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#279173 - 10/03/17 04:31 PM Newly diagnosed looking for opinions/feedback
miaoli Offline
Registered Visitor

Registered: 09/27/17
Posts: 8
Hello all,

Sorry this will be a long post but I feel it's important to get everything out there. I will post my full story followed by a list of my questions/concerns at the end if you would like to skip the full story. Thanks in advance for any advice/feedback/opinions!
I guess I should start by saying I'm a 26 year old man.

Almost 2 years ago I had an ear infection. The ear infection cleared, but my ear always felt "full" after the infection passed. I was cleared by the ENT and just went about life normally. I had no other problems except the "full" feeling which never went away, but was only mildly annoying, everything else was fine.

In December of 2016 (about 10 months ago and probably a good 8 months after the ear infection) I woke up one day with dizziness/balance issues. I initially thought it was just a hangover but it persisted and has been present ever since. About 2 months into the dizziness persisting all day every day I decided to go to the doctor. I should point out the dizziness was never "true vertigo" no sensation of the room spinning or myself spinning, I just always feel like I'm going to lose my balance.

I first saw an ENT (one of many) because of the persistent ear fullness problem, my first thought was "hey the dizziness is an ear thing". The ENT did a hearing test which was normal. Also my ear itself looks normal. I was referred to a neurologist. At some point my dizziness was bad enough that I went to the ER. The ER ran a CT scan (brain) which was normal. I went to a neurologist a few times and he just kept giving me new medications to try (betahistine, flunarizine, gingko biloba, diphenidol, meclizine) none of them worked.

I eventually went to a different neurologist. He performed the dix-hallpike maneuver to check for BPPV which was normal (no nystagmus). He said that he thought I most likely had vestibular neuritis(no official diagnosis though), he gave me more meds (I forget what exactly they were but they were the same ones I had already tried). He said that maybe if I took the medication longer my dizziness would go away. After about a month there was no effect. This neuro ordered an auditory brainstem evoked potential test which was normal. This neuro then referred me to a different ENT. Before that appointment I ended up going to the ER again when my dizziness was really bad. The ER doc did the dix-hallpike maneuver and the Epley Maneuver. Dix-Hallpike was again normal (no nystagmus) and the Epley Maneuver provided no relief. At my appointment with the new ENT he ran bloodwork which all came back normal. He cleared me of the problem having anything to do with my inner ear.

I eventually went back to my original neurologist at about the 5 month mark of symptoms. At this point (actually closer to the 4 month mark) I was beginning to get pain in my knees/calves/ and back. I also started seeing a chiropractor once a month around this point for the back pain. The back pain was fairly mild but annoying, the knee and calf pain was worse but bearable. I didn't make much of the pain at this point yet because I thought I just had poor posture due to trying to correct my balance which led to the pain. The original neurologist ordered a brain MRI. The brain MRI was completely normal (I was glad to hear this, I was thinking MS and the normal ABEP and brain MRI seemed to (mostly) rule that out. Also none of the doctors thought it was MS when I brought up that possibility). After the normal brain MRI this neurologist told me to wait a few months before returning and see if the problem went away on its own(super annoying news when I was already almost 6 months into symptoms at this point). The neurologist also stated that he no longer thought my inner ear was the issue (so at this point cleared by both a neuro and an ENT of an inner ear issue) At this point in time all testing came back completely normal except my blood pressure would occasionally be "high normal - prehypertension".

Around June though my symptoms spontaneously resolved by about 50% (pain, dizziness, everything). All of the symptoms were still there but a little better. I thought "hey maybe this was vestibular neuritis after all and my brain is finally starting to compensate". I stopped seeing doctors altogether for 2 months and was hoping that I would eventually be fully recovered.

2 months later all of my symptoms came back full swing, and the pain was worse than before. At this point the pain was in my calves, knees, ankles, and to a lesser extent my back. Still had the issue with dizziness/balance. I consulted a GP who suggested I be tested for Lyme disease.

