CONFUSED Re: ESR Blood test results after an initial diagnosis from osteopath of PMR!

[antiglo]

I was referred to an osteopath for the pain that I had made a GP appt for, stating it could be peripheral nerve problem, osteopath disagreed and said he thinks it is almost certainly PMR. He suggested I go back to the GP and request a ESR blood Test.

My result came back normal they say, it was actually 2, in Sept 2012 it was 5 GP says this is normal.

That being said I have other health conditions one of which has taken them and a change of hosp 4 years almost to diagnose, It would appear most of my tests come back within a normal range and leaves the medical proffessionals baffled.

Currently seeing Osteopath once a week for 6 weeks, still lots of pain! at present.

[suzy1959]

I am not a great expert, but as the first responder, I wanted to let you know that a lot of people with PMR do not have raised inflammatory markers in their blood , so blood teats do come back normal. This means you could still have PMR. So I would suggest persuing this line of enquiry and not giving up. Diagnosis is still very patchy with this condition - it took 9 months for them to diagnose and therefore treat me, because they thought I was too young (52) and because I didn't have stiffness in the mornings. It seems that the best way of diagnosing they have at present is to give you steriods and, if they work where no other pain killer has worked, you have PMR. Good luck!

[Celtic PMRGCAuk volunteer]

Hello antiglo

I echo Suzy's advice to pursue a definitive diagnosis as the ESR and CRP test results are not reliable as a diagnostic tool as far as some sufferers of PMR are concerned - somewhere approaching around 25% if I remember correctly. In this case, in order to reach a diagnosis some GPs do trial a short dose of steroids and generally if you respond with about 70% reduction in pain within a few days, sometimes within hours, they will use this as confirmation of PMR.

Meanwhile, be careful that the osteopath is not carrying out too much manipulation, if any, - physiotherapy, for instance, is certainly contra-indicated especially in the early days of PMR, as I found out to my cost! Do push for a diagnosis - if you have got inflammation in your body causing the pain the sooner it is controlled the better. Good luck.

[antiglo in reply to Celtic]

Thank you for the replies and helpful suggestions. I have given up really with my GP, trying to get an appointment is the first hurdle! but I will try again.

Without boring any one, this is the last straw for me, as I have been quite poorly with significant weight loss now for more than 3 years. In january of this year my GP referred me to another hospital, new consultant who diagnosed me within the first consultation with Chtronic pancreatitis, there is a family history but the previous hosp/consultant once again didn,t bother with that as once again all my bloods scans etc seem to come back within the normal range!

Alongside this I already had adiagnosis 20 years ago of Fibromyalgia, and 10 years ago was diagnosed with Graves Desease and had a partial thyroidectomy, for this I had to persistently go to the Dr for 12 months with the symptoms until one day after seeing a consultant privately I collapsed, Probably the shock of an actual diagnosis!

I dont relax easily, but these days find it more difficult to drum up the energy for things (59) the brains willing but not the body. Sorry for the length of this post, if anyone has any helpful suggestions would be grateful.

[Celtic PMRGCAuk volunteer in reply to antiglo]

Hello again antiglo

I'm sorry to hear what a horrid time you've had with illnesses other than PMR. Unfortunately when we suffer from one autoimmune condition it can sometimes lead to another. You don't say where your pain is but the pain of PMR usually manifests itself around the large muscle areas of the shoulder and hip girdles with pain and stiffness being felt around those areas, in the spine and often starting in the groin area and down the front of the thighs. Sufferers often have difficulty in getting out of bed with the worst of the pain and stiffness lasting most of the day, sometimes easing later in the day. Hopefully, especially in view of your history, your GP will refer you to a rheumatologist as soon as possible.

[antiglo in reply to Celtic]

Thank you Celtic for your response, the area,s you mention are affected I am also finding a lot of pain in the neck head area now, yesterday on waking I didn't feel so bad but as the day went on it just worsened. I was only saying to my husband a couple of weeks ago that i hadn't had a headache for months and months nopw it is more like a pain than a headache, all a bit strange.

