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Re: Newly diagnosed looking for opinions/feedback [Re: miaoli] #279278
10/13/17 06:08 PM
10/13/17 06:08 PM
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miaoli Offline OP
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Hi Nicole B,

No worries if you don't have a diagnosis I am welcoming any and all feedback. As far as AS being autoimmune or auto inflammatory from what I've read no one's really positive, but it may be both (I think one article I read said it is most likely both). That distinction really doesn't matter too much when you feel like crap though! It does matter to me however because it tells me whether or not the rheumy's suggestion is a possibility or not.

Interesting that you also have dizziness issues though it sounds a little different than mine. Like I said I've never had "true" vertigo or nystagmus, however my off-balance feeling is constant and by far the worst of my symptoms (it's terrible not being able to stand still comfortably!). As far as your ear fullness wax is exactly what I thought mine was when it started over 2 years ago (before the dizziness or any pain, but after an ear infection). Surprisingly every time my ear is looked at it is completely clear (I thought I had impacted ear wax).

Good luck finding your answers!

General update for everyone, I did end up getting a script for prednisone to test the inner ear theory. I was only prescribed it for 3 days (5mg QID) and didn't notice much of a difference. It might be that it was such a short-term though and/or because it was a low dose that I didn't have a response.

I see the rheumy again in a few weeks.. So far little to no response on the sulfasalazine (almost 3 weeks now since I started it). I'm going to ask about adding something else during that appointment. Though I've been reading more pubmed articles on SSZ and methotrexate and it seems like most studies are saying they are not beneficial for AS? Can anyone shed light on that (it's very disheartening)? I'm most interested in taking things that will slow progression and hopefully help the dizziness. Anyone have any suggestions on medications I should ask about besides biologics (as I said I don't think they will give me a script for these yet).

Also, one thing to add all week my left eye has been twitching unexpectedly. It has not really twitched before though I have had subjectively "weaker" vision at times in that eye for months now... I'm wondering if this could be a side effect of the SSZ or the prednisone (I haven't taken the prednisone for about 5 days now). I don't seem to have the symptoms of uveitis at least from what I've read about it.

I also started tracking my symptoms on a spreadsheet a few days ago. I figure this will be good to have to show doctors and for myself so that I can tell whether I am responding to any medications or not. I have it separated by morning/afternoon/night and rate symptoms (Back pain, Peripheral Pain, Dizziness, Fatigue) out of 10.


Dec 2016- Persistent feeling of being "off-balance", no true vertigo but feelings of dizziness.
April 2017- Pain started at first in calves, then back (location random), then knees and ankles. All diagnostic testing tried at this point normal.
Sept 2017- First visit to rheumatologist. HLA-B27+, Grade 2 sclerosis on pelvic x-ray, rheumy diagnosed AS.
Nov 2017- Cervical X-ray narrowing b/t vertebrae
Meds: Indomethacin 50mg BID
Re: Newly diagnosed looking for opinions/feedback [Re: miaoli] #279279
10/13/17 07:17 PM
10/13/17 07:17 PM
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Tulipan Offline
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I feel for you because what you're going through is similar to what I went through 30 years ago when nobody could give me a diagnosis. I took sulfasalazine for the first several years after being diagnosed with AS, but that was back before biologics. It didn't do anything for me.

I think your rheumatologist made the right diagnosis because of the x-ray results, plus the fact you're HLA B27 positive. Is there anyone else in your family with arthritis symptoms?

Dizziness has been a new symptom for me in the past couple of years. I do have some hearing loss, but the ENT said it was because of my age, not disease. I do have arthritis in my jaws and neck. I have had the same full-ear feeling. It comes and goes. One doctor told me it was inflammation of the eustachian tube (no mention of whether it was an allergic reaction or arthritis). One time it was so bad I actually had pain every time I swallowed.

If it's possible, you should be prescribed something other than ibuprofen. Sure, it's cheap, but it's horrible on the stomach and not that effective (in my experience). Keep trying NSAIDs until you find one that works for you. They help with the ear fullness also.

A diagnosis of AS does suck because there is no cure (so far), but the more you learn about it and the better you can manage it, the smoother it will go for you.

Re: Newly diagnosed looking for opinions/feedback [Re: miaoli] #279280
10/13/17 08:39 PM
10/13/17 08:39 PM
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Hi Maioli,

I don't know if I can be helpful or not, but here goes.

