Hi Everyone,
I have enjoyed and learned alot from your letters. I did post an introduction to myself but in the wrong section. Waddles very kindly responded and told me I should communicate in the RA forum. I was diagnosed with RA in July of 05 after having a set of diverse smyptoms and labs in 04. Nothing "fit" so no diagnosis was ever made. By 05 symptoms,labs and x-rays were pointing in the right direction so here I am. In addition to the RA I also have OA. FUN huh? Except for the joint flareups I am not in constant severe pain. I was started on Plaquenil two months ago but still have the minor aches/pains in hands and knees mostly. I have had both positive and negative experiences with the medical system as I am sure many of you have had. The Rheumatologist I am seeing is the most detailed of all the physicians I was sent to. He seems like a gentle caring person and so far as I can tell is giving me the correct treatment.
A few other facts about me, I do art work, love antique books and work within the medical system. Almost 62 years young as the saying goes, though the nights I work it feels more like 80. :)
Question. After my trip through the medical system in 04 I was left with Polycolonals in the urine, Kappa and Lambda to be specific. No Monoclonals thank goodness! I have tried to read about this but it is so complicated it is difficult to determine if I should be concerned. The Hematologist/Oncologist I was sent to said "Doesnt mean a thing." I think it is part of the inflammed immune system condition but would appreciate hearing from any of you who might have had a similar experience.
tmir
No answers to your question...just wanted to say hi and welcome!
Kelly
I don't have any answers for you either...just wanted to Welcome you. Hope to see more of you here.
tmir, i don't really have an answer for you either but you are the only one i've seen here who is seeing both an rd and hemotologist/oncologist. believe me, you will find yourself wondering what to do. apparently i have a very rare blood disorder (they call it ET) yet he the H/O has removed all my meds untill my ra treatment is decided on. i find that scarey, with all these stupid platelets running around.
are you working 3rd shift? I am and it can make things tougher than they need to be. my rd says to add at least 2 hours sleep because of the stress of upside down hours.
anyway, welcome here and everyone will support you and help you in anyway we can. they are a lot of really caring people
Hi tmir,
I also see a RA Doctor and an Oncologist.
Polyclonal are the good guys and Monclonals are the bad guys, when it comes to cancers. That is what they where checking to see if you might be showing signs off. They do play a roll in inflammation but not a big enough role to worry about. Glad to hear you are Monoclonal free...That is very good news for you...No cancerchecking you out.
Polyclonal antibodies (pAbs) offer solutions to several of these problems. Polyclonals are highly potent against multiple antigenic targets. They have the unique ability to target and kill a plurality of "evolving targets" linked with complex diseases. Also, of all drug classes, polyclonals have the highest probability of retaining activity in the event of antigen mutation. Finally, while monoclonals have almost no therapeutic activity against infectious agents, polyclonals can both neutralize toxins and direct immune responses to eliminate pathogens.
Moniclonals;
Preview: Monoclonal protein turns up in serum or urine of about 1% of patients aged 50 years or older and about 3% of those 70 or older. Such a protein may be a manifestation of a serious underlying condition, such as multiple myeloma, Waldenström's macroglobulinemia, or systemic amyloidosis. More often, however, it represents a monoclonal gammopathy of undetermined significance (MGUS). How do you know when the problem requires immediate attention, and what do you tell your patient? In this article, Dr Brigden presents criteria for diagnosis of multiple myeloma, smoldering myeloma, solitary plasmacytoma, and MGUS and discusses long-term management and risks associated with monoclonal protein.
Brigden ML. The search for meaning in monoclonal protein: is it multiple myeloma or monoclonal gammopathy of undetermined significance? Postgrad Med 1999;106(2):135-42 .
Hope this information helps you out...
I am almost 62 years young also and mostly feel like I am quite younger, untill I have an RA or OA day...Then I am just plain
Hope your day was a good day.
Toni
(waddles)
Hi Toni (Waddles),
Thanks for the information about Polyclonals. I did not know they served a useful purpose. I was sent to the H/O in 04 as my symptoms and labs did not fit the classic RA picture. You are right the Rheumatologist was making sure I did not have Multiple Myeloma. The whole experience was very traumatic. When the H/O ruled out CA he shot me out of his office like from a cannon. When I murmured "So we still don`t have a diagnosis" he told me if I wanted a diagnosis I could go to Mayos. I was initially shocked by that response as I thought no one went to Mayos unless they were in serious medical trouble. Since then I have learned that people do go to Mayos Clinic and are not necessarily at deaths door. The H/O was the last of my Dr appointments in 04 and I was left literally with no Dx and no follow up from any of the multiple Dr I had been sent to. Looking back on it now I suppose I should have been more aggressive but I think I was so relieved to know that I did not have bone cancer and so tired of the medical system that I just let "it" go. So the Osteoporosis went untreated for well over six months, the Rheumatologist I saw did diagnos that. When I had my six month check up with my primary in June of 05 I had to suggest that the RH Factor and Sed Rates be rechecked. That was when we found the RH Factor even higher than the previous years and strangely enough a Sed Rate that had gone back to normal. At that point he sent me back to the Rheumatologist and from there more tests and finally a diagnosis.
