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You are all brave and courageous women. Thanks for sharing your stories. Joanne, my message is especially for you. Fight with every bone in your body to get a good rheumy who knows what the good ones now know–that early intervention with the biologics can save you a lifetime of problems. I am 78 and am being told now that younger RA patients will never have to go through the crippling process I have, because of new meds given early in the disease process. And BTW, I have always tested sero-negative as have about 40% of RA patients.
Lori,
Your story sounds very much like mine. In fact, until reading it, I was actually reluctant to post my story because while it’s a dramatic life change for me, it isn’t the death defying tragic event that others experience. I, too was active during a near-perfect summer vacation when I woke with pain in my pinky knuckle. Within a few days, it was symmetrical. My small bit of online research yielded the same thing — RA, RA, RA. However, my blood tests say another thing. In fact, they don’t say much of anything at all. Little to no RA factor. My doctor is reluctant to give me that label, but has ruled out pretty much everything else. Anyway, I agree that the achiness and fatigue are really a drag. I’m not the person I used to be and am still trying to figure out my “new normal.” Best wishes to you.
I hear many stories that start out like yours Aline. It seems common for RA to affect only a couple joints for a few years, and even the low blood markers seem to go with that. Treatment at that stage seems very effective.
Even in my own case, for almost 30 years, the RA I experienced was not a very big deal or easily diagnosible since it only affected certain joints and the symptoms would come and go.
If you have been diagnosed, please do feel welcome to post a story. Early diagnosis stories are helpful to people who are searching for answers.
Dear Brenda –
As a former member of your former discussion group (I was Kitkat) it was great to hear your on-line voice again! I was thinking about Laurie just the other day. I miss all of you guys!
Teresa- How wonderful to see this today – 6 months later. lol How are you? I think of you all often. I have just, once again, started back on Enbrel- yesterday, and this morning I woke up and my hands were not stiff and aching. I don’t know why I went to this post – but I did maybe to remind myself of things and what a delight to see your response…. you can email me- brendaready@aol.com anytime. Huggssss
Hello: I am sorry that all of you are experiencing so much pain. I am wondering whether any of you have ever had the following blood tests: The Serum Ferritin, a TIBC, a serum iron and the serum transferrin saturation percentage calculation. If your serum ferritin(SF) and your serum transferrin saturation percentage(TS%) are elevated you most likely have iron overload. Hemochromatosis also known as Iron Overload may make every disease worse in some way and it also increases the risk for getting another condition or disease amongst them is cirrhosis and cancer, diabetes, arthritis, heart disease, Alzheimer’s and age related macular degeneration. Check out this link: http://www.irondisorders.org for more information. The normal range for the serum ferritin is 50ng/Dl and the preferred TS% is between 25% and 35%, up to 45% is considered high normal. If both are elevated you have iron overload. The treatment is simple if you are not anemic, periodic blood withdrawals until the blood values are in the normal range. .
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