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View Full Version : GURRRR! I think that is me growling and venting!



Jenfrombill
08-19-2008, 12:17 PM
HI Everyone,

WOW! I don't even know what I am so pissed about (oops can I say that? If not, please let me know!) but man I am! I have seen 3, yes 3 orthropedic surgesons (sp? and too mad to look it up) for my shoulder- the reason is my CRP climbed to a 46. So they kept thinking infection but there is no infection. However, I have had 2 of the doctors look at ALL my blood work and come out and say my autoimmune disease (one specifially said Lupus) is making things difficult. The rapid jumps in my labs are due to the disease but keep them thinking infection. I have had a low-grade fever too. I know have a problem with my neck which requires an MRI and a trip to a neuro-surgeon. I am in tears.. people think I am nuts. I can only laugh when I tell them what is my next problem. Today I went to the dentist for what I thought was a gum infection, turns out it is inflammation of my gums. The dentist asked me if I have connective tissue disorder, I mentioned the Lupus testing he too said this is common in autoimmune disease. Why is every other doctor confirming it but one I need? I have an ortho who I love, she swears that I will not fall through the cracks. Her first words to me, after she reviewed my blood work and looked at my shoulder MRI and neck x-rays were " I am an orthropedic surgeon (sp?) but I also work with people with Lupus." Before I even said anything about it. She said "you're in the right place." I almost cried. She said your face is classic Lupus. I almost died, she gets it but others don't?

I just spoke with a co-worker, I have been out of work for 3 weeks because of the ongoing shoulder problems and she said "my boyfriend's mom is a nurse and she said Lupus is not life threatening and shouldn't interfere with you life. Some medication and you're fine" I wanted to crawl through the phone and say, "good to know: you see all the flipping doctors I have to see, you get blood taken every other day, you live in pain, see a dentist for gum infection that is actually just inflamation, have your hair fall out, have your CRP jump so high they were going to scope (surgery) my shoulder to see what was wrong, you get told your kidney's may be inflamed and you need more tests, suffer from night sweats, fevers, rashes, random joint pain, get an MRI on your neck for some mysterious problem (like my shoulder) and then tell me how it does not interfere with your life!!!!! Oh, and go to bed at 7 because your exhausted from doing nothing, and loose a best friend because you can't make it to your annual get-away because you have used too much time from work being sick or at appointments!!! Then tell me how fine it is!" Wooo, that felt really good. Sorry, I had to vent. Thank you! I didn't even know what I was going to write but man I needed to get something out. :-)

laurid8967
08-19-2008, 12:26 PM
Good for you, Jen..
WOW!! CRP is a 46!! That is high, girl...The highest mine has ever been (that I know of) is 23 or 26 (?) and they were flippin!! Ive never heard about a high CRP indicating infection, only inflammation...Is your white cell count high too? I wonder if your kidneys or heart is making the CRp so high...Im sure they know what theyre doing, but, yeah - how frstrating for you..
OMG - I want to go to your office and tell your co-worker some of the statistics of lupus....Not to mention, does she realize that the "medications" she is referring to are toxic? Its not like taking a stupid asprin...uuuughhhh
Jen, did they at least give you a steroid taper to get what ever is causing hte inflammation down? I would really ask for one, at least you will feel more comfortable, less pain, and less fatigue...
Im sending warm thoughts your way- and hope you feel better soon...
Love lauri

Jenfrombill
08-19-2008, 12:37 PM
my white blood count started to elevate slightly- then it dropped low, abnormally low. In a week my CRP went from 12 to 46! My MRI showed no fluid or signs of infection, but they were positive something was brewing based solely on my CRP. I had blood work done on Monday and was told, no word of a lie, if my CRP is higher I would be having surgery on Tuesday. They would call me Monday when the results came in and let me know. I was shocked. Luckily it was starting to go down. :-) I have an allergic reaction to anti-inflamatories and cortizone.... only me.

laurid8967
08-20-2008, 12:13 PM
Im glad its starting to go down - that is HIGH!! Low white cell count is a lupus indicator. Its so weird that it wouldnt be really high with an infection that causes your CRP to be that high....I hope it continues to go down...
Jen, what hosp are you at again? Is it in the South Shore? I cant remember (I cant remember my name lately)...
Lauri

Jenfrombill
08-20-2008, 02:20 PM
I am at Lahey in Burlington, I also was seen at MGH. I did not have an infection, but for some reason they just related my elevated CRP to an infection but then said it was due to inflamation. I guess I had a high ESR? I don't know. I give up. I have an MRI tomorrow for my neck; some problem they found while following the swelling from my shoulder. If they stop looking, we will be okay! :-)

How are you feeling? From what I remember reading, not too good. Is this how it is? I just find it so odd that this one disease can do so much. It can destroy everything... even friendships.

laurid8967
08-21-2008, 12:54 PM
Hey Jen -
Leahy is a great hospital...I hope they find out what the heck is going on with you....Yes, ESR (also referred to as sed rate) is another blood test that measures inflammation. Usually, if one is up, the other is too. So, basically your CRP and ESR are really high, thus you have some serious inflammation going on somewhere...The problem is (and has been for me as well) is that they cant determine WHERE the inflammation is.
I have had an elevated CRP for MONTHS now, and it has not gone down with prednisone...Thats why they are (supposedly) going to try me on Imuran as well, as I cant go off the prednione all together.
And, yes, I am in HORRIBLE shape right now...I am going to actually make a new post to see if anyone knows what the heck this could be...
Im really hoping you feel better, Jen, and they find out whats causing the swelling...
Love Lauri

Jenfrombill
08-21-2008, 01:55 PM
I will keep an eye out for your post. I hope you feel better soon. I love this site. I really never thought I would write so much but I can't help it. I follow people and how they are feeling, what they are going through and I just care about them. It helps me to stop spending every second thinking about me and a new ache or pain. I just don't have a lot of advise of information to share. I feel bad I am usually just venting. I wish I had more to offer to people.

laurid8967
08-21-2008, 03:28 PM
Just listening sometimes is so helpful...None of us have all the answers, you know? Jen, you should ask your doc about a prednisone taper...this would take the inflammation down - usuallly pretty fast, too.
Im sorry, I forget, are you already on pred? Or can you not take it? I cant remember - Im so out of it right now....Im still on the computer, because I dont have the strength to get up and get back in bed...
Lauri