hi all,
i am new to the forum and hoping you all can help me with some questions. i was wondering who is the youngest person you have heard of suffering from PMR? i am 37, and have all the symptoms of PMR, except for the average age being over 50.
also, has anyone on the forum also been diagnosed with the giant cell artiritis? i have been having some symptoms of that too, and that is the really scary aspect of all this.
thank you in advance
Hi
I'm newly diagnosed at the ripe age of 47 but I have had symptoms for 6 or 7 years, and some going back to my university days after I had glandular fever at age 27.
I have some symptoms of GCA with blurred vision, floaters, pain (intense) in my eye, tender scalp (don't like my daughter pulling my grey hairs out!). I had a CT scan in 2003 which showed areas of vasculitis in my brain and MRIs have shown white areas too (was probable MS dx until recently).
If caught early enough (and others will correct me if I'm wrong) then steroid treatment will help the GCA. I'm hoping that the damage in my optic nerve in my left eye is not permanent but I have been untreated for so many years I doubt it.
Hoping you are keeping as well as you can.
Love Judi x
hi judi,
thanks for responding. what are/were the symptoms of your PMA? did it come and go? what joints were involved? were mornings particularly bad? have you begun treatment? what is your current status?
as for my symptoms they seem to come and go. last may, almost overnight, i awoke to pain in both knees, hips, shoulders, and lower back. very bad in the morning. it lasted about 1 month and tappered off. about 5 or 6 weeks ago these symptoms returned, with the addtion of severe neck pain, stiffness. they seem to be tappering off again before i could get in to see a rheumatologist or seek treatment.
as for my GCA symptoms i have been having blurred vision, mostly in my right eye, that comes and goes. i do not have headaches, but do get an occasional stabbing pain in the right temple/eye that last for a moment or two.
i have an upcoming apointment with a rheum. but dont know if blood test will show anything since i think my symptoms are subsiding. i guess we will see.
thanks again for the response.
regards,
steve
Hi Steve
I've had various symptoms for many years. I was positive for rheumatoid factor back in 2003 as I had RA symptoms for about 6 years.
Lots of things crept up on me: my arms were sore and weak 7-8 years ago. This was compounded by an accident I had in Feb 1999 which messed up my shoulder and gave me nerve damage in my right arm. I put the pain in my upper arm down to the damage done by the tourniquet in the operation I had to free the trapped nerve but it is probably the PMR, in hindsight. I had a neurological incident in November 2002 (stroke-like) which showed as vasculitis in the speech and motor areas. MRI showed white spots, though MS was not definite. I have had all sorts of MS symptoms over the last few years but the sight in my left eye has deteriorated over the last 5 years or so. I have had horrendous headaches and sharp stabbing pains in my eye. I can't bear anyone touching my head or upper arms and touch becomes pain. I get almost constant earache and my jaws hurt most of the time. Lately (since about mid 2004) my legs have got worse and this year the stiffness and pain have been so unbearable I resorted to seeing the GP three weeks ago. He put me on 20mg prednisolone for one week and dropped to 15mg since. Almost immediately the pains in my legs began easing and the horrendous stabbing in my eye has gone. Have had to up the dose to 20mg as I had a bad weekend in pain and I'm going to alternate 15/20 for few days to see how I go (not seeing GP until next week). My optician who is great, checked my eyes (waiting to see ophthalmologist) and she agreed that the problem with my eye is due to the optic nerve as my eye itself looks quite healthy. Looks as the GCA has caused damage to the optic nerve. Whether I will regain my sight properly is debateable.
I also take dosulepin for nerve pain, lodine for the RA, benzoflumethiazide for hypertension. To keep my stomach from reacting too badly I take rabeprazole and I have Bonviva to counter-act the prednisolone osteoporosis.
Sorry this is so long. It's taken me ages to find a site where I can "talk" to fellow-sufferers. Now I know I'm not going crazy and I have a disease with a name. At least now I can fight it and get out of this limboland I've been in for so long.
Apologies for getting emotional. I'm still new to diagnosis and reaction is setting in.
I hope your day is better than yesterday and tomorrow will be even better.
Judi
hey judi,
sorry to hear about all the problems you have had. im sure a diagnosis was made more difficult due to the other incidents you have gone through. dont worry about about writing too long, i am interested to hear others stories, especially someone as young as you. i hope your treatment goes well, and you continue to improve.
i know it can be depressing. mostly i just have joint and muscle pain and it gets me down from time to time. and i i have only been dealing with it for a short time. a month long episode in may, and currently another 4-6 week episode that seems to be easing up a bit now.
im still trying to get in to see a rheum. but they are booked up. i have a dr. friend who will pull strings for me, but the rheum he knows is on sabatical right now. so a real diagnosis for me might be a ways off yet.
hope things continue to improve.
regards,
steve
Thanks Steve. I'm feeling a little better today. Not so hot at work so the legs are "behaving". Have cancelled my appointment this afternoon so just trying to catch up with paperwork.
I wish here in the UK we could pick and choose our consultants like you can in the US. We are restricted by what our NHS Trust area has got. As I live in a rural town the next biggest city to us (Worcester) has only one neurologist that visits from the Birmingham area. We can be referred out of our areas but only if there is an arrangement in place and funding is available. As a rule we do not have individual medical insurance schemes so we can't be choosy! Same for the rheumatologist: we have to be referred by our GP and have to wait for an available one which could take months. GPs have to be pretty proactive in treating their patients here. I'm lucky that my GP is treating me for PMR off his own diagnosis.
Anyway I'd better get back to work as my lunch break was over a long time ago.
Take care and keep well.
Judi
I am almost diagnosed with PMR (meaning, I just need to get my MRI and bone scan results back to rule out anything else) and I just turned 45 in October. I've been dealing with these symptoms for at least 10 years.
Reading the replies in this thread it seems to me that they ought to be rethinking the "extremely rare under 50 years of age" thing.
P.S. I'm new, this is my first post, nice to meet you all!