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Get a second opinion or wait?

mamadeesixmamadeesix Posts: 83
edited 29. Mar 2018, 08:56 in Living with Arthritis archive
Recently I had a flare of sorts of joint pain I have had for a few years (toes, knees), sciatica type symptoms in one leg, and hip pain that started in Aug., and elbow pain since Jan. I went to a rheum. to check a possible auto immune issue, since I also have late onset Raynauds. The toes were already diagnosed with osteo (hallux rigidux) and also diagnosed Raynauds and rosacea.

He basically told me I didn't get enough sleep and that's why I was experiencing so much pain. (Even though I get more sleep now than a year ago before my hysterectomy) anyway.....He didn't seem interested in the raynauds. Didn't even look at my feet or knees or elbows. He poked my hip and ordered an ultrasound there.

They did find hip bursitis and a "knot" in my IT band. So I got a cortisone injection in my hip bursa and down my IT band. And he gave me a script for a week of 500 mg acetaminophen 3x/day, Meloxacam 7.5 1x/day and Gabupentin 600 mg at bedtime for this "flare" of what he didn't say. My joint pain, I guess. He also said to go to PT.

So now that I'm off the meds for a week, the pain is back but much improved. Although the PT makes my hip and left knee hurt a lot. He did do some bloodwork, which he said was normal.

The thing is....I didn't really like this guy all that much. He went of on the bunny trail of "insomnia" which I do not even agree with at all. He didn't seem to hear what I was telling him.
I was not even asked to take my shoes off??? In fairness, he did look at my fingers, which are my least painful joints.

I wanted originally to get a second opinion. I had an appointment set for April 5th with another rheum. But now......given my currently normal bloodwork and lessened pain, I am questioning that. Coming off all the drugs with less pain now.....what could they really see or tell me? I would like someone else's take on the whole situation, but really if you look at just the main facts.....l don't know what else they would do.

Should I go and tell them all I've been through with this other guy......or just wait until something new comes up and then go? It does take a couple months to get in, so I hate to cancel an appointment if there is some insight they can give me. I am just starting to feel like a crazy person chasing a diagnosis....which is not what I want.

I just really want to know what this all is, so I know how to deal with it the best way, if that makes sense?

Would you guys go to a second rheum, based on what the first one already did? Do you think they could tell anything after a week of RX anti-inflammatory pain meds? What would you do?

Comments

  • moderatormoderator Posts: 4,095 mod
    edited 30. Nov -1, 00:00
    Hi mamadeesix
    Welcome to the forum, what a lot you are going through I am so sorry pain is a hard thing to bare especially when you are not listened to, everyone on the forum has a story to tell about pain and their experience and what they did to combat it. People are very friendly and everyone is understanding and willing to help .
    Hope all goes well with you as you talk to people on the forum
    Christine
  • stickywicketstickywicket Posts: 25,871
    edited 30. Nov -1, 00:00
    This is difficult. You clearly and understandably want answers but it might be that you already have your answer. Usually rheumatologists get things right. Maybe you have OA not one of the autoimmune types of arthritis. Certainly anti-inflammatories and painkillers never did much for my RA. I really don't know what to suggest. Get a second opinion if you feel it might help but, in the not so wonderful world of arthritis things often remain blurred for quite some time.

    I'm guessing you're not from UK. (You'd never get to see one so quickly here.) I suggest, if you go to see another, do your research first and find a goodoone even if it means a longer wait.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • mamadeesixmamadeesix Posts: 83
    edited 30. Nov -1, 00:00
    Thanks, guys. I guess I was more upset by his manner....and the fact that he didn't really seem to listen to me or check much of anything out. Other than my hip and some blood work. I do have a follow up with his nurse prac. on the 1st) I will have my questions ready and maybe I will gain some understanding of what they are thinking then. So far, he has only said that I have hip bursitis. He didn't even say I had osteo arthritis. When I asked him why all this joint pain would present all at once, he just said sometimes these things happen.

