directly so I can mention his name?
Underlee, I've sent you a personal message with his name - hope it's him!!
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Hi just read this post with interest. I have PMR/GCA, six years plus; got a lovely rheumatologist (and seeing her mid April for a check-up) at Queen Alexandra hospital, but she due to retire any moment now. I'd be really grateful if you could pm me with this specialists details as I'm having more and more problems for the last year... getting nowhere. Many thanks. I live in Hampshire.
hello Celtic, I’m urgently looking for a rheumatologist consultant in the surrey area that comes recommended - if he is still practicing can you let me know please , thanks
Hi Purpletop, my pain also resides mainly in my calves although it does also affects my quads, hamstrings and hands. I was wondering if it's the same for you?
i have this too. and if i could cry i would. i feel pretty good when sitting or laying down. but standing in place is a killer. i have a nerve in my leg which i understand is the longest nerve in the body. i also have stynosis, in my spine. which pinches the nerve in my leg. it is called sciatica. and as long as i'm up [standing in place i am i great pain.
i mentioned it to my GP , he just told me why that nerve hurts so very much. but went to a specialist , and he daid it was a very risky surgery. i suppose my age has something to do with it. i am 81, and i really don't want to make things worse. so
i'm stuck with it . let me know how you make out, thanks so much.
I had pretty bad sciatica before I knew I had pmr. It seems to be much better now, although I can no longer sleep on my side. I don't notice my hip when I walk at all any more, which is pretty fantastic as I was really quite miserable until two or three months ago. One of the treatments I've been getting (from a physiotherapist) may be what is helping, and that is "dry needling". It relieves the clenched up muscles in the spine and that in turn must have alleviated pressure on the sciatic nerve. It wasn't an overnight cure, and I'm not even sure that is why my physiotherapist did the treatment, but I am very much more comfortable now. You could ask about this and maybe it would help. I don't think anything cures these ailments, but just having some relief could be significant. There may be other spasmed muscles involved, too, and a physiotherapist could evaluate you for that. I have done exercises for many years that are supposed to maintain back and spine strength, ever since I discovered that one of the nerves that's involved (have OA in spine) seems to cause numbness down one side of my body (When I first noticed this, thought I was having a stroke, and was completely evaluated at hospital emergency - I was still young enough at the time they thought it was worth paying attention and keeping me functional!) These exercises probably helped the sciatica to some extent but not enough.
thank you @ heronNS, i don't know if i can find a physiotherapist in milw. or one would be in my insurance co's listing , but it sure would be worth a try,. even if it helped a bit, it would be worth trying. i will let you know what i come up with.
thanks heronNS. i have yet to find a physiotherapist. but will look today. it's monday now. that helps/
it seems like the sciatic pain used to just go to my knee , then i had a cat-scan, and they injected a dye , which never bothered me before . but man, this time it sure did. the nerve pain went right down to my foot. and for a few days my feet acted like they were under two goofy brains. one didn't know what the other was doing. and they were going off in different directions. and my eyes bothered me a lot. everything that i was looking at [reading] was jumping lines. which made it impossible to read anything. well that has cleared -up. but my leg sure hasn't . and i'm still walking like i'm a bit drunk. and i haven't had a drink since 1971. maybe i should drink, maybe my feet would straighten out. i take three vicadin a day. but then the pain seems to get better at night. not gone , just improved.
well that's all i can tell you. as of right now. i will start looking to day.
thank you again . at least i don't feel alone. which is nice.
That doesn't sound good. I don't want to scare you, but my stepmother had to undergo a heart procedure and afterwards her kidneys failed - a result of the dye, which poisoned organs that must already have been compromised, but no one had checked. If you ever have to have a procedure using dye again, please ask them to make sure your kidney function is checked first - I think they can avoid causing more damage if they know ahead of time. Meanwhile it sounds like you just need to be taking your time and getting some rest - tomorrow is another day.
thanks HeronNS. thanks too for your step-mother in law went through. i have two tests coming up tomorrow and next thursday. my scaitic nerve also moved to below my knee, in the calf of my leg. and now i'm getting cramps in my shin -bone on my right leg. i think about all i can do is try to walk it off. it seems the busier i get the better it feels. Odd and strange.
oh well just so parts of my leg are feeling better. the other parts get a little rest. i have been having problems keeping anything i eat down. and it seems to be getting worse . now they want to see if anything is blocking food. or even my smoothie. up it comes. mostly when i get stressed out. or eat to fast. don't like the tests , but what cha gonna do? one i have to swallow my slower, i don't want any more pills.thanks for staying in touch.
love you, judi PS it is nice to have company thru all this crummy stuff.
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