I went to an infectious disease doctor who ordered a Lyme test (ELISA). The test was negative, but Lyme testing is notoriously inaccurate so the doctor decided to treat with a month of antibiotics anyway (I am originally from an area with lots of ticks and was helping remove ticks from a dog approximately 1 month before symptoms started). Lyme seemed to fit my symptoms perfectly and I thought I finally had found my answer. After a month of antibiotics and maybe 2 weeks of a self-treatment herbal protocol I felt no difference in symptoms. The infectious disease doctor referred me to a rheumatologist and ran blood work in advance of my appointment (CRP, CBC+DC, WBC, E.S.R, RA factor, RPR, SGOT, SGPT). I decided to go ahead and see a rheumatologist to try and rule out everything I could but was fairly convinced Lyme was the issue at this point so continued taking the herbal protocol.

At my first appointment with the rheumatologist all the blood work my infectious disease doctor had ordered was in and it was all completely normal. The rheumatologist told me he was ordering more bloodwork (which surprised me!) and a pelvic x-ray and a spine x-ray. I asked what he was testing for and he said ankylosing spondylitis. I admit I didn't know much about it, but had looked into it a little bit before and did not think my symptoms matched at all. I immediately asked him "but what about my dizziness?" (this is what I consider to be my main issue. Yes I'm in pain everyday, but the dizziness is what is really interfering with my life). He said "well it's rare but possible to have dizziness with AS". I left thinking I would return in a week with normal results and be tested for something else.

To my surprise when I returned to the rheumatologist he told me I had tested positive for the HLA-B27 gene. He also told me that my pelvic x-ray revealed Grade 2 sclerosis. He said my spine x-ray still appeared normal.He said that the test results coupled with my symptoms were sufficient to diagnose me with AS. I was in shock and essentially asked him "are you sure" and he more/or less said yes he was sure. I asked him again about the dizziness issue. He said "it's rare, but it's possible that because of the AS your immune system is overactive and attacking your ear and this is leading to your dizziness". He asked if I had seen a neurologist or ENT and I told him yes multiple and about the normal brain MRI etc. He prescribed sulfasalzine 500mg BID and Ibuprofen (I had already been taking ibuprofen almost daily OTC for pain). He said that the sulfasalazine might help get my immune system under control which would also in turn maybe help my dizziness. I am to follow up with him in a month.

Sorry that was a long story! Here are my main questions/ points I would like feedback on.

1. Would you trust the diagnosis of ankylosing spondylitis based on a positive test for the HLA-B27 gene, knee-leg-ankle-back pain, and grade 2 sclerosis on the pelvic x-ray. My rheumatologist more or less said he is sure that I have AS. Also from some of my own research it seems that AS is a fairly straight-forward diagnosis when it appears on radiography. I go back and fourth, I REALLY wanted to find out what was wrong with me but I also was hoping it would be something curable, and not something permanent like AS. I will likely seek a second opinion at a later date just in case, but would like to hear your thoughts.

2. Have you yourself experienced chronic and persistent dizziness with AS(or know someone with AS that has)? What do you think of the doctor's theory that my immune system is attacking my inner ear due to AS(I spoke with someone who was super helpful who said that dizziness and ear issues can definitely be associated with AS, but would like to hear opinions from others as well). Also what do you think of my doctor's thinking that sulfasalazine will help with this issue by suppressing my immune system?

3. Is sulfasalazine enough to start? This is the only DMARD I was prescribed. From what I read DMARDs can help slow/stop AS progression which I really want to do of course. However, I've read some conflicting studies about whether or not Sulfasalazine can actually treat AS or not (I have read some research suggesting it is beneficial for early peripheral disease and some research saying it is not useful for AS). I'm lucky at least that I was diagnosed fairly early (my doctor said grade 2 is not that bad yet, and the spinal x-ray was still ok), but I want to do everything I can to feel as well as possible and hopefully keep this disease from progressing. Should I ask to be prescribed any other medication or is Sulfasalazine a good start? I have not noticed a difference yet but have read that it takes a minimum of 6 weeks to start working. I don't think my doctor would be likely to prescribe biologics at this point (I didn't ask about them, but he seems to be trying to go about this as conservatively as possible).

