Update on lisa630

[Lisa630]

Morning everyone just wanted to let you know I got admitted last night to A&E by GP.

7 hrs later I was released at 2.30 am. .

On arrival they took my blood and only talking of a ESR test, which I thought was odd it's the CRP levels that will tell them if Pred is working or not. . But I said nothing for fear of being " a know it all"

But 2 hrs later they realised the ESR levels told them nothing and i had more blood taken and a further wait, saw an ophthalmologist who checked my eyes throughly all ok, and eventually got CRP levels back and they were 30. . . . . 3 days ago they were 86 so I was happy with that Pred is doing it's job, they decided to keep me on same 40mg of Pred and to take it easy and come back straight away if I experience any further vision probs.

she is not convinced I have GCA at all . . . And said the biopsy is most probably going to come back negative due to STERIODS and time time involved, but it's a box that needs ticking . . Her words!

I'm keeping an open mind and just doing as I'm told and being sensible about what I'm doing I'm not one for resting up. . . I'm. Busy outdoor girl, but realise I need to rest up and let my body catch up so to speak. . .

So there you have it . . . Do I don't i. . .time will tell won't it . . Thanks every one for you kind words . . . We are all on this journey together . . . Far better than alone. . . X x

[Celtic PMRGCAuk volunteer]

Lisa, I'm sorry you had to go through the A&E experience but so pleased to hear that they took it seriously. It must be so reassuring to have had your eyes checked by an expert and to know that they aren't showing any signs of damage from the inflammation. I do hope that the headache will now clear quickly as the inflammation continues to improve on the 40mg dose. At least they learned in A&E that it isn't sufficient just to do an ESR blood test - it is rare (but not impossible) to find a normal CRP in patients with GCA. Whatever is going on, at least the 40mg dose is bringing the inflammation levels down - very very wise of you to realise that you need to rest to improve further. Take care and I hope you feel better soon.

[Hidden]

Lisa

Try this, spread your fingers through your hair and gently tug all over (bit like Shiatsu).

Every hair on your body is attached to a little muscle and the gently tugging can release the tension.

I used this tip (from a Director of Hairdressing) all the time I had GCA and it worked. I still use it, although I have been in remission for nearly 3 years now, whenever I have a headache or feel one

coming on.

I notice you said "Far better than alone." We called our DVD, made by Patients for Patients (with some expert medical people as well, "You Are Not Alone".

[Lisa630 in reply to Hidden]

Thank you Smoky I will try that . . .

And yes this odd disease does make you feel a bit of a hyprecondriact people are beginning to say oh good to see you better just because I'm walking around etc, and trying to carry on daily duties (light I promise) I am very bad and taking things easy the country life we live means things have to be done regardless. . . But I'm getting better at asking for help. . With carrying feed bags and things like that . .

But you do feel very alone as no one has heard of GCA let alone understand what it is . .. In time I'm going to ask my health centre if I can be a local support person for any future sufferers . . Even if all I can do is sit and chat to them and reassure them it will be job well done. . . And of course I will be them to job up here. . You guys are brilliant . . . X x

[sandiego in reply to Lisa630]

Most people haven't heard of GCA. When I was first diagnosed my GP said it was a disease of old heavy smoking men! It was a young Doctor at A&E who diagnosed it and I was very lucky!

[PMRpro Ambassador in reply to sandiego]

I hope you went back to your GP and disillusioned him very thoroughly! No wonder middle-aged ladies go blind due to mis-diagnosis if that is a concept that is circulating. Because it is utter tripe.

It is comforting to hear the number of younger medics who are recognising it though.

[mega in reply to sandiego]

Agree sandiego. Most DOCTORS haven't heard of GCA or at least are unable to recognise it and what a weird comment from your doctor.

There are five in my practice and my GP (a lovely woman) consulted them all with my symptoms none of them came up with an answer.My blood was "deranged" she said, seeking an appropriate word. I was "unique" in her experience, because every test they did came up negative. Sent to oncology in the end, feeling absolutely dreadful all this time, and after several of their tests Lupus and bone cancer among them, it was suggested (and these words are burned into my memory) that "there is PERHAPS a POSSIBILITY that it COULD BE giant cell arteritis. I, too had never heard of it and not unsurprisingly heard 'arthritis'!

I was reluctantly put on steroids but they were like a miracle.

I suppose we have to accept that there are numerous diseases or 'conditions' which are rare or unusual enough for GPs not to recognise them. At the same time, symptoms of GCA are pretty specific.

[Lisa630]

People keep asking me how my arthritis is. . .

[sandiego]

That is what I get too! Very frustrating. Fed up of explaining so mostly let it go now

[Lisa630]

The best bit is . . When mention blindness . . I get the . . Oh for goodness sake . . Really do you have to be so dramatic. . . They have no idea on the severity of the condition. . This includes my husband to I might add, not sure he undstands what's really going on. .

[PMRpro Ambassador in reply to Lisa630]

It is probably a better option to tell them you have a vasculitis (inflamed blood vessels) that can cause a specific type of ischaemic (lack of oxygen supply) stroke which always affects vision. Which is more accurate and most people DO get the idea of stroke risk.

[sandiego in reply to Lisa630]

I was really lucky with my eye care with the hospital and the Optician. The Opticians seem to know more then some doctors.

[mega in reply to sandiego]

Sandiego, 2nd reply to you tonight!

I had completely the opposite experience at the opthalmology dept at my local hospital. I had quite severe double vision and mentioned that I had GCA but it did not appear to impinge on them at all. I was told that it was unusual to have images one above the other, rather than side by side but nevertheless I must exercise my eye muscles by using a Biro pen to focus on. Totally useless! I tried it for a few days then gave up.

In the end I needed two cataract ops., one in which I'd had a cataract developing for sometime and the other in an eye which I had been consistently told over the years that if my left eye was as good as my right, I wouldn't even need specs. Still, I am one of the lucky ones who hasn't lost their sight, for which I am eternally greatful.

[olive2709 in reply to Lisa630]

Tie you husband to a chair give him Kate's book and make him read the chapter on GCA My husband wanted to wrap me up keep me at home not let me move it frightened so much got him to read chapter so I could move without supervision. I think with men it's not something they can fix so they are just frightened. Olive

[Lisa630 in reply to olive2709]

Kate's. . Book. . ?

I'm my own worst enemy mind, carried a bale of hay down to duck shed today to bed them down. . We are wildfowl breeders working very closely with slimbridge wetlands trust. Have rare breeds and they all need looking after, and if I have some energy I can't resist but to go out and do a bit, I've been ok today been hospital for tests on other end and even managed to clean dog kennels out . . . Pred is doing its stuff obviously . .

Blood tests again Moro to see what the levels are now. . . I'm feeling confident they have lowered further since Friday's results of 30 (CRP)

Fingers crossed I'm on the winning side . . Of being able to live a sedate life. . . For a while. .

X x