Oh in between all of this I had blood in my urine so could not start on the Fosamax until cleared by yet ANOTHER Dr ,the Urologist. That turned out to be Urethritis which a simple but expensive ( arn`t they all?) office procedure did fix, also found polyps in the Urethra. Now I still have blood in my urine but the Urologist was interested only if I was still having symptoms and the blood is of "no significance." A Cyctoscopy and Abdominal Ultrasound showed no abnormalities.
After that I was sent to see an eye Dr to be cleared to start Plaquenil. That was two months ago. Prior to 04 I went to a walk in clinic twice a year to get treatment for Bronchitis and that was the extent of my dealings as a patient within the medical system.
The summer of 04 I started having terrible attacks of pain in both wrists. That drove me to become established with a primary physician and from there the whole trip through the medical system began. I suppose for a lady who had just turned 60 I was very fortunate that up til then I had no major health issues. That is pretty much my whole medical history.
I think I am still trying to figure out how to deal with a condition that is not going to go away. I had a nasty flare up yesterday in my right knee and had to call off work. So pain, loss of salary and wondering what the future holds are all issues I am trying to deal with. I never feel quite well and wonder if that is the way things are going to be from now on.
tmir
Hi Maryd,
Yes I work third shift. It does have a heavy price attached. Sleep is broken up and never seems like it totally refreshes. If the body would cooperate I would gladly get those two extra hours. The day shifts are too hectic and I earn more $ on 11-7 so I keep on.
I am not familiar with the blood disorder you mentioned. I fortunately do not have to balance a Hematologist/Oncologist among all the other physicians I see. In 04 when he eliminated the possibility of Multiple Myeloma he discharged me from his care. I was heartily glad to go I can tell you! :)
Thank you for your kind words of support. The letters and responses from everyone in the formum have made a big difference. I do not think I realized until I joined that I was feeling isolated.
Tmir
Hi Kelly and Lovie,
Thank you both for your welcoming words. Joining the Arthritis forum has really helped. I did not realize that I was feeling a little alone trying to deal with a Dx of RA and OA. Hearing from you makes a big difference. Now there is someone I can talk to about this "stuff" who wont think I am just whining or being a complainer.
Thanks again,
tmir
That's what keeps us all coming back tmir. I think maybe that's one of the hardest part of dealing with the dx. We feel so alone and no one really understands what were going through. no matter how supportive your family is they really have no idea how this affects our daily life.
RA (In your case more than RA) is never far from our minds...no matter how we may appear. Everyone here understands that.
We're glad you're here.
You are more than welcome tmir.
I had a feeling you where feeling a little scared about what was showing up in your blood test and urine test...I would have been too...I know how traumatic it must have been for you...I am very happy that it came out negative for CA
Boy, your CA doctor was quite a twerp. I am glad you don't have to deal with him anymore. . Some doctors really need to have their knee's kick out from under them, just so they can feel the pain as we do and then maybe they actually can find a more kinder and gentler person inside of themselves.
I do believe you where shell shocked after all that you had to go through, I also know how hard it is to be so healthy for so many years and then Wham, you are hit with strange things going on in side your body, that it scares the crap out of you and when we get afraid the first thing we want to do is hide out. Been there myself.
As for the blood test changing all the time, that is the problem with RA or any auto-immune disease. They are so darn good at at playing games with you and not by the rules either, that we we never know what to expect.
I always thought that blood in the urine was a very bad sign but then after talking to all my doctors, it is only a bad sign if it shows up with certain other things in the blood or urine and that one drop of blood, in the toilet, can make it look like we are going to bleed to death.
Please make sure you always have your eyes tested when taking the Placquenil...It's a good medication but it does mess with your eyes over time.
As much as we may not feel like we are aging ( in our minds) and knowing that things happen to us just because of aging. We really need to keep up with our health better than we did when we where younger. You know the old saying " we are not spring chickens anymore".
The good thing I am seeing here, is that you now know what you have. Working with it may not be easy but it can be done. From all that I have read and experienced, you have to take it one day at a time. When tired and in pain, you need to let the non important things go, and only focus on what has to be done at the moment and then allow yourself some time to mend. RA is not going to go away. I wish for all of us that it would but the fact is, that's not going to happen anytime soon...so, we have to figure out a plan that works the best for us and leads us down the path of less emotional and physical pain. That's where your family and friends can be a great resource for you. Explain to them what happens with RA and ask them if they can help you when you are experiencing some bad times from the RA and when you feel more like yourself, offer to do something nice for them...It's all about giving and receiving and with the RA, sometimes we have to receive more than we give and that is OK.
