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Old 10-10-2010, 11:51 AM   #1
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Confused! Inflammatory or Not?

I have OA, fibro, several other health issues.... I recently had a bone scan that showed a lot of inflammation in my ankles, hands/wrists and shoulders bilaterally; all of which give me a lot of pain and stiffness. In light of the results another round of blood tests were done and my sed rate came back normal. I thought the sed rate showed inflammation. Very confused about this! I still have not heard back from other tests which has me concerned as they said if they were negative I would know by last week, and if positive they would run more tests on the blood. I don't understand how the bone scan can show so much inflammation yet the blood work not. Does anyone know why this is? I have sensitive skin, reddish face and chest as if I have been in the sun even though I have not. My hands and palms are red and always hot and often swollen, my right ankle swells often mainly on the front of my ankle, and my shoulders, particularly my right one hurts with lifting, raising my arms and I can touch the top of my rt shoulder and feel swelling as well as heat. I will be seeing the rheumy on 10/22 and hope to have my blood results in hand. I never test positive for inflammation even though for the past 5 years I have had increasing problems. My OA is full body, and I obviously don't want another arthritis dx, but I do want treatment and relief. Thanks for your input!
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Old 10-15-2010, 05:54 AM   #2
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Re: Confused! Inflammatory or Not?

Hi Mim Gregg,
First areyou close to Charlotte? That's where I am.... I have been having the same issues. I am 43 and have been having symptoms for 5 yrs (since I moved to NC) Any way I have had X-rays and bonescans showing mild OA hands, feet, ankles, spine mostly bilaterally. Dr says Fibro too. It is rare for someone under 45 to have this presentation of OA. I have never had positive blood tests either and I have very little swelling). I have started to wonder about the medications I have been taking and I did some medical research only to find that the acne rosacea med, the allergy/asthma meds the NSAIDs (obviously) and even the anti-depressant all show clinically significant decreases in one or more of the following serum levels: IL6, TNF~a as reflected in ESR and CRP. I have gone off of everything. Will talk to the Rhuemy Monday.
Any chance your medications maybe skewing blood work?

 
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Old 10-15-2010, 10:59 AM   #3
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Re: Confused! Inflammatory or Not?

The lab did say recently that the positive RA test may be skewed by my meds, but not the bone scan. Only the RA in the blood tests showed any positive evidence. I am about 3 hours away from you in a small town about 40 miles from Pawleys Island. I am 41 and have been dealing with all this since a bad fall and then physical attack in 2005 and 2007. My OA was confirmed in 2006 full body minus about a 4 inch stretch on my mid spine. The recent bone scan is why I was worried it had morphed into an inflammatory form of arthritis. My arthritis meds I am on now don't touch the flaring areas in my ankles, hands/wrists and shoulders. Those areas are where I have heat and/or swelling. I will see go over alll my test results with the rheumy next Friday and try to get a handle on what is going on in my joints and soft tissues, or at least I hope I will ! Many people on here that have RA or another inflammatory arthritis discuss seronegative arthritis or rather inflammatory arthritis without a positive blood test. From what I understand, it can take years for it to show in the blood work. I am going to request new xrays to have a baseline for now and am wondering now why they never did that when I was first diagnosed with arthritis. I think b/c of my age at the time that perhaps the rheumy and neuro just figured mine was at stage one and were not that concerned. Of course if they lived a few hours in this body they might reconsider a lot of their treatment! I have dealt with chronic pain for years, and it is one of the main reasons that I was granted disability at the state and federal level, so I am quite tolerant of pain. It is when the pain reallly flares that I get concerned as my body is obviously trying to send me a message for help through the meds that are used to block the signals and I am trying to listen. It would be great if my docs would take a listen too...lol! How long did the gel for the rosacea take to work or show improvement? I am seeing none, in fact it seems to be worse. I guess I will end up having a biopsy next month if there is no improvement to rule out what type of skin condition it is if this does not work. So many doctors, and so little time....lol. I hope you can get some answers from your rheumy on Monday. Please post on this thread to let me know what you learn! Thanks for responding to this thread, sometimes it can feel isolating to deal with many medical issues and not have many answers. Have a great weekend!
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Old 10-15-2010, 03:29 PM   #4
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Re: Confused! Inflammatory or Not?

