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Newly Diagnosed. Input requested :)

Hi all!
I thought for sure I had RA. I got into a teaching hospital and met with the rheumatologist today. He did a history work up, and some physical examinations, and then said he believes me to be symptomatic for osteoarthritis. He will still test me for RF and ANA, but claimed that because I have PCOS I may "false positive" or "false negative" as that condition can affect blood work. He also said that they send the blood tests to be hand spun (whatever that means) for more accuracy. He took XRays of my hands, shoulders, hips/low back, and knees. I see him again on Nov. 15. What are your thoughts about this diagnosis and such? I didn't get any pain relief even though I stated that Alleve doesn't touch the pain.
Is he going to test me for osteoporosis? What else should I expect? He said he would support a sleep study (no thanks). He said he would support me going to a PT for training on how to workout. (I told him I had to quit because of the pain and residual pain days after working out). But no pain management drugs, not discussion yet on halting the progression, no discussion on prognosis, etc. 

Thanks!

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Comments

  • dilaurodilauro ConnecticutPosts: 118

    You are talking about many things here.  I think you need to break each one down and then do the follow ups

    Just to summarize what you are saying

    • At this point, you do not know if you have Rheumatoid Arthritis
    • X-rays were taken of various joints, but you do not have any results
    • Testing for osteoporosis?  Do you believe that is a possibility?
    • Sleep study - A VERY good idea for anyone, Sleep Apena can cause serious health problems.
    • You have not been to any Physical Therapy
    • You are not on any medications at this point
    • No discussion on the progression

    getnit2gether said:

     What are your thoughts about this diagnosis and such? I didn't get any pain relief even though I stated that Alleve doesn't touch the pain.

    Why did you say you havent gotten any pain relief.   You said you are not taking any medications.  Or are you saying that the Alleve you are taking has not helped?

    Osteoarthritis is a serious disease in which at this time there is no cure.  Many people can live with OA for years without major problems, for others, the ongoing progression and breakdown of the joints may require surgery.   Because of OA, I have had both of my shoulders totally replaced, both of my hips totally replaced and right now, I am looking at a total knee replacement.

    Many doctors, especially those trained in this area, can basically diagnose arthritis without having all the diagnostic tests.   There are many clinical signs that would support a form of arthritis.  One of the easiest ones is the overall warmth of the joint that is being affected.

    With RA, there are medications that you can take to help with all the discomfort.  There is no such thing for OA

    November 15th is quite a way off, were there no earlier appointments?   At least you had the diagnostic work done, so that the doctor can give you the results prior to the 11/15 appointment

    Ron DiLauro Veritas-Health Forums Manager
     I am not a medical professional. I comment on personal experiences 
    You can email me at: rdilauro@veritashealth.com  
  • Hi getinit2gether!
    Please click on the Welcome link below for more information on the forum.
    Welcome to Arthritis-Health and How to Start Using our System

    Until he gets the tests results back there is no way he can give you a definite diagnosis. Therefore he can't prescribe anything right now. You have a month to start researching as much as you can. Make notes of questions, concerns, what meds you could try and take these notes with you when you see him again. As far as PT, it would be worth a try.

    Take care and keep us posted.

    Sandra
    Arthritis-Health Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
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  • Well, I did say dr stated I have OA. 


    No, he didn't prescribe any meds for pain...though we did mention that I have tried Alleve etc and it doesn't hit the pain any more. I think it's true that he will not prescribe anything until he reviews the results of X-rays and blood work. 

    He did say I can see a PT but didn't prescribe one. 

    I don't believe I have sleep apnea, I lose sleep from pain-which wakes me up if bad enough. I do not snore, really. So, I'm going to skip the sleep study. 

    I guess I won't get any true input from the dr until after my next appointment. I was supposed to see again three weeks out but DH is out of town so couldn't make an appointment on 11/9....had to wait until 11/15. Yes, it is a long way out. 

    The dr is having my blood hand spun for better results-his words not mine. That's fine. Best to have a clear understanding of what is going on than lackluster.

    I had X-rays of: shoulders, hips, low back, knees, and hands. Yes, they all hurt along with feet. 

    It's not a surprise as my dad's mom had arthritis and was in a wheelchair his entire life. My grandma had osteoporosis, and my mom has some sort of arthritis. 

    Waiting is the hardest. Have already been researching for two months. I'm ready for solutions :)

  • Am reading the pathology report on the X-rays. They are fascinating. But, they do not point to OA except in one knee. Meantime, my pain is REAL and hurts. 

    Waiting for return to dr. is going to bite.

    Of note (and this is the radiologist not the dr) report:

    -There are possible small cysts adjacent to the anatomic neck bilaterally (right greater than left). This is nonspecific but may be seen with various forms of rotator cuff pathology.

