Diagnosis of arthritis

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Kimber
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Date Joined Jun 2005
Total Posts : 1852
   Posted 1/7/2006 9:47 AM (GMT -7)   
Hi folks,
I was diagnosed years ago with fibromyalgia and some form of arthritis. My lab work always come up negative, except for an elevated ANA. The doctor suspects I may have Lupus or RA but won't diagnosis me until something definate shows up in the lab work. He keeps repeating lab work every six months or so and this has been going on for years now. I've been accepting this "waiting game" but I look at my hands and I can tell they are starting to show signs of deformity. Has anyone experienced anything similiar? Should I consult another doctor maybe? Anyone ever gotten a diagnosis without lab work verification? Any help would be appreciated.

Hugs to all,
Kimber

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 1/7/2006 10:37 AM (GMT -7)   
Hi Kimber, welcome to the Arthritis Forum... Hhhhhmmm sounds like you need another rheumy! I have PA (Psoriatic Arthritis) and it doesn't show in my bloodwork. Had I not gone to a GOOD rheumy, I would still be undiagnosed. Do they have you on any meds? When I saw my rheumy, he did a physical examination first, plus x-rays and told me that I had PA before my bloodwork even came back. I had bloodwork done prior to see the rheumy and my regular doc said, "Well, you're negative for arthritis." So I thought I didn't have anything... When I finally requested to see a rheumy, is when I found out that sometimes the bloodwork is not as accurate as most doc's would like it to be. Good luck to you, I hope you find a new doc... please let us know what happens! - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


Jeanine
New Member


Date Joined Jun 2005
Total Posts : 8
   Posted 1/7/2006 10:51 AM (GMT -7)   
Hello Kimber!
I think I can help you with some advice.
I have been suffering from rheumatoid arthritis and osteo arthrosis for about 20 years. Finally, I managed to cure myself through a low acid-diet.
The rheumatic patient is at the origin of his own condition and he alone is able to remove its cause by a drastic change in his diet. For most rheumatic conditions are due to a kind of food poisoning by acids. It sounds rather revolutionary, in that way, that all the food that normally is advised as healthy is a real poison for rheumatic patients. And that is in fact the reason why doctors can’t find the cause of rheumatism. They never look for the cause in the food, and certainly not in the almost -so-called healthy food-. Rheumatism is most frequently due to an accumulation of acids. Acids dissolve the calcium in the body. The only way to cure rheumatism is to give your body the opportunity to rid itself of the accumulated acids without adding new ones. The worst acids are those from foods that actually taste sour, such as wine, cider, fruit juice, buttermilk, yogurt, curd cheese, Molkosan, vinegar, lemon, oranges, grapefruit, kiwi, other acid fruit, rhubarb and tomatoes. It is advisable to take daily a teaspoon of cod-liver oil, pure without additives. It is thought to suppress inflammation and it is restoring the oil and the cartilage of the joints.
After my recovery, I could not bear the thought that I knew how to cure rheumatic pains in a way, which was both natural and sound, and was doing anything with it. I wanted to help others as well. I have published the history of my recovery in a book.
 
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Good luck!
Jeanine from Belgium

Post Edited By Moderator (Ducky) : 1/7/2006 11:15:25 AM (GMT-7)


Kimber
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Date Joined Jun 2005
Total Posts : 1852
   Posted 1/7/2006 11:28 AM (GMT -7)   
Ducky- What is kind of odd to me is that he has never done any xrays. I have pain in most of my smaller joints, ankles, feet, wrists, fingers, elbows, knees and neck. He is treating me for fibro and arthritis with medication, but unfortunately I have through a long list to see what works. They either don't do anything or wreak havoc on my stomach. The best ones out of the bunch so far are zanaflex and mobic. They don't do much but take the edge off but at least that's something. I have a very high pain tolerance tho, its the fatigue that gets to me!

Jeannie- Thank you for the information on the diets. I'm already on a low acidic diet due to stomach issues but I will look into it anyway :) As for my hubby he has one of the more progressive versions of MS. We've tried different diets in the past and while they help his overall well being, I'm afraid he has too much nerve damage for any diet to help reverse it.