Yes I will and let me know what you find as well.
I was taking an oral medicine for the rosacea called Oracea. It is a once daily low dose doxycycline. It worked well but now that I have gone off of it I have the same redness and bumps/tiny pimples as before.
If you had a positive RF and bonescan wouldn't that definitely be RA? Did the Dr ever explain how a fall and attack results in such a widespread case of OA at such a young age. I feel like my Dr thinks okay mild OA but they should be disturbed as to why we would get such widespread OA at such a young age. I was in a car accident when I was 18 and fractured 3 vertebrae and I don't even have OA there. I feel like maybe for both of us negative blood tests could cause the Initial OA diagnosis to actually be a misdiagnosed RA or PsA? Do they think your Rosacea might be Psorasis? Were you taking high doses of NSAIDs or other drugs when you were first diagnosed with OA?

 
Old 10-16-2010, 02:22 PM   #5
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Re: Confused! Inflammatory or Not?

I have been in 5 car wrecks, none my thought thank goodness, but it has done a job on my spine and neck. I have also had 3 knee surgeries and broken both wrists too many times to count. The ankles and hips have never been broken, but bones in my feet have. I think it is partially genetic and just the luck of the draw. I can't figure out what it is that I have, rosacea, lupus rash, or psoriasis. It is just annoying! I have been on nsaids and medicines since 1994 when I developed Graves thyroid disease, an autoimmune disease, and dealt with swelling and pain in my joints from that. I think that is what triggered my arthritis and that accompanied with a year long fight in high school with mono (Epstein Barre disease, again auto immune) I later developed fibromyalgia. I lump all my problems including the diabetes in the same group because sometimes it is hard to know what is causing what to have increased problems that day. I think we both have OA, but I do wonder if in addition to that perhaps the psa or ra or lupus. Hopefully the docs can figure it out asap!
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Old 10-16-2010, 05:57 PM   #6
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Re: Confused! Inflammatory or Not?

The NSAIDs can bring down the SED rate and RF for sure. Just read a study on it. If you already have Graves and had Epstein Barr isn't it far more likely that you could have another autoimmune? You are right about the OA if the XRays/scan are positive they are positive. If your scan came back with erosions how can they not call that inflammatory arthritis. I don't get it at all? I will say some prayers for you for an accurate diagnosis! Goodluck.

 
Old 10-17-2010, 05:47 PM   #7
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Re: Confused! Inflammatory or Not?

Thank you so much for prayers! I send them up for you, too . I am really interested in what the rheumy has to say about this on Friday. I just hope I don't get jerked around, there has been too much of that in this journey! I agree with you on the autoimmune issue. Another thing I will bring up again on Friday. Hope you have a good week!
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Old 10-18-2010, 07:09 AM   #8
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Re: Confused! Inflammatory or Not?

Hi,
I am a little out of my depth, but can suggest a couple of things which will not cause any problem even if inappropriate in you case.
Vitamin C @ > 1,500mg/ day helps my arthritic joints
SMS @ > 1,000mg/ day helps
Mg > 1000mg/ day with Ca> 600mg/day, as Mg, vital for energy use is stripped from bones in stressed conditions when Mg levels a little low (Ca etc. thrown out via kidneys, causing stones if Mg level too low)
Also needs a little vit D if you cannot get into sunlight (without sunscreen, or will not work)
Then Lecithin >10g/ day (I have it on home made muesli with milk or yogurt)
If you want more details, read “Nutritional Healing” by P.A. Balch

Last edited by moderator2; 10-19-2010 at 06:01 AM.

 
Old 10-18-2010, 02:04 PM   #9
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Re: Confused! Inflammatory or Not?

Quote:
Originally Posted by mimgregg View Post
Thank you so much for prayers! I send them up for you, too . I am really interested in what the rheumy has to say about this on Friday. I just hope I don't get jerked around, there has been too much of that in this journey! I agree with you on the autoimmune issue. Another thing I will bring up again on Friday. Hope you have a good week!
Went to rheumy. Not sure he liked my "research" He told me that I could have Fibro without the 11 tenderpoints or widespread muscle pain? Basically he is saying if you have pain and normal labs and no erosions you must have Fibro. Said should coincide with lab tests. Normal labs should = No Pain. He is humoring me I am sure but gave me an order for a repeat of all labs and to come in when I am in a lot of pain. Then come back in a month. Probably he is right but If he is going to give me an exclusionary diagnosis then I want to make sure it is really exclusionary. LMK what you get when you go

 
Old 10-18-2010, 11:53 PM   #10
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Re: Confused! Inflammatory or Not?

