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Re: New here! and a Question
Nicole_B #277921 05/08/17 01:41 AM
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I see one in a couple of weeks -- I will update you guys. I am finding myself simultaneously nervous that she will say she can't see anything wrong and that she will say something is definitely wrong. I guess at this point I don't think what I'm experiencing seems normal, and PT definitely isn't showing much if any pain improvement.


Mid-20's. Undiagnosed upper and low back/SI pain (along with hips & ribs consistently, and neck, knees, heel/bottom of foot, ankles/achilles, and wrists periodically). Diclofenac 75mg 2x/day and Prilosec 40mg 1x/day. PCOS recently diagnosed.
Re: New here! and a Question
Nicole_B #277981 05/15/17 10:52 PM
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I saw the rheumatologist. She said my spine moved too well for it to be AS (I told her bending is a problem in the morning, and I wanted to say she should have seen me 2-3 months ago). She also said it should show up in inflammatory markers. (Also that AS is usually in men, though sometimes women, and usually ascends the spine, though it can descend).

She also said I was complaining of low back pain, but that AS ppl usually have pelvic and buttock pain (...but I have that?...), and that the MRI report did not show any of the things one would usually see in someone with AS. She did not look at the images themselves, and she also said the MRI was of the lumbar rather than pelvis area and she would expect changes in the pelvis area. She also mentioned that with AS ppl usually have really bad morning stiffness (I'm not sure how bad is bad enough here - I did tell her I'm stiff in the morning).

She did say I have bursitis in both hips. And she said it doesn't sound like fibromyalgia, lupus, or RA. She said it is probably not a disease but something "soft-tissue", and asked (multiple times) whether my PT has been attentive, etc. she basically seemed to think I need to keep at a stretching and strengthening regimen, and was trying to think if there was a better/different doctor she could send me to for that kind of thing. She never did think of one, and when I asked what "soft tissue" means she didn't end up giving me an answer. She focused more on what she/we could do to improve things for me, which I appreciated, but I've also been trying all these things for a long time. She mentioned workplace ergonomics (they've vastly improved - only thing left is a better chair, but even there I have one of the best in my office, and I've even made a sit/stand option for myself), she mentioned putting a pillow or blanket between my legs to help with hip pain when sleeping on my side. When she said that, I (and my husband) told her I had tried that a while ago, but that I can't sleep on my side anymore because of rib pain (and now it bothers my upper and lower back too, which I said). She kind of frowned at that, and said well we will see what the (blood) tests show. She mentioned thyroid as a possibility as well, but I've been tested for that twice. She did seem to remember when I said that the only thing that really seemed to help was the diclofenac (voltaren). She confirmed that.

I'm not sure if I'm glad, or frustrated and confused. I guess both. I specifically went to a doctor at a teaching hospital that knew about spondylitis and related. A lot of what she said for reasons it was not AS seemed either older-fashioned/out of date (based on my reading of the journal of rheumatology and other scholarly articles) or not true (e.g. the lack of buttock/pelvic pain). The only thing that made sense is that my spine moved well upon examination - which has been true for most doctors I've seen, but I notice definite differences at times myself. Can this still be true early on, when actually damage is not yet done, or is this a definite sign it is not spondyloarthropathy? (I know you guys aren't doctors so I'll take answers with a grain of salt).

I also mentioned the times I have been achey/feverish and my back has hurt worse (but I had no measurable temp), that I had written off as mild bugs), but later she asked me if I had fevers. I said no because I haven't had a full on fever, but now I wonder if she remembered (she repeated several questions).

I'm not really sure what to think. I keep being told to work on strengthening/stretching/PT, which on the one hand means doctors are agreeing and I should follow their advice. On the other hand, I've been doing that for a long time with little to no results. I'm not sure how else to tell them that other than to tell them I've been trying that, done PT, yes my PT is attentive and does stretches and strengthening and massage, etc. I'm not sure whether to take this and be glad and go back to thinking what I was months ago - that if I keep up exercises and stretches and chiropractic care it will maybe start to get better (never mind that I've been trying that for 2.5 years)?


Mid-20's. Undiagnosed upper and low back/SI pain (along with hips & ribs consistently, and neck, knees, heel/bottom of foot, ankles/achilles, and wrists periodically). Diclofenac 75mg 2x/day and Prilosec 40mg 1x/day. PCOS recently diagnosed.
Re: New here! and a Question
Nicole_B #277982 05/16/17 04:15 AM
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Nicole

I know that the process of getting a diagnosis is frustrating. It took me over forty years to get a dx. All too often the dx is not made until the damage is done. I agree that your Rheumy sounds a bit out of date. As soon as they mention that it is a man's disease, or that it can't be As because of lack of inflammatory markers I would look for another opinion. Many women do not start with lower back pain. Mine started in my shoulders and never bothered my lower back until I hit my fifties. You may not get a dx of AS as it requires damage for dx, but it should be apparent that something inflammatory is going on. Keeping up the stretching and PT is not a bad idea. Things might be worse for you now if you had not been doing the stretches. It is up to you to be your own advocate. Keep a journal and log your symptoms, then seek out another rheumy and see what they have to say. Best Wishes.


Age 61. AS dx'd at age 57
HLA-B27+,iritis/uveitis periodically since 1970, diabetic
Meds. naproxen and muscle relaxer(as needed)
Re: New here! and a Question
Nicole_B #277983 05/16/17 12:06 PM
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I would get a second opinion. If the doctor you saw is not on the Spondylitis Association's doctor list, I would choose a different doctor from that list. That way you are guaranteed to get someone who is very familiar with AS.