Lots of hugs,
Kimber

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 1/7/2006 1:23 PM (GMT -7)   
Hey Kimber, do you have Psoriasis? That is where all my pain is and I have Psoriatic Arthritis. I was on Mobic for a while, but it didn't do ANYTHING for me... Feldene was the only thing that took the edge off the pain to make it bearable. Like you, I have a high pain tolerance, so as long as I could somewhat function, I was happy with that. I hope you get in to see a different rheumy... At the very least, just for a second opinion! - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 1/7/2006 1:59 PM (GMT -7)   
Hi Ducky,
I've never been diagnosed with psoriasis. I do get rashes once in a while tho, but they always tell me its contact dermatitis or eczema. Thank you so much for helping me btw I really appreciate it :-)

Kimber

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 1/7/2006 5:25 PM (GMT -7)   
Where are your rashes and what do they look like?
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 1/7/2006 5:58 PM (GMT -7)   
I get them on my hands mostly in between the ring and pinky finger occassionally on face and umm rearend. They look like red, swollen bumpy patches of skin and it itches something fierce. It doesn't usually last very long a week or so at most then it vanishes.

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 1/7/2006 9:10 PM (GMT -7)   
Hi there Kimber,
This waiting game with docs and diagnoses is the WORST!
With rheumatics it's so flip-floppidy.  You can have all positive symptoms physically and the blood labs are negative and then some folks have all the positive blood work yet show minimal joint swelling/deformity but still have much much pain.
There are an array of small joint diseases.  A positive ANA is a good indicator of something at least. (well not good, who wants to have arthritis?...but at least on the trail to diagnosis/treatment).
The constant repeat is a pain, but it is a good baseline to see if something changes.  Sometimes it takes years for a positive RA bloodwork to show up...the same for Lupus.
Are you happy with the way you are being treated for your symptoms?  Do all NSAIDs make you sick?  Have you tried all the COX2's?  By chance...do you have some inflammatory bowel disease?
It's always good to have a second/3rd/4th opinion sometimes....different insight from docs sometimes "clicks" into a major epiphany!!
I would say definitely get some films or even a bone scan just to cover all bases.  Ultrasound also is a very good diagnostic tool for hand joints. 
Do you have an upcoming appt?
Take care
Sincerely,
Erin

Kimber
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Date Joined Jun 2005
Total Posts : 1852
   Posted 1/7/2006 9:56 PM (GMT -7)   
Hi Erin,
Thank you for taking the time to respond. I have symptoms of IBS, although I've never been formally diagnosed with it, and also stomach ulcers. That's probably the reason I'm having so much trouble tolerating the meds. Pain is a constant thing in my joints, but I also have episodes lasting a week or two where I feel extra horrible and more things appear then go away (crushing pain in the bones of my arms and legs, more fatigue, joints feel like they are on fire). I tell my rheumy these things, that i am getting worse but he rushes me out the door with a handful of new meds to try. I have a friend who recommended a rheumy she goes to, I'm going to call on Monday and make an appointment at least for my peace of mind if anything.

Kimber

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 1/7/2006 10:14 PM (GMT -7)   

good idea Kimber.  it sounds like what you are experiencing are flare ups of some sorts.  with me, i've active severe RA and CD and a cast of complications.  dealing with this the past 10 years.  i'm in constant chronic pain in all major joints everyday, and then i go through episodes of acute flares where the throbbing and pain is unbearable.  it lasts a few days or like now....i've been in a bad flare since the night of dec.25th; woke up in the middle of the night and holy cow! awful.

so yeah it's hard.  for your well being, see that other doc. 

all the nsaids and cox2's always made me bleed (rectal bleeding) or vomit & cause pain.  it's a tough process..especially when you feel like you're not being heard and looke at properly.  a good doc is there for you, just have to find em'.

the best to you,

erin


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 1/7/2006 10:24 PM (GMT -7)   
Erin,
My last episode was around christmas too. I'm sorry you are feeling so bad right now, and I hope you start to feel better here real soon. Thank you for taking the time to talk with me, and I'll be sure to let you know what the new rheumy says.