You will need to work closely with you RA doctor and be totally up front with him/her. If something is not working, you say that to your doctor and if something is and they want to change things, you have the right to say NO, not right now. RA is a balancing act. We have to learn first what our negatives are, when it comes to this disease and then learn how to take those negatives and turn them into pluses. It all takes time.
Hope your work week is going well and the RA is just a fly on the wall and not a tiger caught by it's tail.
Take care tmir,
Toni
Hi Toni,
I agree with you about the CA Dr. It was a strange response but like I said once he eliminated any condition that was in his speciality out I went! Thank goodness says I!!!
As a medical worker the blood in the urine is worrisome to me. I have to trust that the Urologist knows his business and that as he says it is not important. I never did see any blood in the urine, it just shows up in the microscopic test. I certainly do feel better since he did the urethral dilation. The low grade UTI symptoms are gone since that procedure.
The Rheumatologist did see that I had an eye exam before I started Plaquenil. I have another check up four months from now. My insurance covers nothing by eye surgery so that is another bill impending. :(
Wouldnt you just love to get your hands on the person who coined the phrase "The Golden Years"? I think Bette Davis said "Getting older is not for whimps."
Yes I guess RA is going to factor in my life from now on. The trouble is I can not baby myself on working nights. No matter what I have to go in and do my duty. Days off can be spent resting and indulging a tired sore body. I did have to indulge last Sunday. I had a knee flare come out of nowhere and was unable to go to work that night. Wed when I had my Rheumatology appointment the knee was normal. I saw the nurse this time instead of the Dr. I left the office feeling kind of foolish like I had over reacted. She told me the popping, snapping noise in my ankles and knees are not indicative of worsening disease, that I am aware of them because I am "paying attention" to them.
I do not have anyone nearby that I can call on for help. That was what was so scary about that knee flare over last weekend. I was barely able to walk and afraid I was going to fall. The first thing I did was to hobble to the portable phone and carry it with me. I am thinking seriously of moving closer to family next year. Right now I am not in bad shape and able to do most anything I need to do. The disease is in the mild stage so says my Rheumatologist. What the future holds????? I get a little frightened when I read the stories of other peoples rapid RA disease progression. I just have to trust that my Rheumatologist will keep that from happening.
I have been prefectly honest with him and have told him he can count on me always telling him the truth. Saying no is going to be a challange for me but one I will meet. We are accustomed in the medical world to deferring to Drs. I have to remember that in this situation I am the customer, not the sales person who has to smile and agree.
I hope this weekend the RA stays at bay. There is a hurricane coming and I may be on duty long hours. I will have to stay overnight Sat and try to sleep on the floor in a crowded noisy building. Talk about stress!! :)
Will be back in touch the first of the week assuming power is not lost or is restored quickly.
Barbara
tmir
Glad to hear that the Urology report came back good too. I have had some major problem in the past with my Ureters and Bladder, so when you mention blood in the urine, my mind went back to when I was in a bad situation dealing with the urology part of my health problems...I can imagine how you must have felt.
Yeah, RA is not about keeping money in the bank. I often wonder how some people with this disease do it, when they are at or below the poverty level in this country. Cause I am sure that Medi-cade is not shoving out an over abundance of money to help them. I hope that they are getting some type of care and good care too.
My eyes are getting so bad but I don't know what to blame it on, age or the darn RA/Placquenil that I was on...Seems like it changes almost every week and If I remember correctly, I think I read something about Placquenil can still cause damage down the road, years later. God I hope not.
Then I guess we are not wimps cause you and I are still here and fighting, I guess that's a good thing...But I am with you. Want to go find that person and strangle them?
I know that there are times when we can not baby ourselves, no matter how much pain we are in, we still have to carry on but when we don't, THAT"S WHEN WE BABY OURSELVES and we do not have to answer up for it either.
Have they ever mentioned OA to you. The snapping and popping of the knee is what I hear ever so often and it is because of the OA.
You are learning. That is good...being in the medical field has a sorta mask effect...You see so much that sometimes you have to close your mind down as to what is going in order to get the job done. and if that means looking a little less caring, then you have to do that. Most of us in the non-medical field, do understand that, it is the ones who's total lack of empathy or consideration, are the ones we DO NOT CARE FOR and never will. You are caught between 2 worlds, not an easy place to be.
Glad that the RA is staying pretty much in the moderate zone, which is good, gives you time to make future plans..And then again, you may just be OK after they get your RA under control, so you may not have to move...
Well, I best close this down. since RA I have half a brain left and it takes me twice the time to think about what I am going to say in a post, which means I have now been logged in for the last 2 hours and I am just now closing this post. Good God, I can hardly wait till I am 70...Should be soooooooooooo much fun...
Take care Barbara, I will PM you tomorrow and give you my e-mail addy and we can yak in more depth. That is if you want to.
Toni