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Joined: Jul 2014
Posts: 24
New_Member
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OP
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Joined: Jul 2014
Posts: 24 |
My daughter, 21, was dx'ed in June with SA. She is HLA B27 negative and there is no family history of AS (though my mother, who died young, had chronic lower back pain). Her CRP was 33 and sed rate was 23. X Ray was negative.
MRI impression was: "Slight to mild bilateral sacroiliac arthritis, with findings consistent with both chronic and a slight degree of ongoing arhritic change. The overall appearance is fairly symmetric." Her rheumatologist did a 20+ minute hands on examination initially, and spends at least 10 minutes each appointment doing a similar exam. He feels the HLA B27 negativity is not so important, the CRP is in line with SA, that the MRI results could only come about from SA, and that this is confirmed by his physical exam,
We like the current rheumatologist a great deal but his assessment was that she can't be treated at present owing to chronic vomiting due to severe gastroparesis. We decided to go for a second opinion on treatment. Second rheumy felt HLA B27 being negative was important, discounted MRI results, said the CRP could have been caused by a sinus or some other infection, and spent no more than two minutes examining her. He ordered a full body bone scan. We saw him today, and he said the scan showed no inflammation. He said whatever showed up on the MRI "had been healed" or it would have shown up on the bone scan. Thus, he concluded she does not have SA and instead has fibromyalgia.
My daughter has to walk with a cane. Her gait is very stiff. Her pain is in her lower back, hips, legs,and knees. She sometimes has heel pain and plantar fascitis and occasionally has rib pain and inflamed gums. She has no pain anywhere on her arms and shoulders, nor does she have any jaw pain.
I have looked everywhere to find information on the role of bone scans in dx'ing SA, including on this site. I can find nothing. We are much more confident in first rheumatologist than second, but I was interested in other opinions.
Thanks.
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Joined: Sep 2001
Posts: 6,162 Likes: 13
AS Czar
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AS Czar
Joined: Sep 2001
Posts: 6,162 Likes: 13 |
Hi, SAMum:
The very fact that Your daughter is young, has had long-term characteristic symptoms, even slightly elevated ESR, mild mri findings, and was mis-diagnosed with fibromyalgia, is absolutely indicative of Pre-AS.
The HLA B-27 test is only important if it is positive. If negative there are two more possibilities: 1) FALSE negative due to faulty test (serological versus real answers from Fc or ELISA) 2) Really negative.
If negative, the test does not rule out AS. If X-rays are negative it can mean that the damage cannot yet be discerned.
Nuclear bone scans can sometimes better image inflammation at tell-tale sites.
The most important treatment is NSD and she should begin this with a good cleansing diet or fast prior to starting the diet; a time during which You can study what to eliminate and what should replace these items.
All symptoms combined, there is no doubt about the diagnosis and if she is walking with a cane at her age, it is NOT MILD.
Best to You both, John
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Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
I flare terribly and then can be somewhat ok in between flares.
that is frustrating when trying to get dx'ed if they don't see you / test you during the flares.
too, my scans never showed a whole lot.
but after 12 years and 5 rheumatologists, i finally got dx'ed.
if i were you, i'd go back and work with that first rheumy.
not sure why she can't be treated with the GI issue?
biologics could be an option, couldn't they, they aren't oral?
sue
Spondyloarthropathy, HLAB27 negative Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.) LDN/zanaflex/flector patches over SI/ice vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K. chiro walk, bike no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Joined: Jul 2014
Posts: 24
New_Member
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OP
New_Member
Joined: Jul 2014
Posts: 24 |
Thanks Dragon and Sue. My daughter has pronounced rheumy#2 a quack. Luckily, we can joke about it. Everytime she complains about her arthritis, i correct her by saying you mean your fibrmyalgia. I finally found something last night that said bone scans for SA show inflammation only 46% of the time--in the words of the doctor who wrote the article worse than a coin flip.
One thing rheumy #2 did agree with rheumy #1 is that no oral medication is going to be effective as long as she has severe gastroparesis. She pretty regularly throws up medication after taking it and throws up a lot anyway (ten to 25 times a day) so medication that actually makes it to her stomach is getting disposed of as well. This also makes the no/low starch pretty moot. Diet for gastroparesis is low fat, low fiber so a lot of fruit and other food is out. There are week long stretches where all she can manage are saltines and ginger ale. Hard to discourage any source of food that can be kept down as at lest they provide calories.
We have found that gastroparesis can be a very intractable problem. The first GI specialist the regular GI sent her to said: "I feel like a neurologist when I deal with gastroparesis patients. I can diagnose them but there is nothing I can do to treat them." Way to go on the encouragement front. This doctor has been assigned to the same oblivion as rheumy #2. We have seen a neurologist who has suggested that the gastroparesis could be the result of another autoimmune disorder (a treatable one) and she has tested her. We are waiting on results.
In the meantime, I have a 21 year old whose health is too precarious and unpredictable for her to work or go to school. She has lost over ten percent of her body weight in three months and the downward trajectory continues. Walking is difficult even with a cane. I can't tell you how many times I have been stopped by concerned immigrant garage attendants (encountered at doctor's appointments) and CVS employees about her condition as her walking is so painful to watch. She has been getting relief from a heating pad. Now it looks like she's got a rash called erythema ab ignes from it that will reverse only if she stops the heating pad. One more source of relief gone. Such a mess!
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Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
I've gotten that rash from my heating pad. I thought it just cosmetic, so didn't care, but the dermatologist told me and gave me a pamphlet explaining how it can lead to skin cancer, so i've become more conscientious of it.