Re: New here! and a Question
Nicole_B #277984 05/16/17 01:10 PM
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The doctor I saw is on the SAA list -- I chose to go to that center because there are several from the SAA list there. Actually, most of the rheumatologists in my area (at least the ones on the SAA list) did their fellowship at that hospital, which was another reason I chose that center. That's part of what is confusing me. I had figured going in that I could trust this doctor's opinion, that if she said it was not SpA I could trust that and be relieved, and if she said it was SpA I could trust that and find out from her how to move forward. But her reasons did not make sense to me, and she did not give me any clear direction forward other than to return to the physiatrist/spinal pain management specialist and possibly find a better physical therapist (but I think my PT is fairly good?).

Also, the lab results came back (incredibly quickly) with a note from her -- CRP, ESR, and thyroid all normal (again). I'm afraid asking a second opinion will just get me labeled a hypochondriac.


Mid-20's. Undiagnosed upper and low back/SI pain (along with hips & ribs consistently, and neck, knees, heel/bottom of foot, ankles/achilles, and wrists periodically). Diclofenac 75mg 2x/day and Prilosec 40mg 1x/day. PCOS recently diagnosed.
Re: New here! and a Question
Nicole_B #277985 05/16/17 01:28 PM
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Hi Nicole,

I'm so sorry that you are having a frustrating diagnosis experience. While I understand your concerns about being "labeled a hypochondriac," I still would gently suggest you seek a second opinion. One of the best doctor's perspectives ever relayed to me was years ago from a cardiologist. He said to me, "I'm the expert in medicine for your condition, but you are the only one who is the expert in YOU. This will need to be a partnership between the two of us in order for our approaches to be effective."

Your gut is telling you that something is wrong. You know your body better than anyone and that is important. Don't give up if you aren't feeling well.

Sending you gentle hugs, resilience, and solidarity.


Female, early 30s. Dx AS July 2016, symptomatic 13 years.
Current meds: Cosentyx (150mg injections every 2 weeks) since April 2018. Tramadol (100mg every 6 hours) since January 2017. Celebrex (200 mg every 12 hours) since July 2017. Medical cannabis tincture/oil/vape/topicals.
Ineffective meds/ intolerance: Remicade (3 months). Cimzia (6 months). Enbrel (6 months). MTX w/ folic acid (2 months). Plaquenil (3 months). Prednisone (1 month).
Re: New here! and a Question
Nicole_B #277986 05/16/17 04:11 PM
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Another vote here for a second opinion.

It sounds like she is putting too much emphasis on diagnostic testing and not enough on clinical history.

It's likely that you truly don't have AS according to the diagnostic guidelines, which require a certain amount of SI joint damage be present. However, in my layperson's view, you have enough symptoms of the broader category of spondyloarthritis to warrant consideration of further treatment beyond PT and diclofenac.

My understanding of the list of rheumatologists on the SAA site is that they are patient-recommended, not SAA-recommended. The fact that AS/SpA patients have recommended them would indicate that they do have some experience with AS/SpA. But that doesn't mean that they are perfect, or that they will be a good fit for every AS/SpA patient.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: New here! and a Question
Nicole_B #277988 05/16/17 07:37 PM
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Hi Nicole,

I can relate to what you are experiencing. I started with back pain and fatigue in my late twenties and never was able to put things together. Now at 52 my back is really bad and the imaging is showing the signs of inflammation and damage consistent with AS. All my blood wok has been normal all along.

I wish I was more persistent when I was younger, maybe some of the damage could have been delayed or prevented.

Get the second opinion.

Jim

Re: New here! and a Question
Nicole_B #277995 05/17/17 02:42 PM
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Definitely get another opinion. I had all kind of symptoms of AS for years. Unfortunately they were insidious and never would a doctor have jumped to AS. a couple years ago when my low back tailbone sacrum area became constantly unbearably painful all the time especially sitting or riding in a car and worse when I rested or wasn't moving around and the severity of pain and onslaught of symptoms I went back to a rheumatologist who was wise enough to put it all together.I dont know what she means by pelvis pain. i have buttock pain and groin pain involving my hips now with all kind of other tendon pain in feet knees shoulder. It hasnt stopped but I keep trying to get a grip on it.Anyway for more than five years I was told I had fibromyalgia and so many other little things through the years I dealt with I now know was due o AS.took going through several doctors and then just timing with right doctor blood work happened to be elevated with positive hlb27 and the sense to realize my grandmother had a fused spine in the shape of a dam candy cane bless her soul. she had it most definately and severely. cannot believe I never thought it could be affecting me.Any way I would hope and pray you dont have this but I do know there is some relief in knowing wha you are dealing with.second opinion for sure.

Re: New here! and a Question
Nicole_B #278015 05/22/17 01:49 AM
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Thanks for the advice and encouragement everyone. I think my first step right now is probably to go back to the original spinal specialist I saw. He was the one who ordered the MRI and said it sounded inflammatory based on my symptoms (though he blamed it on the mildly bulging disc the MRI showed, which didn't seem to explain everything to me). He had said to come back in six weeks if it was still a problem after doing PT. I would be very wary if he starts suggesting injections or invasive procedures, but I'll see if he has other thoughts beyond PT. When he first saw the bulging disc on the report, he told me I was lucky to have this be the cause of the inflammation, which later made me wonder if he was actually thinking of a spondylitis-type thing. But who really knows. Depending on how that goes, I'll consider a second opinion from another rheumatologist.

I am fairly certain something more is going on than the answers I've gotten so far, but I also am trying to remember that answers may take a while. Maybe I'm just bad enough for it to be a problem but not bad enough for an answer to be obvious.


Mid-20's. Undiagnosed upper and low back/SI pain (along with hips & ribs consistently, and neck, knees, heel/bottom of foot, ankles/achilles, and wrists periodically). Diclofenac 75mg 2x/day and Prilosec 40mg 1x/day. PCOS recently diagnosed.
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