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Adjusting to life with temporal arteritis
Polymyalgia Rheumatica (PMR) | Last Active: Jan 13 9:52am | Replies (217)Comment receiving replies
Hello, I am 43 and have recently become a regular at my doctors office and at the Neurologists office. This all started with a very sore neck. Then a strange twitching behind my ear about an hour later. My jaw felt sore like a stressed out muscle. Then my right cheek started hurting followed by my right temple. The next day I had pain in the back of my head in the crown area along with the other symptoms. Just to touch or to brush my hair or where my hat. My eyes had started having problems weeks before this. I noticed that my eyes would go blurry a lot. Much like looking through water. And I felt a lot of pressure in my eyes. Then my ears started having a lot of pressure. So far since the neck and temple thing started its been 4 weeks and it's only getting worse. I now find myself tired all the time and have a great lack of energy along with the coming and going of the above symptoms. I also discovered that if I rub or touch especially my right temple it will set everything off big time making for a really bad day. I had also notice a tired feeling in my arms and if I try to touch my back with either arm I get a sharp pain and just can't do it. This has never been a problem before so I don't know. At first I just thought I had over done it but is hasn't gotten any better. My wife is a nurse of 11 years and she thinks it is this Temporal Artritis. As in all our searching this is the only thing that my strange symptoms match nearly 100%. It has made sleeping an issue as well as the pain in my temples and jaw and head make laying on a pillow uncomfortable. I have had all kind of blood tests for all kind of ideas the doctors had. They all come back normal except that if you look at the graph you can clearly see some minor changes. I have had an MRI and CT scan to make sure it wasn't a tumor or something and last week I had an EEG. Next month I have a scheduled ultrasound on my arteries. Not sure if he is doing that to check for Temporal Artritis or if you can even really find any clues by way of ultrasound. But at this point my Neurologist says that it can't be Temporal Artritis because I am under 50. I am frustrated and just want to to feel good and get on with life.
As a side note. I am not a normal 43 year old as back in 2008 I was in a major motorcycle accident where the end result was that I lost my right leg, crushed my hip and have 28 screws and two plates holding it together and I lost my entire left back muscle as it was used for a muscle flap in my right leg that I had amputated a year later. I spent several month in the hospital and was only allowed home because my wife is a nurse. So, I am not typically as active as a normal 43 year old man. I sure would like to be though. So I don't know what to do at this point. I do t want to go blind and I sure would like to get a good night sleep. I found this topic just doing a Google search on this topic as I was looking for more info. I guess I though I would go to the community of people who have it and see if my symptoms truly do add up to what yall are or have experienced so that I can determine whether to continue to push my doctors to look into to this. Any ideas, advice or questions are fully welcomed! Thanks so much and many blessings to you all!
Replies to "Hello, I am 43 and have recently become a regular at my doctors office and at..."
Hello @amptrooper, I would like to add my welcome to Connect along with @lisalucier and other members. I have polymyalgia rheumatica (PMR) but it's currently in remission. My primary care doctor did ask me some questions after my second occurrence of PMR to find out if I had any pain or sensitivity in my scalp and other areas of the head. I asked him what would that mean and he said it's not uncommon to also develop/have Temporal Artritis along with PMR. I thought it was a little sensitive and he ran some tests and determined I didn't have it.
My thinking is along with that of @bt56, keep learning as much as you can about your health condition, keep asking questions and most important keep pushing the doctors for answers. You really are your best advocate. Another search tool I use that can be helpful is Google Scholar (https://scholar.google.com/). I'm not sure if you are familiar with it but if not give it a try.
Hope you have a very Happy Friday!
This is elderdiana. 3 years ago one night I suddenly went blind in one eye. Then 5 min. later my sight returned. About a month later my jaw ached when chewing. About a week later eye thing happened again. We were on vacation,so on returning home I called my doc. By that time the eye temporary blindness was happening every week or so. He said go to emergency room and they will know what to do. They did many testsover 2 days. Said Maybe I had TMJ in jaw and migrain headach in eye. Did not believe it could be temporal arteritis because I did not have headaches. My own doc said they should have done a biopsy to rule out temp. Arteritis. He insisted I go to another hosp for biopscy. It always says this disease does not start until we are 50. They also say headaches are present. At the first hosp. My sed rate was 47 which should have signaled possible temp. Arteritis, but they said that was because I was old. I was 78 at the time. So you are too young and I am too old. Thanks to my primary care doctor, I eventualky received the treatment I needed. We are all a bit different. I am still under treatment, take my meds, blood tests every 6 weeks.
and doing okay. Good luck with a diagnosis.
@amptrooper - You said you have had all types of blood work. I guess they have done a Sed Rate and CRP tests. My Sed Rate was 38 when they diagnosed me at Mayo Clinic. It does not have to be really high to have GCA. Also, had a biopsy the next day and it confirmed the diagnosis.
FYI Ashton kuscher (the actor) was diagnosed with GCA/Temporal Arteritis at age 44 ……..
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Hello, @amptrooper, and welcome to Connect. You certainly have endured a lot in your 43 years with your motorcycle accident and the physical results of that plus now the symptoms that are plaguing you and for which you are seeking answers, especially whether it may be possible you have temporal arteritis.
Your thought of going to the community of people who have temporal arteritis to get some insights from those who've experienced it on your symptoms and whether they might truly add up to this disease - and then allow you to advocate for yourself with your medical team, armed with more input - is a very appropriate one. They may also have some thoughts about the scheduled ultrasound on your arteries you have coming up and what can be determined from that.
I'd like to invite @masonc @dchandler7 @captainkenny to return to this discussion to offer their insights and support, and I'd like to bring @bt56 @elderdiana @johnbishop into this discussion for the same.
What symptom, of the various you mentioned, @amptrooper, is bothering you the very most currently? How are you managing it?