Hi my name is mussarat I have had a raised inflammatory markers for the last six months which my gp has not been able to get to the bottom o

[mabs786]

[iforget]

Hi there...raised inflammatory markers could mean any number of things and are simply an indication that there is some kind of inflammation in the body somewhere...on their own they are ever so slightly useless really...

What symptoms do you have that brought you to this board? Has your GP suggested you may have PMR?

[mabs786]

Thankyou for your reply I didn't realise my whole post hadn't been listed ill try adding it to this:Hi my name is mussarat I have had a raised inflammatory markers for the last six months which my gp has not been able to get to the bottom of to within this time I have had severe headaches pain which started in my right temple and is now in both. Both temples tender and painful to touch not so much jaw pain but feels like toothache which dentist can't figure why stiff and painfull neck all the symptoms of pmr I am positive I have gca but because I am 41 my neurologist and gp will not even consider it even though I have had mri and ct scan of head and body with no obvious suggestions. What would you suggest I could do I am at my wits end my life is at a stand still I'm losing hope aswell as the energy to do please help. 

[PMRpro Ambassador in reply to mabs786]

Do you also have any scalp discomfort or any blurring of your sight, especially in the morning? Were your MRI and CT just ordinary ones - or did you have contrast? By that I mean did you have something injected or given by a drip before they were done? Have you been to an optician and asked them to examine the back of your eyes? They can see if the blood flow to the optic nerve is impaired and if your GP won't consider a referral to anyone else you could try that route.

This paper was published in 2005:

Giant-cell temporal arteritis in a 17-year-old male

Iraklis I. Pipinos, Russell Hopp, William D. Edwards, Stanley J. Radio

(I'd give you the link but it will be stopped, just google it and take it to your GP, more cases are mentioned in the references)

Although GCA in under 50s is very unusual it happens. Last year a 37 year old in South Wales was found at post mortem to have had GCA (after dying of something else). The last time I looked at stuff for this question I think I found about half a dozen cases in the literature.

As MrsO has said, it is very difficult for young patients with classical GCA symptoms to be taken seriously - especial when there are papers that say categorically it doesn't ever happen in under 50s.

However - there are other forms of vasculitis which might have similar symptoms and it is a vasculitis specialist you would need there. There is a vasculitis forum on this site - if you go on there there are people who could guide you as to what you can do. At least, they can if you are in the UK - where do you live?

[mabs786 in reply to PMRpro]

I don't have any scalp burning more of stinging sensation on my face sometimes the head mri scan was without contrast . My gp referred me to neurologist who as soon as I said headaches diagnosed me with migraines he did no physical examination at all or ask of any other symptoms I try to tell him of pain in my temples and he laughed at me and said oh are you a doctor I was disgusted with his attitude.

I have also been referred to rheumatology as my mum has vasculitis caused by rheumatoid arthritis but they couldn't find any thing.

I have also read the the articles you mention this is why my blood boils when so called specialists won't even listen. My gp on my last visit told my that all her fellow consultants and self would have a meeting and discuss what they should do with me doesn't that sound lovely lol my next visit is on 13th hers hoping.

[PMRpro Ambassador in reply to mabs786]

I'm disgusted too - if they won't listen to a patient reporting their signs and symptoms there isn't a lot of point or hope. Saying what pain and sensations you feel is hardly "being a doctor" is it? They soon whinge that patients don't come to the doctor when they have all the symptoms of x,y or z - but they never actually TELL anyone what to watch out for.

When groups like ours hold the hands of patients who have been failed left right and centre and given no info we are criticised for playing Dr Google. I, too, had a consultant who ignored what I was telling him about symptoms and how I responded to pred - mercifully it wasn't full-blown GCA and a different GP was far more helpful. I'm sorry - we aren't in a position to do more. The doctors have to do their job - and when faced with a patient at the end of their tether and unable to live a normal life their job is to find some way of helping them not laughing at them. I assume you are female? I'll lay odds they are playing the "hysterical"/"depression"/"pre-menopausal" cards as well.

Bah!!!!!!!

[mabs786 in reply to PMRpro]

Lol yes I'm a women and i dare them to play the pre neanpausal card!! Only I know what I have been going through and this stamps all over hot flushes for choice of better words. This condition does not just have morning stiffness it has 24/7 day week stiffness I wake up each day dreading if it's gonna be oh yes I can actually make a cup of tea today or damnnnn who can I beg for that morning brew so I can take my pills.

[PMRpro Ambassador in reply to mabs786]

Yup - they need to be tied in a straitjacket and told to get on with living as they often think we should!!!!!

[soojay]

So sorry.....be persistent and point Dr.to website.Good luck.Hug.Soo.

[mabs786 in reply to soojay]

Thank u for your support Dr's seem to be good at pointing patients to websites but not the other way round lol they just look at you as if to say erm excuse me who's the Dr here me or you !!