Well there is the other side: pain comes from nerves, u know about hitting your elbow, which is just squeezed the nerve bundle that is exposed when your elbow is bent. Now nerves are in bundles (like cables) and each has insulation round it to stop short-circuits.
Lecithin is the major component in this insulation, if you body strips this (happens under stress) you can get short circuits = pain. Lecithin to go back in needs vit C & E at least, I can check up on other stuff, but would expect that Mg is also required. Lecithin is made in our bodies when we are young, but I fear the “factories” seem to wear out, so we need supplements! Remember we are meant to earn our bread by the sweat of our brow, if we do farm work 12 hrs a day we would eat ~14 eggs a week & get enough lecithin, if we are not that energetic we will blow up like a balloon if we eat that much food!

 
Old 10-19-2010, 02:55 AM   #11
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Re: Confused! Inflammatory or Not?

Mg deficiency causes muscle cramps & pain. I forgot to mention that in the blood they very seldom pick up Mg deficiency, this is due to the fact that Mg is vital to the Krebs cycle (energy from glucose), so as soon as u have stress & even a slight Mg deficiency the body snatches Mg from the nearest source (usually softer bone ends), chucking away the Ca & PO4 which will lead to crumbling of the bones. Crumbling bone joints squeeze nerves causing pain. Dr’s then say u have Ca loss, which is true, but only due to Mg deficiency which cannot usually be picked up. Mg & Ca only go back in with ~ 60:40 ratio (on RDA basis) with vit C, B6 & D (can get from sunlight as long as no UV blocker used), along with Zinc. Then have a little coke (high PO4) periodically during the day.

 
Old 10-19-2010, 05:31 AM   #12
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Re: Confused! Inflammatory or Not?

You should remember that each person is different & may respond differently, in addition a lot of what is written in health area is garbage, stemming from taking a stand on one off mistakes that have happened, or some folks taking good products to extreme. I know that one of the essential amino acids has been banned as a supplements because one chap(a body builder) took 1000X the normal max (& used veterinary grade which is not always pure enough for us) and died.
Its much like the "New Age" religion there are parts which are good, but bits put there to, in my opinion, trap u, and divert u.

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Old 10-23-2010, 01:59 PM   #13
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Re: Confused! Inflammatory or Not?

Quote:
Originally Posted by mimgregg View Post
Thank you so much for prayers! I send them up for you, too . I am really interested in what the rheumy has to say about this on Friday. I just hope I don't get jerked around, there has been too much of that in this journey! I agree with you on the autoimmune issue. Another thing I will bring up again on Friday. Hope you have a good week!
Hey Mimgregg,
How did the appt go?

 
Old 10-24-2010, 06:49 PM   #14
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Re: Confused! Inflammatory or Not?

Hey Num, my visit Friday was somewhat discouraging. He looked at all my test results and said since I only had a positive ra but nothing else that it is "just" OA. I asked what else I could do, particularly with a bad flare and was told to keep doing what I am doing. When I go to my gp, I will ask for xrays for the areas that showed up inflammatory and find out if they will try another med for suspected rosacea or have a skin biopsy since the meds made no improvement. The rheumy did say I did not present with the psorias on my skin, but to get a biopsy if another med for my face does not help. I just feel frustrated because I feel something else is going on. Patience is a virtue that I am forever working on...lol! How are you doing?
John, good info I will use!
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Old 10-25-2010, 05:32 AM   #15
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Re: Confused! Inflammatory or Not?

Mim,
What does your doc say about the swelling? Have you had active swelling when you have gotten your blood taken? I am going to do all my blood again I woke up with swelling since I have gone off all meds and posted a picture on another post (similar?). The new criteria for RA puts less emphasis on serum levels. What about a 2nd opinion?

 
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