4. I went to a physical rehabilitation clinic today. The treatment they are doing is shockwave therapy and infrared lamp. Has anyone had any success with these types of treatments?

I think that's all for now! Sorry for such a long first post. I'm having a lot of trouble wrapping my head around all of this (and am actually pretty depressed about the diagnosis, but also somewhat glad to at least finally have a diagnosis) and any feedback/opinions are much appreciated.

Thanks!
_________________________
December 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.
September 2017- First visit to rheumatologist. HLA-B27+, Grade 2 sclerosis on pelvic x-ray, rheumy diagnosed AS.
Medications: Sulfasalazine 500mg/BID,Ibuprofen as needed.I take a multivitamin and vitamin B daily.Also take MSM-Glucosamine supplement.

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#279175 - 10/03/17 06:42 PM Re: Newly diagnosed looking for opinions/feedback [Re: miaoli]
theyoungestmuse Offline
Registered Visitor

Registered: 11/15/15
Posts: 35
My dad had AS and meniere's disease. He couldn't walk from the dizziness and would vomit. The meds didn't work so he had surgery. My rheumatologist indicated they were both auto-immune and in the HLA region genetically. I don't know if the meds for AS would help meniere's. I know Enbrel helped my vision. Reducing inflammation would be key. Did any of these specialists rule out meniere's disease?
_________________________
HLAB27+(thanks,dad)iritis at 17, plantar fasciitis at 22, sacroiliitis at 25,first image at 31,diagnosis of AS at 48(hello medical community!!) it's all been downhill since(Cosentyx,Celebrex,Trazodone,Tramadol,high Omega3,A&D to tame immune system)

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#279176 - 10/03/17 08:45 PM Re: Newly diagnosed looking for opinions/feedback [Re: miaoli]
Jlove621 Offline
Registered Visitor

Registered: 09/21/17
Posts: 10
This probably won't help as I have not been official diagnosed yet I was negative for the gene but have many of the symptoms of AS I'm going back in Friday to talk about options but...the dizziness is interesting to me because I had a couple episodes of vertigo and after those I had a constant dizZiness. I went through the same treatments and tests with a general practitioner and I referred myself to a neurologist thinking MS as well. All was clear. But my neurologist thought it was a form of migraine. He put me on ametryptiline (unsure of the spelling) that has helped considerably. Me being the person I am, I hate taking medications daily so I only take it if I feel the dizziness coming back. And I haven't taken it in a couple months. Just a thought if the medication you are on doesn't help.

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#279179 - 10/03/17 11:07 PM Re: Newly diagnosed looking for opinions/feedback [Re: miaoli]
miaoli Offline
Registered Visitor

Registered: 09/27/17
Posts: 8
theyoungestmuse- Meniere's was what I first suspected(before I ended up getting the pain). I think the ENTs have ruled it out though due to me not responding to betahistine. Also I don't have the 2/3 symptoms needed for a Meniere's diagnosis. I don't have any objective hearing loss (subjectively I think my hearing has gone down in my left ear), I don't have tinnitus, and my dizziness/balance doesn't seem to count as it is not "true" vertigo and it is not episodic. I also have no nystagmus and have never had nystagmus which is typical during a meniere's vertigo attack. It is something I'll keep in mind though!

I have read about auto-immune inner ear disease and it seems that people who have an autoimmune disorder are more likely to develop it. It also seems to have a correlation with AS. I've thought about going to an ENT now that I have the AS diagnosis and seeing if they think AIED is another problem I have going on. Apparently if it's suspected they usually prescribe prednisone to start and if symptoms subside with prednisone it helps confirm a diagnosis. Prednisone cannot be continued long-term however so AIED is usually treated with immunosuppressive drugs after a course of prednisone from what I've read. I haven't seen sulfasalazine being used specifically for this problem, but since it's immunosuppressive maybe my rheumatologist is onto something. Part of me wants to wait to see if I have a sulfasalazine response and report back to the rheumy for further treatment/ideas about the dizziness. The other part just wants to try and get prednisone asap and see if there is a response.

