Doctors diagnoses differ with each other. Do I have Rheumatoid Arthitis or not??

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Lori120
Regular Member


Date Joined Apr 2008
Total Posts : 29
   Posted 11/5/2008 7:14 PM (GMT -7)   
I'll try to make this short. Been sick for a year. Lost almost 50lbs. since mid Feb.'08. BONE PAIN, muscle pain and spasms,heat sensation radiating from skin, pins & needles,etc. Just took nuclear whole body bone scan. Degenerative changes in ALL joints. My joint pain is on both sides of my body in same joint. I get red knuckles from time to time. Have no inflammation. Sed rate and CRP is normal. ANA and Anti-CCP is normal. I do have a positive RA Factor that went from 79.5 - 66 - 54- now 73.
 
I went to three Rheumys. First one said he doesn't know what I have but he thinks I have fibromyalgia and that I should get another opinion. Went to second rheumy who looked at my tests, listened to my complaints and diagnosed me with RA. I went to third rheumy who did all kinds of tests again and just told me today that I DO NOT have RA because I have a negative ANA, Anti-CCP and have no signs of inflammation, eventhough I have a positive
RA FACTOR.
 
What do think?

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 11/6/2008 5:14 AM (GMT -7)   
Hey Lori.. wow, sounds like you are getting quite the run around.. 1st off, you can have RA withing testing positive for anything! Has any of your rheumy's done X-Rays? Upon first reading your post, I was thinking RA with Fibro as well.. Did any of the docs put you on meds, or say what their course of action would be?
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR/Methotrexate
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots/HCTZ


Lori120
Regular Member


Date Joined Apr 2008
Total Posts : 29
   Posted 11/6/2008 8:19 AM (GMT -7)   
Hi Ducky,
1st rheumy wants me on anti depressent/anti anxiety pills. (okay..I do agree I need it but haven't decided which one b/c I need a med that's kinder to my liver since my enzymes are not so kind. Goes up and down). 2nd rheumy wants me on mxt. (don't like him b/c he doesn't deal with fibromyalgia at all). He looks like he should have retired 20yrs. ago. Wandering if he's up on things. 3rd rheumy says I don't need any meds and I'm fine. (FINE? I'm suffering). He said he has no idea why I'm having joint/bone or muscle pain or getting the pins & needles.

What's weird is that I was diagnosed several months ago as pre-diabetic. Now I'm testing my blood everyday b/c my sugar is going too low. ??? I also have high serum calcium for the past several years and high normal PTH (parathyroid). Couple months ago my parathyroid went high. Endo docs were convinced that I have a benign parathyroid gland and sent me for a scan. Negative for any adema. Then a couple weeks ago my Vit.D came out 8.5 (ref.range: 36-100). At the same time my PTH went down to normal. 33 ??? How could that happen? I'm now on 50,000 IU 1 time p/wk. for 6 weeks. Also taking 250mg.MSM everyday. My endo doc said to take calcium pills daily. Every other doc said no to that since my serum calcium will go up. I read somewhere online that having RA has something to do with calcium ...I think. Just trying to put the pieces together.

Could you recommend a good anti depressent/anti anxiety med?

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 11/6/2008 3:26 PM (GMT -7)   
Hey Lori.. you are an auto-immune mess! :) I mean that in a good way, they need to get everything under control.. I've had a lot of the same issues you have.. I think I would go to the 1st rheumy.. the other 2 don't sound very helpful at all.. the first one, you may be able to get the care you need from..

I'm not on any anti-depressants or anti-anxiety meds.. sorry, I'm just not that familiar with them.. but there are a few on here that are.. Or you may want to stop in on the A/P board or Depression board.. they are always very helpful!
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR/Methotrexate
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots/HCTZ


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 11/6/2008 4:16 PM (GMT -7)   
Go back to the rhuemy who said you had RA and ask him/her to take over your care. Then ask if you fibromyalgia as well (fibro by itself does not cause joint degeneration, RA by itself can but is not known for causing muscle pain-but almost everyone with one autoimmune disorder has another or has symptoms usually associated with another.)
Also, the doctors are seldom confident that they know exactly what is wrong with us and my rhuemy (after 12 years) still repeats the Lupus tests every so often when one of my symptoms baffles her. If your doc is willing to go -hmm tentitively RA so lets treat it that way-I would go with that.