They have infrared heating pads that warm without causing the same sort of heating problem.
I also have a heated mattress pad for my bed that heats but not enough to cause that rash.
But for me, ice is even better than heat, so she might try ice if she hasn't already. Ice soothes the inflammation, dampens the pain, and for me, eases the muscle spasms.
As for the vomiting, someone else here, but not here too often, has the same problem, but they haven't figured out the cause. Her name is megan, she may answer if she sees this.
the reason i mentioned the biologics is because they are injectable or by IV.
So sorry to hear about your daughter. Its one thing to get these things when we're older, but when one is so young.....
sue
Spondyloarthropathy, HLAB27 negative Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.) LDN/zanaflex/flector patches over SI/ice vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K. chiro walk, bike no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Joined: Jul 2014
Posts: 24
New_Member
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OP
New_Member
Joined: Jul 2014
Posts: 24 |
Sue, Thanks--didn't realize there were heating pads out there that won't cause the rash. Will look into. Her first rheumy is reluctant to give her biologics, but we have failed to ask directly why. We were assuming it is because he is conservative about using them (one of the reasons we sought a second opinion). However, I now think it is possible he has reservations because with the gastroparesis he doesn't think your overall health is good enough to deal with biologics and their side effects. We will definitely ask at the next appointment.
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Joined: Sep 2004
Posts: 433 Likes: 1
Black_Belt_AS_Kicker
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Black_Belt_AS_Kicker
Joined: Sep 2004
Posts: 433 Likes: 1 |
If the 1st rheumatologist thinks she has spondylitis, but can't or won't treat her, and the 2nd rheumatologist thinks she does not have spondylitis (and so won't treat her) you need a 3rd opinion. I am sure that is not what you want to hear. I am sure it feels like she has seen enough doctors to last a life time. But, she needs to get her life back so she needs a definite diagnosis and effective treatment. Since she is HLA-b27 negative, and her x-rays were apparently normal, can you have her MRI reviewed by a third party? That might help to provide a clear(er) direction.
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Joined: Jul 2014
Posts: 24
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OP
New_Member
Joined: Jul 2014
Posts: 24 |
Stormy,
You are so right--the last thing I'd want to is drag her to yet another doctor. But your post reminded me that a friend of a friend offered to arrange a telephone consult with her rheumatologist brother in another city for a second opinion. FoF says her brother specializes in hard to dx rheumatological conditions. Apparently FoF is very aggressive and won't let things go (perhaps brother is afraid to not do whatever older sister asks?) so I was a bit reluctant. But your post is making me think this may be the next logical step.
Another thing that has me leaning against fibro is the trigger point issues. There is significant overlap between fibro trigger points and SA enthesitis points. I know they've officially done away with trigger points for fibro dx, but they are still widely used to clinch dx. You are supposed to have at least 11 of the 18 trigger points for fibro dx. The second rheumy who said fibro didn't check any of them. By my count she has only 4, possibly six--can't quite figure out fibro knee trigger point.
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Joined: Sep 2004
Posts: 433 Likes: 1
Black_Belt_AS_Kicker
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Black_Belt_AS_Kicker
Joined: Sep 2004
Posts: 433 Likes: 1 |
Unless the friend's rheumatologist brother can directly review all of her medical files and review and interpret the MRI images or arrange for an independent radiologist to review and interpret the images, I don't think a phone consultation will help much. She needs to see and be seen by a hands on rheumatologist who can look at both the clinical picture and the test results to make a clear accurate diagnosis. If the brother even agreed to do a phone consult, would you feel comfortable with his opinion regardless of what it is? If he agrees that she has spondylitis, that still leaves you with a diagnosis and (unless he is going to treat her) no access to treatment. That will not be particularly helpful. If he agrees with the second rheumatologist that she does not have spondylitis, will you take that opinion?
I know you don't want to take her to another doctor, but honestly, I don't think you have a choice if you want to help her resolve the problem. A 21 year old with the level of symptoms that she seems to be exhibiting needs definitive diagnosis and treatment. Focusing too much on how many tests she has had or how many doctors she has seen in the past is not going to help resolve the situation or help her move into her future. If the friend's brother is a hotshot rheumatologist who specializes in hard to diagnose conditions, it might be worth a trip to see him in person.
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Joined: Jul 2014
Posts: 24
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OP
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Stormy,
I think you may be right.
I've spent a couple of hours now tracking down information on bone scans and various aspects of her MRI report. The consensus appears to be that bone scans are of very limited value for dx of early SA and are negative in more than half the cases of radiographic confirmed AS. I could find absolutely no reference saying that bone scans were of diagnostic value for SA. So I am quite sure rheumy #2 is just plain wrong about the bone scan ruling out SA.
The more expanded version of her MRI report finds slight subchrondrical marrow edema on both the right and left sacroiliac joint. The edema pretty much says SA, best as I can tell. Backing this up, is that she also has mild subchondrial sclerosis on the iliac side of the right sacroliliac and slight sclerosis on the left side. Finally, the margins of both sacroiliac joints show minimal developing osteophytes.
This is consistent, as the report says with both ongoing and chronic bilateral sacroiliac arthritis. After this research I am even more shocked that rheumy #2 could say something like "the bone scan shows the damage on the MRI has healed." I am now completely rejecting the fibromyalgia theory.
But you are right; that leaves us with no clear treatment path, and we are really back to where we were before we saw rheumy #2--getting a second opinion on treatment.
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