Jlove621- No problem without having a diagnosis I'm open to any and all opinions! I haven't taken ametryptiline, but I did take flunarizine which is used to treat migraines, but it didn't do anything. Good luck with figuring out what's going on! I know how frustrating it is not having a diagnosis.

Thanks for your responses I appreciate it!


Edited by miaoli (10/03/17 11:20 PM)
_________________________
December 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.
September 2017- First visit to rheumatologist. HLA-B27+, Grade 2 sclerosis on pelvic x-ray, rheumy diagnosed AS.
Medications: Sulfasalazine 500mg/BID,Ibuprofen as needed.I take a multivitamin and vitamin B daily.Also take MSM-Glucosamine supplement.

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#279182 - 10/04/17 12:57 PM Re: Newly diagnosed looking for opinions/feedback [Re: miaoli]
SouthernMoss Offline
Registered Visitor

Registered: 03/12/13
Posts: 1760
Loc: MS
1. It sounds like your rheumy is pretty certain, so I would trust his diagnosis. I do think a second opinion is a good idea though, especially since you seem to have some doubts.

2. I have occasional dizziness that my PCP diagnosed as BPPV just based on my description of the dizziness. It does seem to respond to low-dose valium. (I couldn't tolerate meclizine.) I have found it much improved since I started Humira, so I wonder if AS inflammation was playing a part.

Also, I was treated for TMJ many years ago, and I know that AS can cause TMJ issues. TMJ symptoms can include ear problems such as dizziness, ear fullness, tinnitus, and balance problems. Might be worth considering.

3. Sulfasalazine is probably enough to start. You don't want to throw too many things at it all at once or you won't know which med is actually working and which isn't. It's an unfortunate part of AS that finding the best treatment includes a lot of trial and error.

4. I have not been treated with shockwave therapy or infrared lamp therapy.
_________________________
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 A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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#279201 - 10/05/17 10:24 AM Re: Newly diagnosed looking for opinions/feedback [Re: miaoli]
miaoli Offline
Registered Visitor

Registered: 09/27/17
Posts: 8
Thanks for the response!

I know bppv is not the issue for me as I've been tested for that a few times now. Interesting that your dizziness got better with humira maybe I'll respond to sulfasalazine.

I don't believe I have any tmj issues but I supposed it's something to think about.

Thanks again !
_________________________
December 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.
September 2017- First visit to rheumatologist. HLA-B27+, Grade 2 sclerosis on pelvic x-ray, rheumy diagnosed AS.
Medications: Sulfasalazine 500mg/BID,Ibuprofen as needed.I take a multivitamin and vitamin B daily.Also take MSM-Glucosamine supplement.

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#279217 - 10/06/17 02:25 PM Re: Newly diagnosed looking for opinions/feedback [Re: miaoli]
Banana Offline
Registered Visitor

Registered: 07/23/06
Posts: 6501
Loc: New York
If you have SI/hip x-rays that show something...it is AS. It is a a strong case for AS.

BTW, you can have arthritis in your ear/jaw/ neck that can cause dizziness.

The latest research indicates early aggressive treatment so I would hope you would be on a biological soon. It might quickly fix your dizzy issue.
_________________________
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.