    -On the external rotation views, small calcifications are seen adjacent to the greater tuberosity suggesting hydroxyapatite deposition (H ADD/calcific tendinitis

    -On the external rotation views, small calcifications are seen adjacent to the greater tuberosity suggesting hydroxyapatite deposition (H ADD/calcific tendinitis

    Impression:
    1. Negative bilateral hand radiographs.
    2. Possible bilateral rotator cuff calcific tendinitis. No significant arthropathy.
    3. Negative bilateral hip radiographs.
    4. Left knee osteoarthritis. Negative right knee radiographs.


    Er, okay. So my pain in shoulders and low back and heels are...??? Coming from where?



  • Waiting is the hardest part, all knowing that your body is telling you there is something wrong and in pain. But doctors want to see what is causing the pain that way he can move on with a plan. 
    I have gone through this too many times to count. But from you are saying you only have osteo in your knee but pain in a lot of places. You have time to get a list of questions for him and how to move forward.
    I know I can't answer your questions of where this is coming from. But I will be interested in the results of your test. So keep us posted.

    Sandra
    Arthritis-Health Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
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  • Indeed. From the Johns Hopkins site I found this nugget: Compared to conventional x-rays which only can show bony changes, MRI has the benefit of providing information about cartilage, periarticular structures (tendons), and can show ‘edema’ in the subchondral bone.  MRI is being investigated as a tool to assess the progression of OA (natural history) as researchers continue to try and develop therapies to treat OA.


    This is significant to ME because it helps me feel that a)my symptoms are valid, and b) the dr did already state that I have "early OA." I was looking for some help in understanding that assessment considering my feelings about the diagnosis yet no real view of it on Xray. AND, I'm guessing that more specific analysis of the structures would be seen via MRI. 

    And so, I wait for Nov 15 :) for follow up.

  • Thank you for posting the information above. We always hope that conversations like this will help other members too.
    Your blood work up will tell you a lot and I can understand why he wanted it hand spun, for a better reading.

    Sandra
    Arthritis-Health Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
  • Hi all. This board does seem to be sort of underused. I hope more people will come in.

    I had the follow up with the Rheumy. He gave me mild-moderate OA DX plus Fibromyalgia.I really don't like the fibro DX. However, he prescribed Cymbalta for the pain. I must say after about 9 days on the med, my general joint pain has minimized. 

    My knees still hurt getting up or sitting down (not while sitting or while standing). However, while the pain almost went away completely, it is now somewhat back....I'm just praying for weight loss at this point. I'm sure it'll help some.

    My biggest issue currently is my shoulder! Usually they will wake me up if I've had it up any length of time. Bringing it back down is like dragging a heavy sack of painful rocks. But, this one shoulder now has radiating pain in the front, top, and "side" of shoulder/top of arm, and has started to come down the "side" of arm to mid arm-sort of like muscle pain.

    Is this radiating pain normal in OA? I have searched the great Web but haven't had much luck finding the specific type of pain mentioned anywhere. I was hoping someone here could help.

  • dilaurodilauro ConnecticutPosts: 118
    edited November 2018

    Having both of my shoulders totally replaced because of Osteoarthritis,  I can say that what you are describing is probably in the first phase of arthritis degenerative joint problems.

    Have you had x-rays that can identify the extent of any arthritis in the shoulder joint?    Again, based on my personal experiences, I started having shoulder related problems in 2005.  Slowly it started radiating down my arm, where handshaking with someone would be very painful.    This continued for several years.  I had steroid injections which calmed the shoulder problem.  But after 6 injections, they would not do any more.  And by that time, the shoulder joint was just bone on bone, which required the surgery.

    Keep an eye on the progression.   For many people , it never goes beyond the first or second phase.

    :Here are the common stages of Osteoarthritis

    Stage 0  Classified as “normal”  The joint functions without any impairment or pain.  No treatment required
    Stage 1  Shows very minor bone spur growth.  Usually no experience any pain or discomfort.  Recommend you take supplements
    Stage 2  Considered a “mild” stage of the condition.  Bones are not rubbing or scraping one another. Start to experience pain, medications might be required, exercise recommended.
    Stage 3  Classified as “moderate” stage, Frequent pain while walking, sitting, etc, opioid medications probably required.
    Stage 4  Considered “severe.”  Great pain when moving the joints.  joint replacement surgery generally required.

    Ron DiLauro Veritas-Health Forums Manager
     I am not a medical professional. I comment on personal experiences 
    You can email me at: rdilauro@veritashealth.com  
  • Having dealt with Fibro for over 25 yrs., it's hard to tell what hurts from the Fibro or the arthritis. What were his indications that you have Fibro? 
    I have been lucky enough not to have had knee or shoulder problems. But I do have Osteo in the cervical part of my spine.
    Thank you for posting your results from your latest Rheumy visit and please let us know how you are doing.

    Sandra
    Arthritis-Health Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
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