[Celtic PMRGCAuk volunteer]

mabs, the jaw pain in GCA is usually experienced only when chewing. We do have a couple of ladies who post on this forum who have also experienced long term problems in trying to get a definitive diagnosis for their pain. Your neurologist and GP should certainly not be discounting the possibility of GCA at the age of 41 - it has occurred in even younger people. As to what you can do now, perhaps you can seek the opinion of a good rheumatologist who may at least suggest carrying out a biopsy of the temple area, although it has to be said this doesn't always give a 100% reliable result, as sometimes the large cells they are looking for escape the tiny area biopsied. Meanwhile, just remain alert to any problems with your vision, such as pain or blurring, in the case of which you should take yourself off to A&E as a matter of urgency.

[Hidden]

My jaw pain comes on at rest and feels just like toothache. If I hadn't had GCA I would never have guessed what it was.

[mabs786 in reply to Hidden]

Well at first i thought the same my dentist took ex rays and said nothing wrong with your teeth but then i clicked on when i read more on the symptoms of gca made sense.

[Runrig01]

Hi mabs, my story is similar to you, except I already have a diagnosis by rheumatologist for Atypical PMR. My symptoms started at 46 and it took 14 months to agree on diagnosis. 3 months after starting steroids for PMR I developed burning temples, jaw cramping when chewing, tongue pain with discoloured patches and tongue spasms at night keeping me awake on average 2 nights a week. Like you have had MRI & CT scans which were negative. I had the biopsy 10 months after starting steroids again negative. My bloods have always been normal which adds to skeptism from Rheumy! I have seen a neuro who agrees this is possible temple arteritis, and sent me for dermatology and ENT opinion first. I don't see neuro till end of July! Meantime as I reduce my Prednisolone more symptoms arise. Since April I have had cramp in right arm and vertigo, went back to see Rheumy who still states it can't be GCA and suggested just stopping steroids, he was given a very clear NO. Like you I'm at wits end as you feel like they must think your inventing these symptoms - I have photos of tongue which prove otherwise. The laugh is I'm a very experienced nurse and have no problems debating with these specialists, and I can get nowhere, this makes me worry how others in my situation manage. I keep my fingers crossed for you, not sure where you live but there is apparently an excellent vasculitis clinic in Addenbrooks, Cambridge, perhaps your GP could refer you there? Best Wishes, Runrig x

[mabs786 in reply to Runrig01]

Hi thankyou for your reply the support on here is amazing I'm so glad I found this site at last I don't like it's all in my head lol my rheumatologist discharged me as soon as they decided it wasn't arthritis and my gp wont refer me back even though I've asked I'm gona ask to be referred back to neurologist with a different consultant although can't see it happening it's so annoying how your life is put into these so called medical professionals and you don't get to have a say when nobody knows your body better than you. Don't get me wrong I'm aware there are plenty of excellent doctors and care workers out there I just wish there were more I live in Yorkshire so that would be a bit out of the way but thankyou for your thoughts. Xx

[Runrig01 in reply to mabs786]

It is worth speaking to those on the vasculitis forum, as there may be other excellent vasculitis clinic near you. I only know of this one as a fellow member on this forum suggested it as a possible route for myself. At the moment I'm keeping fingers crossed that neuro finally agrees next month

[mabs786 in reply to Runrig01]

Yes thankyou I will do good luck with your neuro hope you have better luck than I did

[mabs786]

Just wandering i know people have mentioned jaw pain when chewing but i experience temple pain when chewing more than jaw pain does anyone else?

[Runrig01]

No my temples burn constantly but get more severe with activity & hot weather. The jaw cramp pain is severe when chewing hard foods like cereal bars, crusty bread etc

[Hidden]

Hi Mabs786,

I am in a similar position to Runrig01 except I have no definitive diagnosis at all and have been told I have an auto immune inflamatory disease. I have the muscle and joint pain, headaches, fatigue, facial/ jaw pain and blurry vision etc.

I have been treated with prednisolone and am on my second immunosupressant trial.

I would echo runrigs advice. Keep pushing for answers. The problem with all these specialities is that they only look at the body part they are interested in and aren't good at looking at your symptoms as a whole.

I would check your GP has done blood tests such as ANCA, ANA, complement, CK etc and push for a referral to see another rheumy ( who is interested in more than rheumatoid arthritis ). The multi disciplinary vasculitis clinic is a good route to go down as they are experienced in connective tissue disease as well and are used to diagnosing vasculitis mimics. ( Birmingham may be your nearest clinic but have heard good things about a Prof Bruce in Manchester as well ).

I hope you manage to get a diagnosis and treatment soon.

Best wishes

Keyes

[mabs786]

Thankyou all for your support I just wish someone somewhere would just get to the bottom of it so I could at least start some sort of treatment and be able to at least resume to some sort of a normal life

[mabs786]

Does anyone suffer from stiff painfull neck as a symptom.

