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Not Typical Symptoms??
When first diagnosed I tried to put the pieces of the puzzle together — family medical history; memories of my Dad and his swollen hands/how he walked/his fatigue; ten years of strange, undiagnosed symptoms for me (two visits to the ER with allergic reactions in my mouth/throat, fatigue so severe it put me on the sofa for 5 months, stiffness, heightened sensitivity to taste and smell, etc.).
My primary physician told me to forget it, that I had the disease and nothing was going to change it, that I was wasting my time, it was irrelevant. My first rheum simply said not related or shrugged his shoulders with no response.
What resulted was a frustration where I just did the best I could and rarely said anything. I went to appointments with the wish to get out as soon as I could. Eventually I made the decision for new physicians and started learning on my own.
Hope you and your family feel better soon!
I’m hoping we (patients via the RPF) can educate the medical profession about the *real* rheumatoid disease experience so patients won’t have to endure either dismissiveness or untreated symptoms as a result.
I do know that “rarely said anything” result that you mention. With all our other clinicians, we have great long-term relationships with open discussions where we can discuss anything. But with rheum: whatever I say is suspect as not really happening, not related to RA, not important… This is probably why thousands of people have written me about feeling bad during / after such appointments.
One thing I have in my favor is that I had a shitload of the so called “rare” symptoms for years before they finally tested me for RA (at my request). During that time they were treating me like I was a hypochondriac, and very condescending, but due to the low grade fevers they ended up saying it was a virus of unknown origin or something like that. So when I tested anti ccp positive I was like “in your face!!!” Now when they give me that line (which they still often do), I have to remind them that all of these same symptoms are what led me to request being tested for RA, therefore I must have some idea of what I’m talking about. Oh, and by the way, you’re welcome doctors, for me doing your job for you.
Ha! Lori, you got more of a diagnosis with the fever than I did. One trip to the ER, they kept asking my why I had a fever. After two hours of hearing that question, I asked them who was more qualified to diagnose the fever – them or me. They told me my physician should help with it. He didn’t.
Lori – you go girl !
Hi This is great; thanks; so now “we” need to learn to tailor treatments to individuals…………….Mary
Love the comparison. I’m tempted to forward this to my doctor!… maybe the next time she owes me off. Lol I may have to ask you to remove this comment before doing so though. Feel better!
Meant to say *pisses me off
hi kelly and everyone,
i love the,
“What resulted was a frustration where I just did the best I could and rarely said anything. I went to appointments with the wish to get out as soon as I could.”
i had no idea what was going on when i was younger. constant rushing fatigue, ankles swelling and tender, and on and on. At one point in the middle of a restaurant dinner with the young children, husband and in-laws(age 38) the burning twinging pain started in the chest. my husband dropped me off at the ER after dinner. (I waited quietly till everyone was done.) he took the kids and folks home. Happily I wasn’t having a heart attack . Unhappily the “clean” bill of wealth confirmed in mine and all other adults involved that i was a drama queen and hypochondriac.
To be honest the past year and a half since the diagnosis of RD have been a blessed relief. (now age 55).
Bursts of fatigue, no apologies. dizzy?, “great lets sit down for a few minutes”
My rheumy has been business like and matter of fact. my new internist found 6 years ago has been ok. the problem is me. I’m so afraid of sounding like a nut that i tend to not mention a problem.
i’m not sure if it is the work you have been doing or if i have scored some decent care and for the most part experienced friends. but i’m the one who needs the education. Education to not be afraid of full disclosure with a doctor.
I Hope your family gets well and that your home is done with flu season.
NVk
great point Nancy.I don’t think we have that kind of education & most of us have been intimidated & need it.
Great analogy.
And also a good reminder to mention everything to my rheumatologist. Sometimes I don’t bother, because I know it will not affect my diagnosis or treatment, but I think you make a great point that we should be sure that our doctors know the range of what we are experiencing, with lots of it outside of the classic symptoms.
kelly,
this web site has been a good education. i have told several people about it. i tell women, the RAwarrior,com is to the rheumatoid patient what the original, “what to expect when you are expecting” was to pregnant women.
