Too Young to have PMR?

[33PMR]

I self Diagnosed GCA at 30. Labs indicated it however because of my age I was dismissed. Diagnosed instead with Fibromyalgia. I have every symptom of PMR. I have had blood clots and finally was reffered to Rheumatalogy.

I have been on prednisone on and off for degenerative disk disease which kept my symptoms at bay. I even had botox in my temperal muscles which helped until I had an allergic reaction and my face swelled for two months after.

Was anyone else diagnosed before the age of fifty and if so how old and how long did it take for a provider to diagnose and treat you?

[paddyfield]

Unfortunately if the consultant is of the mindset that rare means never, you will get fobbed off. No doubt other more knowledgeable than I will reply soon. Meanwhile is it possible to change our rheumy?

[33PMR in reply to paddyfield]

It is so hard to find a Rheymy in Utah. My daughter who is 9 has just been refered to a juvenile Rheum. for possible Rheumatoid Arthritis and there are none.

I am very concerned due to my life threatening clotting issue. How long did it take to get a accurate diagnosis and treatment?

[SusyTe]

I am in a PMR group on FB where someone asked what age we all were - plenty were under 50 and some as young as 30.

[33PMR in reply to SusyTe]

What group on facebook?

[SusyTe in reply to 33PMR]

I searched Polymyalgia Rheumatica on FB and joined it, more for moral support than anything else. This forum here is the best.

[PMRpro Ambassador]

One certain fact is that if you have raised inflammatory markers and pred combats the symptoms - it is NOT fibromyalgia!

Who made the fibro diagnosis? Labs can only tell you there is inflammation - they don't diagnose GCA specifically. But raised ESR/CRP are usually regarded as a rule-out for fibro.

There is a form of GCA called Takayashu's arteritis which occurs in younger patients. Because the original description of the disease was in Japanese many doctors think it occurs in Asians - it doesn't, it is found in all ethnic groups.

Have you seen a rheumatologist yet?

[33PMR in reply to PMRpro]

I was diagnosed with Fibro by a Neurologist. I was also tested for M.S.(neg) via CT or MRI since I have had so many I don't recall which was which. I do have nerve issues and maybe that's why they settled on a diagnosis of Fibro and I have chronic pain throughout most my body. It has been difficult figuring out what is nerve pain, muscle pain or bone pain. Fibro medications have not been effective except for Gabapentin which does help about 50%.

My Tests for Rheumatoid factor are always negative but the tests for GCA are spot on. My protein factor C is well into the 290% and I have every symptom of PMR but I am told I am too young by my providers.

I have seen a Rheumatologist and so far I am waiting on more blood tests. I would like a biopsy of the temporal artery.

I have been going to a pain clinic for 4 years and my symptoms are being treated individually but its not solving the real issue. I had about 7 spinal branch blocks, 4 bursitus injections, steroid injections in my heels, hips, shoulder and neck. I also had 3 spinal rhyziotomy's all of which help somewhat. Those were just i the last year and I regain the pain back very shortly to those areas.

I have had other immune relate illnesses like I.B.S, skin issues and eye problems that only get relief from steroid drops. I am always sick and have a very difficult time healing. I have eye issues like pressure from my enlarged temporal muscle and/or artery. I have double vision and blurry sight. The eye doctor told me to drink tonic water as the "quinine" should relax the muscle. I cant drink enough tonic water to reap the medicinal effects of Quinine. My Temple are and into my scalp area on both sides are enlarged (right more so) and very painful. I have a very unpleasing and Asymetrical face due to the enlargements.

I had to go on Long term disability from work because at my worst I was unable to write very legibly, fall asleep/black out at my desk no matter how much sleep I got and my alertness and memory was very diminished.

Maybe I don't know the correct questions to ask or what to push for. I seem to get pushed around from specialist to specialist who just shuffle me out treating me like a hypochondriac.

I was born very premature so being sick for most my life was what my parents expected and what was blamed. I am a very active person reguardless of my pain.I can't workout my upper body as much though due to weakness and pain. I just push through until I physically and mentally break down.

What were you're symptoms?

[PMRpro Ambassador in reply to 33PMR]

Fibro isn't really "nerve issues", whatever sort you mean - it is a problem with perception of pain rather than any mechanical problem with the nerves or depression type "nerve issues".

If by "protein factor C" you mean the C-reactive protein (CRP) then that isn't specific for GCA or anything else - it is a very general indicator of inflammation being present in the body so there are many things that it could be.

If you haven't seen a rheumatologist then perhaps you should - but it is impossible to say what it is you have - other than it very possibly is autoimmune judging by what you say. But it is very likely they are right when they say "not GCA".

And I'm afraid few of us here know much about the medical system in the USA so can't really help with suggestions there either.

[SusanEleven]

About 20 years ago I was told I was too young and didn't fit the profile for uterine cancer. Only 5 percent of cases were in my age group. Plus, I had a child and "they" said it was a disease of older women who hadn't had children. A string of gynecologists dismissed my symptoms for years. Finally, a kind nurse insisted to the doctor that I should have a biopsy. You can guess the rest. I did in fact have uterine cancer.

So while I am often reassured that I don't fit the profile for some diseases, I always remind myself that sometimes you are the exception and not the rule.

There are younger people with PMR. To dismiss based on age and not give greater weight to symptoms...makes my head spin.

I hope you are able to make some progress in getting a diagnosis.

[33PMR in reply to SusanEleven]

I am sorry you had to go through that I cannot imagine.

A nurse is who diagnosed my pulmonary embolisms after going to 4 hospitals in a week. I was down to 70% oxygen and would have died in my sleep if not diagnosed that day. Some people come into our lives at just the right time.

That is why I joined this group. I appreciate you responding and all the advice I can get.

Thank You!