My twin sister began having significant dizziness a few years ago. All the initial testing was normal and she kept getting referred to different doctors, as you have. Eventually she was sent to an ENT who a ran a test where they laid her on her back and blew air into each ear, one at a time, causing a spinning sensation--all the while monitoring her eyes. The test indicated that she had a significant vestibular weakness in her left ear. I think this is different than the testing you had in the ER? (which she also passed).

She was then sent for an MRI of the left ear, which showed inflammation. What has caused the inflammation is unknown. The ENT blamed the shingles, which can cause this effect, but she had no other indications of shingles. Shortly after that time, she also developed symptoms of Sjogren's syndrome and now also has a positive ANA. During that time I also developed a couple of autoimmune diseases and now have developed spondylitis--so clearly we have lots of inflammatory things going on with us, so we tend to think that is the reason.

Anyway, the inflammation has caused permanent damage to her inner ear. There are no medications to help, however she was given some specialized physical therapy and well as exercises to do at home that have significantly lessened her dizziness.

All the Best!


Karen
Female, early 50's, HLA B27+, family history of SpA
Diagnoses: USpA (9/17), limited Scleroderma/Raynaud's phenomenon/Sjogren's syndrome (1/16), stroke (8/15), Factor V Leiden (8/15)
AS symptoms: right heel enthesitis/tendonitis; elbow tendonitis; mild low back and hip pain/stiffness; normal MRI
Treatment: Enbrel; Xarelto; vitamins D3, B6, B12, folate

Re: Newly diagnosed looking for opinions/feedback [Re: miaoli] #279310
10/18/17 02:25 PM
10/18/17 02:25 PM
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miaoli Offline OP
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Tulipan,

Sorry to hear you are dizzy too! The first time I went to the ENT before I had pain and before I was dizzy (it was just ear fullness) the doctor also thought E-tube dysfunction. They prescribed corticosteroids for that twice now which did nothing. Have you had any success in treating the dizziness? I've tried pretty much everything for it at this point with no effect. Again, I think because what I have going on is not "true vertigo". As far as NSAIDs I did try diclofenac but it didn't work as well as ibuprofen and I was worried about BP problems since mine already tends to be a high normal. I'll ask about other options when I see the rheumy on the 25th.


Kglenn,

I have not had a test like your sister I believe its called caloric testing? Also I didn't know they could do an MRI of your ear! This may be a silly question but would that show on a brain MRI (I've had one which was normal). Her situation sounds like vestibular neuritis (but maybe not did she have a specific diagnosis?) which I've been more or less cleared of by a Neuro and an ENT. I suppose it couldn't hurt for me to visit the ENT again though.

General update: I've had severe numbness in my upper lip all week (I've had this symptom on and off throughout but never mentioned it to the doctor , I'm now wondering if this could be AS related [though I'm wondering if everything I have going on has a correlation to the AS at this point] I don't know why I never brought it up to the docs. I think maybe because it comes and goes and also I didn't want the docs to think I was nuts (which after 9 months of normal test results for everything under the moon pre-diagnosis I was starting to think the doctors thought I was nuts anyway. The lip numbness maybe has to do with never having my wisdom teeth removed though(maybe?).

My plan at my next appointment(10/25) is to ask what the requirements are for getting biologics here, ask about maybe adding methotrexate, and also ask about having my thyroid tested.

I'm thinking it's possible a thyroid problem is causing my dizziness. One neurologist brought up testing my thyroid months ago but at that point I had had a lot of blood work done and assumed someone had probably tested my thyroid, that Neuro agreed that if I had had blood work they probably checked my thyroid and we decided against it. Since I don't know for sure if this was tested though I'm thinking it'd be a good idea. Thyroid problems do run in my family and I've read some research suggesting if one has AS they are more likely to also have thyroid problems. I'm just grasping at straws at this point. My quality of life would be so much improved if I could get the dizziness straightened out.

Thanks everyone for all the input so far by the way!