[Runrig01]

Stiff painful neck was one of my first symptoms, the spasms were so bad I managed to slip a disc in my neck about 4 weeks after pain started. I would rather go through childbirth again than the pain from slipped disc in neck. Also have 2 slipped discs in lower back, but pain from them was not a patch on neck pain. Will your GP consider trying regular anti inflammatories for the pain? Keep pushing for answers, no one cares about your health more than you do! Take care xx

[mabs786 in reply to Runrig01]

Wow really now I'm even more convinced I managed to get some dicloflex from my gp after ending up at A&E with sever headaches which tramadol wouldn't even shift but even they don't seem to work that we'll. Will keep pushing though xx

[Hidden]

Hi mags,

I have had a painful neck and thoracic spine on and off. At its worst it was very difficult to drive as I couldn't turn my head to the side. I too found that no painkillers were effective and had the best relief with hot water bottles strategically placed.

If your inflamatory markers are raised there is definitely something going on ( my CRP and ESR were raised as well ). Push for a further referral as you have had no answers so far.

[5lupins]

Hi Mabs, I'm sorry this is happening at your age and the struggle it has been I hope know everyone will advice you. this site has blown me away over the last few weeks, it is full of people struggling with overwhelming ill health and so many of us are battling to be heard. At my last rheumy visit after being told that my headaches were migraine and advised physio would cure fatigue, I very quietly (no energy ) said i'm seventy and I know my body and who I am. No reply!!! Take care

[mabs786 in reply to 5lupins]

Hi lupins so sorry to hear you are also going through this I was beginning think I was probably over reacting but after reading of others stories on hear I'm now reassured I'm not. I don't understand how theycan dismiss your symptoms when your age is a clear factor you really need to keep pushing and please don't be quite about it the worst thing about being diagnosed with migraines you are also left with the added side effects of the prescribed medication for them in my case topiramete which have not helped at all

[mabs786]

I know headache is one of the symptoms but was wondering if any one has the effect of a dazed or out of it feeling now and then that's without any medication or were your head just feels really heavy I told my gp this and he looked at me as if I was on something.

[Hidden]

What are your ESR and CRP Mussarat? There are other signs of inflammation other than these two. An ultrasound scan might be useful. I had a bullying GP who subjected me to months of headaches and anxiety that I could go blind, all because she was adamant I did not have GCA despite me telling her I had it. Her surgery then referred me to a hospital consultant who, despite my long term physical illness and mental distress, continued with further abuse! If I were you, I would change my GP or certainly take a tape recorder to consultations for later evidence for a justified claim for damages.

[mabs786 in reply to Hidden]

My last esr was 73 and cpr was 2.7. My gp says it can't be gca because my headaches are too severe as I've had a couple of severe attacks within 2 months even though the migraine medication isn't working I've ended up twice at A+E . He reckons it's just cfs causing the inflammation.

[Hidden]

If I were you, I would put in writing to your GP what your conerns are about your health and suggest you would like an explanation of your symptoms and treatment in writing. When you have this, you can take it to NHS England who will deal with your complaint.

[mabs786 in reply to Hidden]

My gp response to a explanation of my symptoms is I'm sorry I don't know I'm puzzled as to what is causing this therefore I cannot give you any treatment other than the Co codomol you are taking I'm tired of running between the gp and hospital and constantly fearful of another attack as neither can give me anything that helps the pain when it happens. With a sed of 73 and crp of 10+ you can imagine how crap I feel on a daily basis as it is wish I could afford to go private.

[OldnCreaky]

Hello Everyone, I am so glad to read your posts. I am a 52 year old nurse and have been told twice by my GP and once by a Rheumatologist that I am too young to have PMR; I can't walk very well due to hip, knee and back pain which I can only describe as wearing concrete cycling shorts. I have shoulder neck and elbow pain, and a recurrent temporal headache with blurred vision in my left eye. 4 weeks ago I started a viral type illness that eventually after 10 days put my temperature up to 39 degrees and my CRP up to 300 with joint inflammation and severe headache; I had a lumbar puncture. All of my infection screen was negative. My temp is now running between 37-37.9 degrees, and I am losing weight; in one week I have lost as much as I lost in a year with slimming world. I was sent home from hospital with ibuprofen. I had an appointment to see the Rheumatologist privately the day I was admitted to hospital because my GP would not listen to me. When I got to see him in the Hospital my joy turned to dismay; I am not convinced that his opinion would be different even if I paid for it. I am scared that I will have to go blind or have a stroke before anyone listens to me. I don't understand why it is such a battle to get the care outlined in the NICE guidelines: cks.nice.org.uk/polymyalgia...

[mabs786 in reply to OldnCreaky]

Hi old n creaky sorry to hear this yet again it is so frustrating every time I read about some one else suffering the same thing. I am so sick of these doctors and there ignorance towards patient's who dare to tell them what they think is wrong with them. I have all the symptoms of pmr but I'm no where near 60 only 41 there's no way it's just cfs said my gp. They fail to understand it's your body and nobody knows it better than you in fact they have a way of making you feel it's mostly in your head lol