Unfeeling unheard 2

[vsapey]

Hi Everyone,

This is a continuation of my "feeling Unheard" post.

Have had PMR symptoms since July 16 and GCA symptoms since Sept 16.

I have seen 2 rheumatologist either will give a definite diagnosis, especially with GCA. To me my symptoms seem to fit very well and the response to steroids (50mg) was almost immediate. BUT my blood test are not showing high levels

My 2nd opinion rheumatologist is suggesting my symptoms as caused by MS which I also have and would also respond to steroids. I agree there would be a possible overlap of symptoms. She is waiting to here from my neurologist.

I saw her last on 16th Dec. At this time I had reduced with the help of all of you and my gp to 35mg. On this dose I found I would get pain in my temples, jaw, back of neck and scalp, mainly in the evening. Nothing too severe. She wanted me to reduce straight away to 30mg, I didn't though I reduced slowly over the Christmas period and have now reached the 30mg. Symptoms now are the same as before with head plus pain and stiffness has returned in my right arm, my left foot, and right hip and buttock.

So I still feel very confused, I have no faith in the rheumatologists. One thing I don't want to do is increase steroids again. I feel so much better with less side effects.

My daughter wants me to phone rheumatologist nurse but I feel I can't go there again.

Feel I want to keep reducing and see what happens symptoms wise then maybe I can distinguish between MS, UCTD and GCA/PMR SYMPTOMS.

Please let me know your thoughts

.

[Celtic PMRGCAuk volunteer]

vsapey,you obviously need an expert opinion. Whereabouts are you? There is a wonderful rheumatologist at St Peter's Hospital, Chertsey, Surrey, with a special interest in PMR/GCA having been involved in research into these conditions - well worth travelling if you aren't too far away at the other end of the UK. I can give you further details if you think it might help.

[vsapey in reply to Celtic]

Chertsey is not too far. Can you self refer or do you go through your GP? Is there a long wait do you think? X

[Celtic PMRGCAuk volunteer in reply to vsapey]

Dr Hughes sees patients both privately and on the NHS but it is likely to take at least a couple of months via the latter unless your GP can be persuaded to refer you as an emergency in view of the GCA possibility and its risk to eyesight if left untreated. Out for lunch at the moment so can contact you again when back home later with all contact details.

[PMRpro Ambassador in reply to vsapey]

If you go privately for a single session and he feels it is warranted he would add you to his NHS list I think.

Did I not suggest this earlier? I was sure I had.

drrahughesrheumatologyltd.com/

[Celtic PMRGCAuk volunteer in reply to vsapey]

I have sent you a personal message with all details, including both NHS and private secretary's telephone numbers.

[vsapey in reply to Celtic]

Thanking you very much

[vsapey in reply to Celtic]

I am in Kent near M25. Husband from Surrey so he knows Chertsey. Thank you

[Celtic PMRGCAuk volunteer in reply to vsapey]

Good! And you won't be the first person to have travelled from the Kent area to see Dr Hughes! Also, a member of our support group in Chertsey comes all the way from Kent! By the way, talking of support groups, are you aware that there is a PMR group that meets in Kent, plus several little cafe meet-up groups dotted around the Kent area. Might be helpful for you if you do eventually have a definitive GCA diagnosis.

pmrgca.co.uk/groups/

[vsapey in reply to Celtic]

No I didn't realise thank you

[vsapey in reply to vsapey]

No I didn't realise thank you

[DorsetLady PMRGCAuk volunteer]

As Celtic says, you need a definitive diagnosis. Your head/neck pains do sound suspiciously like GCA, but your other pains are a bit of a puzzle, normally with PMR or GCA we would expect them to be bilateral. As for your bloods, many people's aren't raised, but the doctors set so much credence on them, it's difficult to get them to see past the low readings at times.

Do hope your get things resolved very soon.

[vsapey]

Thanking you for all your replies so far, I am very grateful.