Dec 2016- Persistent feeling of being "off-balance", no true vertigo but feelings of dizziness.
April 2017- Pain started at first in calves, then back (location random), then knees and ankles. All diagnostic testing tried at this point normal.
Sept 2017- First visit to rheumatologist. HLA-B27+, Grade 2 sclerosis on pelvic x-ray, rheumy diagnosed AS.
Nov 2017- Cervical X-ray narrowing b/t vertebrae
Meds: Indomethacin 50mg BID
Re: Newly diagnosed looking for opinions/feedback [Re: miaoli] #279338
10/23/17 09:32 PM
10/23/17 09:32 PM
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ThreeG Offline
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This is very interesting. I have never connected AS to my balance issues. I've had problems on and off since my late 20s. I'm now in my early 40s. The first issues were vertigo. I've had both the sort where the room is spinning and where the spinning feels like its inside my head. Both are miserable. Thankfully, I haven't had a bout of either lately. More recently (and coinciding more with the arthritis) is a sense not unlike what you describe, though not as constant. For me, darkness and reaching over my head are the chief triggers. If my husband accidentally turns the light off at the ceiling fan and I reach up in the dark to turn it on, I start weaving around uncontrollably. I have trouble walking the dog after dark, and I had to stop running in dusk/dawn light because I fell several times. I haven't pursued a further diagnosis of this issue. Sometimes I start to wobble in daylight and for no apparent reason. Like you, I had the full MS work-up once upon a time, which was thankfully negative. I'll be curious to hear what you find out. The weirdness of these disorders continues to amaze me.

Re: Newly diagnosed looking for opinions/feedback [Re: miaoli] #279351
10/25/17 04:32 AM
10/25/17 04:32 AM
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miaoli Offline OP
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Hi ThreeG,

I'll let you know if I get any answers! Like you mine does worsen if there is a sudden change in lighting (if for example I turn the light in my room off and on I get I worse than usual bout of dizziness that is usually short lived but worse than the chronic all day everyday dizziness).

General update:

I went to the rheumatologist for follow up today and he did a 180 and said dizziness isn't associated with AS (super annoying !). I responded with "but you said that because of the AS my immune system could be " -he cuts me off and says "affecting your ear'. So confusing. He then started typing up a script for diphenidol and I said "tried it, doesn't work. I've been to more than one ENT, neurologist etc before I came to you.Neither does cinnarizine, flunarizine..." -he cuts me off again and says "wow this is very unusual". I said "do you think maybe thyroid?" And he said no thyroid problems don't cause dizziness (I didn't argue but I've been told that they can by a Neuro).

I also brought up my eye twitching and he told me to see an eye doctor for possible uveitis. I also finally brought up that my left lymph node on my neck has been swollen for months (I didn't bring this up previously to any doctors because my friends were making me feel like a hypochondriac ) he felt my neck said its unusual and I now have to go have an ultrasound next week. (Anyone have this with AS?)

this is all very frustrating.


Dec 2016- Persistent feeling of being "off-balance", no true vertigo but feelings of dizziness.
April 2017- Pain started at first in calves, then back (location random), then knees and ankles. All diagnostic testing tried at this point normal.
Sept 2017- First visit to rheumatologist. HLA-B27+, Grade 2 sclerosis on pelvic x-ray, rheumy diagnosed AS.
Nov 2017- Cervical X-ray narrowing b/t vertebrae
Meds: Indomethacin 50mg BID
Re: Newly diagnosed looking for opinions/feedback [Re: miaoli] #279417
11/08/17 01:44 PM
11/08/17 01:44 PM
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miaoli Offline OP
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Just a quick bit for anyone with similar symptoms (my imbalance / dizziness is still not explained) I found this article.

https://academic.oup.com/rheumatolo...atients-with-ankylosing-spondylitis-have

I only read the abstract and I know it's a small study but it's interesting to me. It tells me maybe it is related to AS.


Dec 2016- Persistent feeling of being "off-balance", no true vertigo but feelings of dizziness.
April 2017- Pain started at first in calves, then back (location random), then knees and ankles. All diagnostic testing tried at this point normal.
Sept 2017- First visit to rheumatologist. HLA-B27+, Grade 2 sclerosis on pelvic x-ray, rheumy diagnosed AS.
Nov 2017- Cervical X-ray narrowing b/t vertebrae
Meds: Indomethacin 50mg BID
Re: Newly diagnosed looking for opinions/feedback [Re: miaoli] #279425
11/10/17 05:34 PM
11/10/17 05:34 PM
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WhiteCell Offline
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.Very interesting post and thread. Thanks.


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
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