The whole point of this it has changed my life so much, from working full time until 3 years ago, my health is restricting me so much, I feel so frustrated and feel like I am stagnating. I developed a hobby of making preserves which then grew to a managfeable level of putting hampers together, but now I cant do much of that for the pain in my arms / shoulders when I am stirring!! suppose I am frustrated, a little angry and depondent with my health and lack of knowledge from medics.

Sorry if that was a bit of a rant, I am a very placid/calm person really, having been a counsellor for many years.

[Celtic PMRGCAuk volunteer in reply to antiglo]

Hello again antiglo

As you are having to wait a week before your GP appointment, and you have now mentioned suffering from head pain, I just wanted to let you know that in the meantime you should be alert to any unusual symptoms with your eyes, such as blurred vision or pain, or any worsening of the head pain. These can be symptoms of Giant Cell Arteritis, a linked condition to PMR, and signal the need for immediate treatment with high dose steroids to protect your sight, presenting yourself to A&E if necessary. Good luck.

[Pipistrelle]

Im sorry to hear of these difficulties. To be honest I'd very much try to et a GP appointment and referral to a rheumatologist, some of these symptoms would fit with a range of rheumatology conditions and an osteopath isn;t the right person to diagnose. I'd wonder about PMR -- if the pain worsens through the day. With PMR it is more typical for pain to be most severe in the morning and to ease to some degree, as the day progresses. There are many forms of artiritis as well as auto-immune conditions that could create this type of pain. As others have noted ESR is sometimes normal with these conditions. CRP is a better test but even then can be misleading. I

d be seeking a referral to a rheumy. Be sure to read through symptoms for GCA -- related to PMR -- as headaches would be more typical of GCA and if you are having symptoms around that it would be considered an emergency and very urgent to see a rheumy/check in with emergency dept at a hospital near you.

[antiglo in reply to Pipistrelle]

Thank you all for your helpful reponse I have managed this morning to get an appointment with my GP on Thursday 19th, so we'll see what that brings. I will also look at the website you have sent me. keep you posted.

[jinasc]

Angtiglo

Go to the National website, the North East pmr-gca-northeast.org.uk website and if you cannot find them there, go to the BSR website.

Download the Diagnosis and Treatment of PMR issued by the BSR and read it. To diagnose PMR it is an exclusion test then if all else fails a trial of pred, if it then works, its PMR.

[antiglo in reply to jinasc]

Thank you so much for the info, will have a look and have now got appointment for 19th with GP.

[cashpuppy]

Hi Antiglo, I have had almost the same experience! My Rheumy confirmed I had scleroderma 2 yrs ago and started treating the symptoms and then just recently I presented with symptoms for pmr so I had blood test that came back in the normal range. She first suggested I go on steroids because of the sudden rash, different pain etc.(20mgs) and after reviewing the blood work wants me to stop the steroids all together. I must say I am greatly confused and in pain!! Thank you for sharing your experiences as you struggle with your health - these chronic immune diseases are the pits! You should be examined for GCA asap if you can. I wish you all the best.

[antiglo in reply to cashpuppy]

Thank you cashpuppy, I know it is so frustrating. I am considering going to a wonderful Dr who looks at tests a completely different way to other Dr's it will be private but am at the stage where I have no alternative, 12 years ago when all other gp#s were dumbfounded and said there was nothing wrong , I had legs like elephants from ankle to knee, racing pulse, collapsing on the odd occassion, etc etc. she only examined me did bloods and found out it was my thyroid, I had Graves Desease! ended up having partial thyroidectomy 2 weeks later! Her name is Dr Sarah Myhill you can have a look at some of the stuff she does by googling her. Take care

[cashpuppy]

Thank you Antiglo I will do so. Thank you for your reply. You take care also.