CT Scan Tomorrow

[PMRMiltonkeynes]

12 days ago I got sent by my GP straight to the Acute Emergency unit at my local hospital after I had suggested (after being ill for 7 months) that I may have PMR as two people suggested it to me. My ESR (inflammation marker) had jumped form 19 to 63 since June and I cold not get myself up off my back off the GP's examination bed! I saw a consultant very quickly that day and after a thorough examination he agreed that it's 90% likely I have PMR and put me on steroids immediately. After a few days I felt around 70% better and the pain has reduced enormously.

Tomorrow I am having a CT scan of my thorax, abdomen & pelvis and they are also checking for any malignancies.

I rarely worry about medical things but I am feeling very nervous this evening. So glad they are at last moving quickly to get me a diagnosis but it's been a long time coming!

I have 'pain' in the middle of my back on either side of the spine. Before the steroids it was very painful. Although the pain is now very subdued I can still feel something is not right in that area. Since starting taking the steroids one thing I have noticed is every now and again I take a sharp intake of breath. It's completely random and I have no control over it.

Hoping for a reasonable positive outcome tomorrow. Apparently my haemoglobin is 10.2 which is apparently low but no idea what that means.

Any information or comments would be useful.

Thank you very much.

Sue

[Celtic PMRGCAuk volunteer]

Sue, having a 70% improvement in our pain levels within a few days of taking steroids is often taken as proof of PMR, which can be especially useful where patients do not have raised markers of inflammation in their blood. In your case with an ESR of 63, it is quite likely that along with the 70% improvement, when the ESR is repeated it will also show an improvement.

Your low haemoglobin may be a sign that you are anaemic, and that is often found in patients with PMR. My levels were also low at the outset of PMR, leading to a diagnosis of anaemia but it righted itself without treatment.

In the absence of any diagnostic test for PMR, it is usually a diagnosis of exclusion, hence the CT scan tomorrow so do try not to worry - the remaining back pain that you mention is very likely to be PMR-related as very few of us become completely pain-free down through the doses, and it is very early days for you. Best wishes for a clear result tomorrow.

[PMRMiltonkeynes in reply to Celtic]

Ah thank you 'Celtic'. That is no nice of you to post this for me. Very reassuring. The back 'pain' has been concerning me to be honest. I will sleep much better tonight

[mirren in reply to PMRMiltonkeynes]

Good luck today, sounds like you have had very good, thorough care, the CT scan is evidence of that. The peacecof mind you will get that your team are leaving no stone unturned will help you a lot, though it's scary waiting for tests and results! Some parts of NHS is still very belts and braces which is great, but can make patients worry, as we think they are hiding what they "really" think is wrong, when they are actually just excluding it. Your HB as a woman should be around 12-14 so yes a little anaemic, they should check your b12, folate, and ferritin, (and vit d levels) but meantime you can eat iron rich / folate rich oods (dark green) and a general supplement containing folic acid just to help things along xx

[PMRMiltonkeynes in reply to mirren]

Thank you so much 'Mirren'. Really appreciate your comprehensive response and suggestions. It's just going to be good to know exactly what is wrong as you can work with it then. The not knowing has been the worst. Have a good day. Sue xxx

[bowler]

Like mirren said , good idea to get your iron levels checked especially B12, but avoid supplementing before having the test as this will mask the the results.

God luck

[PMRMiltonkeynes in reply to bowler]

Thank you 'bowler' for the advice Seeing consultant and my GP this afternoon for results of CT scan so will discuss then

[PMRpro Ambassador]

I think you should feel very honoured! To be sent as an emergency to A&E with query PMR, put onto steroids and to be scheduled for a CT within a short time is pretty much best practice! PMR is not the illness itself, it is the name given to the symptom of some underlying cause and included in the list are some forms of cancer. The PMR we talk about here is due to an underlying autoimmune disorder.

As the others have said, slight anaemia is often found in autoimmune disorders of many sorts but also in a range of other illnesses so it is always the correct procedure to rule out everything else it could be.

[PamelAnneCT]

Definitely get your B12 checked, apparently my PMR started last November with pernicious anemia and a sed rate at 14. Blossomed this past June and it's been a bumpy road. I also have had this odd pain inbetween my shoulder blades on each side os my spine and I had an MRI last week. Apparently I have some disc issues, not unusual for a 53 year old, and physical therapy has been recommended to keep things strong. (The thought of working out is horrid!). Good Luck!

[PMRMiltonkeynes]

Hello and thank you for your words of advice I love keeping fit and not being able to do the normal 'gym' routine is frustrating. However started restorative yoga which is so relaxing and lovely and will start gentle swimming after my results today. Best of luck to you too with your disc issues xxxx