Lori120
Regular Member


Date Joined Apr 2008
Total Posts : 29
   Posted 11/7/2008 11:22 AM (GMT -7)   
Sooo confused now. Don't know what rheumy to go to. I have a BIG problem!!!!!!! In 1996 I tested postitive (+PPD) for latent TB. It's not active but I went to a TB doc and he and my other doc said that the INH antibiotic used to kill the latent bug is very very toxic. He doesn't want me on it (9-12 months) because he thinks it's too dangerous for me to take it. It will up my liver enzymes(which I already have problems with-goes up & down) and that I'm too old. I'm 57. It also can cause neurological problems (which I already have) and can bring on Lupus which would go away after discontinuing the drug. But I'm already having AI stuff. SO....I cannot take any meds that alter my immune system. i.e. Pregnisone, Humera, Mxt. etc. This means that if I do have RA, I can't take meds to help it. I can't take NSAIDS b/c I have stomach tissue inflammations,ulcers and acid reflux. I already have intestinal metaplasia in my stomach.

It's very scary for me. I have been on prednisone for short periods due to asthma/bronchitis. I never knew prednisone whould activate the latent TB and never told my allergist. Actually, he should have asked before he put me on it. But, I'm glad that my TB was not activated.

I put myself on an anti-inflammatory diet. Took away a lot of the pain eventhough I still have pain. It's tolerable but still making me nuts. I'm afraid that since RA is systemic, I don't want it hitting anything else in my body. It seems that it might be hitting my nervous system. I remember awhile back, I had asthma and took my prednisone pack. All my pins & needles went away. I went off the meds and they came back.

Should I try a 4th rhuemy and see what he thinks I have? Gosh..what a mess.

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 11/7/2008 11:37 AM (GMT -7)   
I agree with SJ...go to the doctor who is willing to treat your symptoms...but I have to say as far as the antidepressants/anti-anxiety medications go, these should be prescribed by the right doctor for monitoring purposes.  Also, some of them are extremely habit forming and difficult to come off of for example the class of benzo's..I would be highly cautious with medications such as Klonopin, Zanax, etc (as these can be very addictive,) unless you have severe anxiety. I'm sorry I can't tell you which one to try but I can tell you which ones to shy away from unless it is a dire need!

profgary61
New Member


Date Joined Nov 2008
Total Posts : 8
   Posted 11/18/2008 9:09 AM (GMT -7)   
Lori have your Glands been affected?? RA does attack soft tissue as well and in some cases the Lungs!Yes I had similar problems with my RA dxd..........all my Rhumy would talk about was ....well you have no redness around your joints and then spent the next 35 mins talking about his career in politics.....Uggggg!!!!

Hoping you get a better Rhumy Lori!
God Bless
Gary


Lori120
Regular Member


Date Joined Apr 2008
Total Posts : 29
   Posted 11/18/2008 10:04 AM (GMT -7)   
confused  Uh..yep..From time to time my glands hurt or get just a bit enlarged. I've also been having a bit of a problem with my breathing. I do have asthma, but this seems to be a bit different. Can't really explain it.
 
Just took more tests from my rhuemy who said I don't have RA. After the tests came back, he said I have a false positive RA Factor. I do have to question this. He states there's no swelling, my GFR and Sed Rate are normal and there's no swelling. Negative Anti-CCP, etc...but positive RA Factor. My first RA Factor was 79.5, then 66, 54 and now up to 73. Doc said he has no idea why my joints/bones hurt. As for the redness that comes and goes, he told me to go to the dermatologist. But my redness is not "on" my skin but under it. He wants to see me back in the beginning of Jan-09.
 