    I also did see my hormone doc (doing hrt, post hysterectomy) and she does have a lot of insight into autoimmune stuff, since she has several herself. She deals with autoimmune issues and how hormones play into it. She increased my estrogen, since it was low-normal and had room to go up. She said probably the wisest thing I have heard so far........if it is an autoimmune issue, it will present itself eventually. Diagnosis is difficult and early on even more sketchy. So I will probably just wait.

    If the pain comes back as bad or new things crop up, I can always revisit the issue and see someone else.

    btw, here is the bloodwork the rheum did:

    ESR Bld Qn Westrgrn 4 mm/hr 0-30
    Rheumatoid fact Ser-aCnc <10 0-14
    CRP SerPl-mCnc <0.30 0.00-10.00
    cCP IgG Ser-aCnc <8.0 0.0-17.0
    HLA b27 neg
    ANA neg

    Not a comprehensive list, but enough for him to dismiss an autoimmune issue at this time.
  • dreamdaisydreamdaisy Posts: 31,562 ✭✭✭
    edited 30. Nov -1, 00:00
    It's difficult to know what to advise as none of us on here are doctors and every story is different.

    The trouble with the auto-immune types is that if you do not present with the classic symptoms in the classic places diagnosis can take some time (in my case nine years). Rheumatologically I have had times when I have felt dreadful but all is fine on the joints and bloods front and other times when I have felt fine but all hell has been breaking loose. I cannot for the life of me see why insomnia would cause joint pain, surely joint pain causes disturbed sleep, I know it does for me.

    There are around three hundred auto-immune inflammatory conditions, some can come and go (must be nice) but they usually roll up to stay. Sometimes it is easier to say what something isn't rather than what it is but obviously the meds have helped so there are grounds for concern. I would say see another doctor but don't expect him to ask all the relevant questions, you tell him what's what, show him what's what; as patients there are times when we have to be more assertive than we might find comfortable. Start keeping a diary of pain and tiredness levels, what hurts where, what aggravates and eases things, all of this information will give the specialist a better picture of how you are being affected. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Airwave!Airwave! Posts: 2,328
    edited 30. Nov -1, 00:00
    We often go through these periods of time with no help and it often feels lonely, the pain feeds a thinking frenzy making our situation worse, we question ourselves, the doctors, consultants and really all about us, we all go through these. All I can say is they don't last forever.

    Perhaps the adage of 'stay calm and carry on' should be tattooed on our eyelids!
  • WhaleRoadWhaleRoad Posts: 32
    edited 30. Nov -1, 00:00
    Get a second opinion.

    You obviously doubt this doctor's opinion. So even if the next doctor tells you the same thing, at least that might reassure you. You are perfectly entitled to a second opinion.

    I stuck with my first rheumatologist even though my instincts told me she was wrong, and even though she made me feel like crap. Eventually, scans proved her wrong but she still didn't get the diagnosis right and focused on the wrong thing. When she went on maternity leave I saw someone else who spotted the real problem straight away and sent me for the appropriate tests. That led to me getting the right diagnosis and treatment. I regret not trusting my instincts to begin with. I could have spared myself a lot of unnecessary prolonged suffering.

    Good luck.
  • WhaleRoadWhaleRoad Posts: 32
    edited 30. Nov -1, 00:00
    The "deleted word" above begins with C and rhymes with trap, but apparently it's too shocking for the grown adults who frequent this board!
  • mamadeesixmamadeesix Posts: 83
    edited 30. Nov -1, 00:00
    lol, whaleroad.

    I was thinking maybe deleted word was a term for making you feel invisible or something. :lol::lol::lol::lol:

    Thank you for your response. I think I might go. The only reason I wouldn't is because I am afraid of looking foolish. But that's just pride.

    I mean at the very least I will know if I like this doctor better and can choose between the two.

    I was somewhat vindicated when one of my husband's co-workers went to this same guy for his second visit. He's not a doctor guy at all and is usually like, whatever, just give me some pills to fix it. Even he said I see what she (me) means about this doctor. He didn't listen to what I was saying at all.....just got caught up in one thing and ran with that.
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