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Frustrated and confused #282177
11/30/18 04:33 PM
11/30/18 04:33 PM
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BeaC Offline OP
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A few months ago I posted here regarding some symptoms and an upcoming rheumatologist visit. Since then I have had three rheumatologist’s visits and not much satisfaction. To make it as short as possible, I was referred by my PCP . I am female and a “young” senior. The rheumatologist ordered x-rays and an MRI which showed no classic AS symptoms. However, I do have iliopsoas bursitis in one hip. Labs were normal excrpt for mildly elevated alkaline phosphotase. I also have scoliosis, osteopenia, and some degenerative changes to my spine. I have also had DeQuervain’s syndrome in both wrists, and tennis elbow. The rheumatologist also diagnosed me with fibromyalgia. I originally went to my PCP because of low back and rib pain. He ordered HLA-b27 test and I am positive, which may not tell us much. In the past and again as recently as this week, when I have rib pain., which can be excruciating, I have had fever. I asked the rheumatologist why and he just said in my case he doesn’t know. Ack! What is he missing? Should I be concerned? I will see his PA next time and plan to have a long talk with her,

Re: Frustrated and confused [Re: BeaC] #282178
11/30/18 05:33 PM
11/30/18 05:33 PM
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Winston Offline
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He may not be missing anything. You've got a lot of different things going on which makes diagnosis more complicated, I think. The question you should be asking yourself is whether you believe your doctor is genuinely trying to make you feel better. Effective treatment is more important than diagnosis, (I don't care how my doctors label me so long as they're prescribing a therapy that keeps me functional), and finding the right therapy or combination of therapies is often a trial and error process. That said, talking with the PA about your concerns is certainly warranted.

Re: Frustrated and confused [Re: BeaC] #282179
11/30/18 05:39 PM
11/30/18 05:39 PM
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Hi BeaC,

I can appreciate the honesty when a doctor says they 'don't know why' (you have excruciating rib pain, fever, and low back pain), but that certainly can be frustrating for us. Sounds like you would like those questions answered.

It is possible that the radiologist isn't familiar with identifying spondylitis on MRI.

You could ask for a second opinion from a different rheumatologist.

Spondylitis can be difficult to diagnose and there are definately other conditions that can cause issues that we have. I haven't heard that people have fevers related to AS.

Diagnosis can be tricky. At our Spondylitis Los Angeles Education/Support Group, sometimes people say they are not Dx yet, or their doc now thinks they don't have spondylitis. either way, I let them know they are welcome to be part of the group. to me it doesn't matter what the official Dx is if we on a personal level have relatable overlapping issues.

Hope that helps,
Rich

information on MRI trainings for radiologists:
https://www.youtube.com/watch?v=-Gv9QixB83U

What AS looks like on an MRI:
https://www.spondylitis.org/Seminar...nd-spondyloarthritis-webinar-maksymowych

spondylitis member referral directory:
https://www.spondylitis.org/Rheumatologist-Directory

information on 'Could I have Spondylitis':
https://www.spondylitis.org/Could-I-Have-Spondylitis


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: Frustrated and confused [Re: BeaC] #282182
11/30/18 06:48 PM
11/30/18 06:48 PM
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BeaC Offline OP
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I thought I posted here but may have emailed something. Oops! Sorry if I accidentally pinged anyone.
I am not so much concerned about what my issues are called, but I am concerned about any joint damage that may occur if I don’t receive the proper treatment for the proper diagnoses. I do feel some better, but still have pain. I am currently taking gabapentin, sometimes Tramadol, and Aleve.
Had not thought about what the radiologist may or may not have seen. That is a good point.
I have been reading tons of stuff and have read there can sometimes be fever with spondylitis. Dont know if that applies to me at all, but I think it’s worth considering.
Thanks for the replies and the links. I’ll take a look.

Re: Frustrated and confused [Re: BeaC] #282183
11/30/18 06:51 PM
11/30/18 06:51 PM
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Winston Offline
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When I had my initial AS flare, I had low-grade fever, mostly at night. I haven't had fever since that first big flare.

Re: Frustrated and confused [Re: BeaC] #282184
11/30/18 06:55 PM
11/30/18 06:55 PM
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BeaC Offline OP
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Winston, we need a “like” button so I can “like” your post.

Re: Frustrated and confused [Re: BeaC] #282185
11/30/18 07:10 PM
11/30/18 07:10 PM
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achala Online
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In January this year I went to make cervical/thoracical spine mri with the clinic I am insured from work place. Showed hemangiona and small hernia between t5/t8 that’s all. On the base of that, as 1 Rheumatologist told me you don’t get biologic, but when noticed the name of radiologist he said this guy worked in our hospital but not as radiologist and he gave a name for of another one he worked with in the past. 10 months past I am on sulfasalazine but last week I went to take the mri with the recommended one. And bang! Inflammatory lesions in at least 6 vertebrae + bone marrow edema in some. Here you go! Either in 10 months my AS progressed in a rocket pace or the first radiologist had indeed no clue. Or as they say you need a proper mri gear to see anything.

Last edited by achala; 11/30/18 07:12 PM.

diagnosed with AS April 2018, starting with cervical pain/stiffness; Aug 2018 enthesitis/bursitis left Achilles
diagnosed with iridociclitis Nov 2017 (4 flares so far) - bilteral, DES
Eosinophilic Gastritis
Signs of inflammations/erosions on MRI`s for axial and Achilles/calcaneus + bursitis
Naproxen (occasionally), Sulfasalazine 3000 mg per day
Supplements: vit A&D, reishi mushrooms, fish oil/probiotic/ Mediterranean NSD
plenty of swimming
Re: Frustrated and confused [Re: Winston] #282187
11/30/18 10:19 PM
11/30/18 10:19 PM
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seymour Online
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Originally Posted by Winston
When I had my initial AS flare, I had low-grade fever, mostly at night. I haven't had fever since that first big flare.


Same here. That first big flare was a nightmare. It lasted for months, a year even, and maybe more. I had fever, anemia, all that jazz. Never had that again after we managed to bring that initial giant flare down.

I think I've read somewhere that for some AS'ers that first flare is the worst they'll ever encounter.

Re: Frustrated and confused [Re: BeaC] #282192
12/03/18 10:19 PM
12/03/18 10:19 PM
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Banana Online
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Are you worse in the morning? Are you stiff in the morning? Does exercise make you feel better?

You might want to keep a diary about when you have a temp, of course, that can make you seem like a crazy lady (like it did me).

The gene doesn't mean much. It is not a marker for the disease, many people have the gene and not the disease. If you are worse in the morning, make a morning appointment. Don't take the alieve for two days, make sure the dr see you in pain.

Anna


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: Frustrated and confused [Re: BeaC] #282193
12/04/18 03:18 AM
12/04/18 03:18 AM
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BeaC Offline OP
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Thanks for all the input.
I actually kept a record last week when I had a temp and plan to take it to my appointment. I know the gene may not mean much, but if you have other symptoms, I think it's worth considering.
It's a lot to think about and I want to go to my appointment fully prepared.


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