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#279223 - 10/07/17 01:23 PM Re: Newly diagnosed looking for opinions/feedback [Re: miaoli]
miaoli Offline
Registered Visitor

Registered: 09/27/17
Posts: 8
Unfortunately I live abroad (from the US originally ) according to some information I've gathered the country I'm in won't give me biologics until I fulfill certain criteria (3-4 months on oral medications and evidence of inflammation on ESR and CRP blood tests) my blood work with these is normal at this point. I've read a lot of conflicting info on sulfasalazine being beneficial. Can this medication actually be helpful? I've read it does work for peripheral pain and my legs knees and ankles are where my pain is at its worst. I'm only a week in I know it in general takes at least 6 weeks to work. Also can sulfasalazine slow as progression?
_________________________
December 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.
September 2017- First visit to rheumatologist. HLA-B27+, Grade 2 sclerosis on pelvic x-ray, rheumy diagnosed AS.
Medications: Sulfasalazine 500mg/BID,Ibuprofen as needed.I take a multivitamin and vitamin B daily.Also take MSM-Glucosamine supplement.

Top
#279224 - 10/07/17 04:27 PM Re: Newly diagnosed looking for opinions/feedback [Re: miaoli]
Banana Offline
Registered Visitor

Registered: 07/23/06
Posts: 6501
Loc: New York
Darn. My bloodwork is/was always normal. Sulfasalizine is mild, but MTX can help the peripheral joint issues better.

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.

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#279247 - 10/09/17 03:07 PM Re: Newly diagnosed looking for opinions/feedback [Re: miaoli]
Nicole_B Offline
Registered Visitor

Registered: 04/14/17
Posts: 49
Loc: New England, USA
I don't know what I have yet (no diagnosis, or at least not all of my symptoms have been explained yet), so take my answers with the appropriate grain of salt.

To your first question, from everything I have read and heard, that is enough to diagnose AS about as definitively as one can.

As for whether AS can cause the dizziness or whether it's your immune system being overactive due to AS... I don't know. It makes some kind of logical sense, but it does not sound like there are any studies on that specifically (even so, it would be hard to verify the mechanism I imagine). Also, my understanding is that AS is technically auto-inflammatory, not autoimmune. I do not have a firm grasp on the difference, but my understanding is that autoimmune is the body actively attacking itself, auto-inflammatory is essentially an overkill of a relatively normal inflammatory response. Whether they will one day find the appropriate information that indicates AS is autoimmune, and whether it could be possible given current info that we just have not identified whatever needs to be identified to classify AS as autoimmune, I definitely don't know.

Anna mentioned above the possibility of jaw or neck issues that can cause dizziness, which I have also heard of, although there does not seem to be an overabundance of information on it. I imagine this could be true even without pain in those areas, but it does make it seem less likely.

To your second question, I have also had dizziness and begun wondering about possible connections as well. When some of my initial symptoms that made me think something was up started (about 3 years ago) I had some episodes of dizziness that I ended up thinking were due to medicine I was on at the time that was giving me a host of unpleasant side effects. Most/all of these disappeared when I went back off of the medicine, aside from the rib pain. Since then, I've had occasional bouts of dizziness that I mostly ignored and that weren't especially bad or disabling, just slightly annoying (mainly just feeling slightly unsteady). My (pain) symptoms have gotten worse over the last 3 years, particularly in the last 7ish months, and in about the last month or two I've started having more dizziness. Just recently, I got an upper respiratory infection, and while I was in the 'fighting it off, not quite full-blown sick' stage, I got a really bad bout of vertigo -- I'm pretty sure with nystagmus since I could basically see it myself, that while sitting still I could not keep my eyes on the same place on the wall. The bad vertigo lasted a few hours, but I kept feeling very unsteady for a few days. Now I still feel slightly unsteady, but it is manageable. Although this recent bout is easily attributable to a virus or something, it made me remember/realize that it's not uncommon for me to feel a bit unsteady for a day or a few hours, and I am starting to wonder if lately it's kind of just stayed at a low-level without going away completely. Basically, I am starting to wonder if something is up with it, but since I have other more pressing issues to try to get answers for, I'm not sure how/whether to pursue it with doctors. I do have the fullness feeling in my ears, but I have also always run on the waxier side, so could just be that.

I can't say, obviously, whether it's the same root cause or not, but that has been my experience so far. I do have some periodic neck pain though and I have had jaw pain/tightness since I was a kid, so it could just be that for me.
_________________________
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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