What happens when trying is not good enough?

[Rowboat]

Finally saw a specialist today. He is the guy that treats my chest but he also looked after me in hospital after the Specialist (general medicine I think ) finished their rotation and went back to the city. And he did say when I was in hospital that he would see me and help me out after discharge.

$80 later......... thinks my headache and jaw pain are from a tension headache because I am worried about my TA and vision. I strongly attempted to put the point over about my worry about losing my sight ( I was even crying )I also said it would be nice to get rid of the headaches and jaw pain.

Conclusion, sent for a blood test, he promised to read the BSR guidlines and to ring my neurologist. Stupid me, thought I would be in hospital now on a pred drip. He called me back at 7pm last night and said I would hear from the neurologists rooms probably today for an earlier appointment than the one I have in November.

So now what do I do if I go to the emergency department of the hospital these guys become my doctors anyway. Plus my husband has had a cough for about a week and I saw blood in the toilet last night that he is coughing up ( bright red ) so I would like to make sure he goes to a doctor tomorrow.

[HeronNS]

Any vision problems, no delay, get to emerg. Can you get an early appointment to an ophthalmologist who can examine your eye thoroughly to check for signs of GCA? Not all eye doctors have the equipment, so ask when you make the appointment, and be sure to stress you want to treated as an urgent or emergency case, whatever terminology is best where you live.

Hope your husband's problem can be dealt with quickly, too.

[Rowboat in reply to HeronNS]

Thanks as i said no point in emergency room I will be seeing my eye specialist today.

[HeronNS in reply to Rowboat]

So the same doctors who already dismissed your worries are the emergency room doctors?

[Rowboat in reply to HeronNS]

I am seeing my eye specialist whom I have known for about 28 years at 4-50pm today. i trust him totally. if he finds any problem I will go straight to emergency. Just told by phone no specialist app till 7th Nov but they are working on it but won't get back to me today. Once i present at emergency eventually that specialist will treat me anyway. I am so discouraged right now.

[HeronNS in reply to Rowboat]

Hope you get some good support from the eye doctor. It is discouraging when the people who are supposed to be healers seem to forget that. All the best.

[SheffieldJane]

This is an anxious time for you Rowboat and my heart goes out to you. I see you doing that woman thing of putting everybody first before yourself. You had some faith in that chest doctor. Sometimes they don't convey a sense of urgency to us but you later realise that they are actually monitoring everything closely. It does tend to be rheumatologists that know most about GCA but a lot of us have had disappointing experiences with them. So he's put you in the system for a neurologist appointment. Are you still on high dose Prednisalone? Are you still experiencing head and jaw pain?

The Prednisalone is obviously your protection even though it can make you feel rotten, whilst on it I believe you are safe. Sounds like everything has conspired to put you in a panic ( I know that place too well).

Like everyone says - any eye symptoms go straight to the emergency room.

I assume by now your husband has gone for an x Ray?

I am sending you really warm wishes, you're a fighter and you will get the care you need. Cut yourself some slack and do restful peaceful things. Let us know what happens with you please. X

[Rowboat in reply to SheffieldJane]

Hi,

Once again thanks all

My eyes are fine well that is apart from the pred slightly increasing my pressures and my short sightedness script has gone down 4 levels, all will improve on lower pred.

I am still on 65mg of pred.

Husbands blood was nosebleeds due to being away in a humid climate and returning to a dry one with a cold bug

I see the Neurologist on Friday at 4-15pm. I have a list of questions to ask him but some input from you all about what to ask would be great thanks.

Woke up this morning could not stop shivering, felt weak especially in legs, couldn't finish my porridge :(. Has a GP appointment for scripts anyway (mine is away, the one I saw basically said she cant wait for mine to get back) on Keflex for infected finger now. Dunno what temp is battery in thermometer dead and could not get a new one today. Awake now and have a sore throat, I hope it is just a virus. Random blood sugar was good and yes if any eye probs straight to emergency.

[SheffieldJane]

Really glad to hear that one way and another you have resolved your awful worries. I guess you just want the Neurologist to confirm that there is nothing sinister going on to do with the symptoms you have been experiencing.

And now you've caught your husband's cold ( so glad it was just that). I think a hot toddy is in order for both of you.

[Rowboat in reply to SheffieldJane]

More than making sure there is nothing bad (had an MRI also heart ultrasound) the 65mg of pred is not controlling symptoms. I am getting bad temporal artery headaches and also very bad jaw pain. From what I have read on here and also the resources supplied from here, that means my inflammation is not under control

Thanks heaps SheffieldJane

[SheffieldJane]

I really feel for you and am out of my depth here. I have heard of people briefly being on doses of 80 -100 mgs. ( GCA) I wonder if it will come to that?

All the luck for your appointment, we're rooting for you let us know?

My husband has just said, when I asked about spelling, that this means something rude in NZ so I hope you are not from there. I just want to say that all the gang here is on your side. 😮

[PMRpro Ambassador in reply to SheffieldJane]

Severe GCA may be tackled by i.v. 100mg for 3 days - part of the recommendations I believe. There are certainly papers about it.

[Rowboat]

LMAO Rooting slang for making love, Thanks for the smile will post as soon as I can