Lots of hugs,
Kimber

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 1/8/2006 3:26 AM (GMT -7)   
anytime!  there's strength in numbers.  if it's a help these are the meds i've tried to TRY to get a grip on the RA joint pain:
 
  • clebrex, mobic, vioxx ::: bled bled bled & stomach pains.  not too much help for RA.
  • all OTC and Rx NSAIDs ::: bled bled bled...but ADVIL did alleve much of the joint throbbing!  but can't take it due to CD.
  • pred :::yeah it works, but i'm sure you know...it's not a fun med to be on. i hate it.
  • Enbrel ::: very good for 6 months, was able to finish school on it. helped the best with the AS associated back pain.
  • Humira ::: since august & it has helped with the fatigue the best!  but my joints are still getting worse.
  • now on Humira every 4 days and pain management.
 
mind you though...i've had RA since 16 but never was treated for it till i was 22!  docs chose to ignore it...passed it off as it was something i would develop when  got older. had the bloodworks as positive and pain, but at 15...i was still able to GO GO GO. so i never complained. (had Lymes disease left untreated/undiagnosed from age 12 till 21. so it catapulted this whole autoimmune mess) so this is why the RA is soooo hard to get control of.  when you're a fresh diagnosis and start treatment early...it's usually VERY successful.  so keep on it!!!  i'm rooting for you!!
erin

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 1/8/2006 11:01 AM (GMT -7)   
Erin,
Thank you for posting your what works for you list. That was going to be my next question anyway since we seem to have similar reactions to meds tongue

Lots of hugs,
Kimber

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/8/2006 4:00 PM (GMT -7)   
Kimber, I usually post on the lupus forum, but often visit this forum and the chronic pain forum. I'm also in diagnosis limbo (for 2 years) and my case sounds similar to yours. I have a positive ana and sometimes my sed rate is elevated. My liver enzymes are slightly high once in a while but everything else comes back normal. I also have terrible joint pain and fatigue. I quit going to my first rheumy because he said I had fibro and wouldn't pay any attention to new symptoms I started developing such as rash, fevers, sun sensitivity and several other things. My current rhuemy says I probably have lupus and may be developing RA, but she says little benefit to officially labeling it and it can later cause problems with health and life insurance. She says the most important thing is to treat the symptoms. I understand that, but when you know you are sick it can be validating to get a diagnosis. I hope you can get into your friend's rheumy soon and hopefully you'll get some answers. Take care
Dx:  Suspected Lupus 2004, CFS 1991
Meds:  Plaquenil 400mg, Tramadol 100 mg 3x day, Amitriptyline 10mg, Neurontin 300mg


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 1/8/2006 6:04 PM (GMT -7)   
Hippimom,
Thank you so much for replying, you seem to understand exactly how I am feeling. It's not so much that I want a diagnosis, heavens know I really dont. It's just that when you feel yourself getting worse and can see visably that you are, and your doctor is ignoring what you are saying, that maybe it's time to alter course and see what someone new thinks. I'm so glad you posted, as it's nice to know that someone else is going through the same thing.

Lots of hugs,
Kimber

cc^
New Member


Date Joined Dec 2005
Total Posts : 18
   Posted 1/12/2006 10:58 AM (GMT -7)   
Hi Kimber:

For sure try a new rheumy, I have been to three, the newest one only once, but I really like her...she actually listens, and puts some stock in what her patients say, not going 110% 'by the book' only.

I have been through the 'pill pushing' type doctors and it's not fun. If one med does nothing or causes problems they just push a new one at you. Aspirin is the only thing I have found will take the edge off, so that is the only thing I have been taking for the past 7 months. I just started on HUMIRA and am hoping for positive results, from the pain, the fatigue and the progression of the disease. I have tried so many meds (was diagnosed in 1968) that I have often felt like a walking pharmacy ad tongue

I wish you all the best with the new rheumy..diagnosis is the first step on getting some control over a nasty disease. I changed both GP and rheumy last year and am very optimistic/pleased with both.

You take care and hang in there Kimber... we are all pulling for you
hugggggs,
=^.,.^= Cindy

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