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#278510 - 07/10/17 03:04 PM Advice before diagnosis
Eucid Offline
Registered Visitor

Registered: 07/07/17
Posts: 5
Hi All.

I'm not exactly from America, I just miss by a couple thousand miles, but I'm sure people can overlook that... lol

I have been seeing a physio on and off for about 18 months about my back, about 12 months ago I had an MRI but the didn't do the requested type - a STIR sequence MRI. So not inflammation was able to be found. It did show two bulging discs; L5 S1 and the one above or below, I can't remember. That was causing sciatica, but it's not now. My back then got better enough not to need physio, but still sore/aches.

About 3 months ago it flared up and after physio I was sent for another MRI about 1 month ago, I got the correct type too! My physio was certain of AS but it came back clear of inflammation, but the bulging worse. He is still going to speak to rheumatology though. He wasn't sure whether it's good not to be there, or bad not to know what it could be! lol

I have some symptoms - stiff lower back, especially after being still - sleep etc. I wake in the early hours when I turn over. I'm 32 and male. I get plantar fasciitis. Psoriasis on the scalp. Sore right shoulder. Eyes are slightly sensitive to light.

I don't know if I have the HLA-B27 gene, but I'm just after advice. Is there anything I should be pushing the doctors for? Or other symptoms to be mindful of? With no inflammation on the MRI, he doesn't think rheumatology will do much.

Or could it be something else?

Thanks

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#278515 - 07/10/17 05:07 PM Re: Advice before diagnosis [Re: Eucid]
SouthernMoss Offline
Registered Visitor

Registered: 03/12/13
Posts: 1710
Loc: MS
Welcome, Eucid. We have several members from various countries here, so you will fit right in.

You mention eye issues. Have you had your eyes checked? If not, I would suggest seeing an ophthalmologist (or whatever the equivalent is in your country.) There are a number of conditions that can cause light sensitivity. The one that is related to spondyloarthritis is uveitis, which can cause permanent damage if not addressed. Hopefully your light sensitivity is from something simple like dry eyes, but you really should get your eyes checked to be sure.

Are you currently taking any anti-inflammatory meds? If so, what are you taking and does it help any?

Does your stiffness improve once you get up and move around? Does your pain improve when you move around, or does it get worse?

You ask if it could be something else. It's certainly possible. But you have enough going on that you definitely need to see the rheumatologist.

Some people find it helpful to keep a pain diary. It doesn't have to be elaborate, just make notes of pain levels, activity levels, medication, etc. You might discover some patterns you weren't aware of, and the rheumatologist might find some of the information useful.
_________________________
Ginny - 56 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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#278516 - 07/10/17 05:22 PM Re: Advice before diagnosis [Re: Eucid]
Eucid Offline
Registered Visitor

Registered: 07/07/17
Posts: 5
I had my eyes checked earlier this year when I had an ocular migraine. I don't know how detailed they checked or if it was just a precaution as it could have been a detached retina. My general vision is excellent, just generally squinting or wearing sunglasses even if not sunny. I will look in to getting them checked properly.

With the stiffness in the morning, it's very painful, and yes, it does improve after getting up and moving around. Until recently I have been doing triathlons, I have taken a break due to getting bored, but the main time it hurt doing them is after the bike, being in one position for a long time.

Before the second MRI the physio said to try Ibuprofen, 400mg, 3-4 times a day. It worked really well, still sore, but probably around 25-33% of what it was at. He said to try them for a week, then stop and see if it gets worse... it did.

I'll start a pain diary, thanks for the suggestion! I'll also give the physio the rest of the week then chase him up to see what's happening.

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#278530 - 07/11/17 04:42 PM Re: Advice before diagnosis [Re: Eucid]
Cake Offline
Registered Visitor

Registered: 08/08/13
Posts: 130
Loc: Madison, Wisconsin, USA
Do you have a formal diagnosis of psoriasis, or is your scalp just itchy?

If you actually have psoriasis, it can be linked to inflammatory joint pain as well (psoriatic arthritis)

http://www.mayoclinic.org/diseases-conditions/psoriatic-arthritis/home/ovc-20233896

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#278532 - 07/11/17 04:51 PM Re: Advice before diagnosis [Re: Eucid]
Eucid Offline
Registered Visitor

Registered: 07/07/17
Posts: 5
I went to the doctor about it, and they gave me a steroid treatment, basically just a liquid to apply to my head. A product called Nizeral (UK name, not sure if there's a US equivalent? But it has 2% ketoconazole as the active ingredient) tends to keep it from being painful, itchy, and sometimes little cuts. I also had a cream too. But this was a about 7 years ago, when I was 25. I just presumed it ran in the family - dad and granddad both had it.

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#278537 - 07/12/17 05:57 AM Re: Advice before diagnosis [Re: Eucid]
Eucid Offline
Registered Visitor

Registered: 07/07/17
Posts: 5
Re-read this - just clarifying the steroid treatment and cream were about 7 years ago. The Nizeral shampoo controls it at the moment.

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#278623 - 07/24/17 04:10 AM Re: Advice before diagnosis [Re: Eucid]
Eucid Offline
Registered Visitor

Registered: 07/07/17
Posts: 5
Another question, is lichen planus a symptom? I had it for a couple years on my tongue before they removed it about two years ago. There were little bits on my cheek too, but it's the tongue they had a problem with as in a small number of cases it can turn cancerous.
Thanks

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#278627 - 07/24/17 05:56 PM Re: Advice before diagnosis [Re: Eucid]
SouthernMoss Offline
Registered Visitor

Registered: 03/12/13
Posts: 1710
Loc: MS
As far as I am aware, lichen planus is not a symptom of AS.

From what little I read on the AAD site, lichen planus is a bit of a mystery, although it is thought by some doctors to be an autoimmune disease.

Many people with an autoimmune disease acquire additional autoimmune diseases. There's even a syndrome called Multiple Autoimmune Syndrome where people are diagnosed with three or more autoimmune disorders.

Although AS is defined by many doctors as auto-inflammatory rather than autoimmune, some people with AS do have additional autoimmune disorders as well.
_________________________
Ginny - 56 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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