Also, there are new findings in my labs and he said not to worry. My ferriton was 16 a couple months ago and then went down to 13. Now it's 11. (ref.range: 10-232).
My RBC (LOW) is 3.87 (ref.range:4.20-5.40),
HCT is (LOW) 35.3 (ref.range: 37.00-47.00),
MID% (HIGH) 6.3,
Alk Phos (HIGH) 125 (ref.range:34-104),
Globulin (LOW) 1.6 (ref.range: 2.3-3.5),
A/G Ratio (HIGH) 2.8 (ref.range: 1.2-2.2),
Vit.D -8.5 LOW! (ref.range:36-232)
High Calcium Serum 
 
I've had the high Calcium Serum for a long time but all the others are new. Had the same tests taken 3wks.prior and they were normal. Why shoud it change so much in just 3 weeks?
 
 
 

profgary61
New Member


Date Joined Nov 2008
Total Posts : 8
   Posted 11/20/2008 9:49 AM (GMT -7)   
Lori as well as having RA 's (it's been now accepted That swelling and or Redness is Not alway a gage or sign to RA) You might think about FM and CFS .....Im thinking and leaning more that way with even my RA factor that its possible to have all three and more going on.

I've read that to really understand immune diseases like RA they are multi faceted symptoms and diseases so when you think of it this is what makes dxd for a lot of doc to really get a handle on what's going on.

Lori are you getting the blood test done every 3 weeks? wow your a trooper I have a fainting problem if they dont get my vein right away and keep jabbing me. Your findings in the is definitely showing sign something is changing and rapidly if your test run every three weeks. I would find another opinion Lori.

Hang in there Lori I feel your pain too.

Gary
God Bless
Gary


Lori120
Regular Member


Date Joined Apr 2008
Total Posts : 29
   Posted 11/20/2008 5:54 PM (GMT -7)   
Hi Gary,
 
I have different docs, Endo doc, rhuemy, neruologist, gastro doc,cardiologist, etc that keep giving me tests. Lately I've been taking labs every 2 weeks. My veins are bad and yes...I have to be jabbed a lot. My pain tolerance used to be much higher. Now my tolerance is low. But it's a good thing that my labs had been taken within a couple weeks apart because I'm seeing the changes happening fast with each test. I just got a new result that I hadn't mentioned because at the time it was fine. My ALT (liver enzyme) came back High. smhair   I just started crying. If I waited a couple or more months between blood tests, then I wouldn't know what's going on. My AST is High normal. ???
 
I had my house temp set at 67 today because I was so hot and felt like I was sweating. But I wasn't. I've been going from FREEZING where it actually hurts to feeling like I just want to jump in a cold shower. The change in my body temp. feeling changes in a second. The doctors just don't understand this...so nothing is done for it.
 
I decided to go for another opinion but unfortunately, there aren't many rheumys out there and they make you wait 2-3months for an appointment. The way I feel I sometimes wonder if I'll make it that long.
 
My nuclear whole body scan showed degeneration in all my joints. I guess that means arthritis. ??
 
Lori

Buckeyeinfl
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 11/21/2008 6:04 PM (GMT -7)   
Lori,
I would also suggest an MRI to rule out anything mechanical with your joints. This is the most sensitive test and could help to really pinpoint anything that might be going on with your bones. The bone scan is great, but because you mentioned Prednisone, I'd also ask a do to MRI hips or knees to make sure there's nothing else going on. I hope you feel better soon!
20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
VSL #3 DS
21 yo Daughter diagnosed with right shoulder, bilateral wrist, 
bilateral elbow, bilateral knee, and bilateral ankle avascular necrosis
(aka Osteonecrosis) as a result of Prednisone use
 


bobbiejo
New Member


Date Joined Nov 2008
Total Posts : 4
   Posted 11/22/2008 9:03 PM (GMT -7)   
hi you need for them to see if you blood is not low. went my blood low it hurt in me joint. prednisone is very bad i was on it for ten year broken hip. my doctor said no prednisone .he give me pain Zanax,it help me .but you have to be care with doctor you pick .some give drug to give to you can hurt at the some time god bless you i pray for lori
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