An outline of what to keep in mind is so very useful.
nvk
I see a fellow dr, and therefore have seen about 7 attending dr.s in the last 3 years, and almost all have said I am atypical. I cannot stand that, and thankfully i am ccp positive, so the are forced to believe. Matter of fact, each visit the fellow dr introduces me and introduces me to the attend dr as “ccp positive”, as if she needs to justify me?? Back when I first had symptoms, I had a horrible swollen knee, followed by a frozen shoulder 3 days later. I sat in front of my computer trying to find the phrase to google what I was going through, and it was “migratory joint pain and swelling” The search results gave me Rheumatoid Arthritis and Lyme disease, at webmd, and other somewhat reputable sites, all mentioned the term “migratory”. 3 days later I went to my primary and he mentioned the possibility of both, forward a month later, and I got the ccp test. Now forward 2 years later, and I keep hearing from the rheum drs that migratory is “atypical” of RA. If this is so atypical, why is it a common descriptor on sites like mayoclinic etc? One dr said I’m on the young end of typical patients, yet I read the average onset age is 30-50 (I’m 40) WTF does this mean? I have read so much on this site, and others, and some research articles through a support group online, that sometimes during my Rheum appt, I really feel like I’m in the twilight zone with some of the things they say to me. I certainly have a very distinct set of symptoms/reactions that I have become very intimate with. I can sense a flare long before it becomes full blown, and I know exactly how it will progress.Both the symptoms and the progression of this disease has had a pattern. For example, I had symptoms in the beginning that I have never had since. When I try to explain/ask about this to my dr, they seem unconcerned. Possibly because they dont know what the heck to do with that information. Maybe someday they will. I’m just thankful that Enbrel is helping me.
My experience is that doctors will shove you into whatever box they have predetermined is your “size.”
My primary care doc looked at someone else’s diagnosis of me that I had fibromyalgia and refused to listen to me tell her that I didn’t think that was the whole story. My sed was elevated and ALL of my ER trips and complaints ended with something showing inflammation. Instead of looking for a classic case of some sort of serious arthritic autoimmune, she just swore up and down that I had an atypical presentation of fibro.
Since we are a military family, we moved (to Alaska, lol) and I got a new primary care doc. I told him my theory that I thought the dx was wrong. He asked my why I thought that way and actually LISTENED to the answer!!! Then he agreed with me! We started over and made sure to try everything in order so that the insurance wouldn’t kick anything back and in 9 short months (5 years, 9 months, really) I FINALLY had a referral to a rheumy. Crazy. The rheumy seemsfine. I think he is overly attached to blood tests, but he treats my symptoms too and takes my goals seriously, so I don’t complain. Also, there is another rheumy in the practice that is very into MSUS. I have to fly 350 miles 4 times a year to go see him, but at least the ones here seem a decent sort.
Spot on! Beautiful analogy. I tried the link to ‘cold prevention techniques’ and found that it didn’t work for me. Thank you for your inspiration and leadership.
The term more often used for “migratory” symptoms with RA is “palindromic.” (Which make less sense than migratory, but it is what my rheum uses, which has been used in this blog.) My RA, or rather RD (rheumatoid disease) I noticed first when I was in kindergarten, and has wandered through my body for seventy years before it was called palindromic. It manifested as sieges of near-catatonic fatigue, and pain and swelling in odd places (such as in my sternum and ribs) as well as usual – knees, feet, elbows and hands. I still don’t have any positive signs in blood tests, but current rheum believes my history, and has prescribed Cymbalta and chloroquin (Plaquenel), to my great relief.
Hi Kelly,
I was diagnosed almost two years ago with severe RA.
It has been a long, difficult journey!
On top of many visits to specialists (too many to name)
I recently experienced a bout of optic neuritis!
Have you ever heard of this condition in relation to RA?
Kelly – see this? It was published online 12.25.2013. Very interesting… international genetic study of almost 30,000 people with RA and findings –
http://www.nature.com/nature/journal/vaop/ncurrent/full/nature12873.html