Newly diagnosed with ankylosing spondylitis

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Hi all, 

Sorry this will be a long first post,but I think it's important to get the whole story out there to get your full feedback. I guess I should start by saying I'm a 26 year old man. 

Back in December 2016 I began having an issue with constant dizziness and issues with my balance. Both worsening when standing still. I went to 3 neurologists and 3 ENTs with a diagnosis of "vestibular disorder not specified". 1 neuro thought that vestibular neuritis was the cause. So for maybe 4 months or so I believed that to be my issue and started doing VRT on my own based on youtube videos (the country I'm in doesn't have VRT, at least not in my area). The doctors tried treating my dizziness and balance issues with lots of things, betahistine, meclizine, diphenidol, flunarizine and my dizziness didn't respond to anything. They did the test for BPPV which was normal and I never had any nystagmus. Also my dizziness was never "true" vertigo, I never had the sensation of the room spinning or myself spinning, just constantly felt I was losing my balance. 

At about the 4 month mark I began having pain in addition to the constant dizziness in my calves. I wrote it off as not standing properly due to the balance issue and didn't make much of it when at the doctors. At about the 6 month mark both a neuro and an ENT said they no longer believed my inner ear to be the issue, but they still didn't know what the cause was. All bloodwork was coming back normal, I had a normal brain MRI, and a normal ABEP test (which I was glad to hear because I was worried about MS). I saw a cardiologist and had a stress test and ultrasound both normal. I also developed some minor back pain at around the 4 month mark and started seeing a chiropractor once a month. 

The pain and off-balance feeling have been constant since the 4 month mark. The pain moved into my knees and somewhat into my thighs. I also have pain in both ankles (though the left one I had  sprained about a year and a half ago and it never quite got back to feeling the same) The back pain is/was inconsistent somedays I had it somedays I didn't, but over time the trips to the chiropractor which would usually fix me up for about a month stopped working as long. 

At about the 8 month mark of having symptoms I decided to contact an American doctor (I'm from the US, but have lived in Asia for 2 years). The American doctor suggested that my issue may be Lyme disease (I visited home and am from an area in which ticks are prevalent about a month prior to any symptoms developing). During this time my knee pain,calf pain, and ankle pain had been increasing and were constant and I started taking ibuprofen fairly regularly. 

I went to an infectious disease doctor and got tested for Lyme via ELISA which came back negative, however the doctor decided to give me a month of antibiotics anyway because the tests for Lyme disease are notoriously inaccurate. The antibiotics didn't fix the problem so I started taking an herbal protocol for Lyme strongly believing this to be my problem (still not convinced it isn't part of what's going on).  

After the month of antibiotics the infectious disease doctor referred me to a rheumatologist who I saw for the first time last week. He said he wanted to test me for ankylosing spondylitis. I figured hey he's the doctor, but based on the symptoms I read I did not believe this to be my issue. My back pain is mild compared to my calf and knee pain, and I didn't find any info on AS causing dizziness. The rheumatologist ordered bloodwork and a spine/pelvic x-ray. 

I returned to the rheumatologist yesterday for my results fully expecting everything to come back normal as all my other bloodwork and diagnostic testing had up until this point. However, I tested positive for the HLA-B27 gene. Furthermore, the pelvic exam revealed sclerosis(the doctor said its "grade 2"wink. The doctor said this was sufficient for him to diagnose me with AS. The doctor said my spine is still ok which I guess is good. I asked him about the dizziness/balance issue as that is my worst symptom and was my initial symptom at the start of all this. He said although it's rare it's possible that with AS your immune system could attack the inner ear which could be causing this issue. He said DMARDs would possibly help with this and prescribed sulfasalazine twice/day he also gave me a lot of ibuprofen (cheaper to get it through a doctor than OTC here). He also asked me where I had the most pain and I told him my calves and knees. He said that it is common for AS to cause peripheral pain. I return to him in a month for follow-up.

What do you guys make of all this? Would you trust this diagnosis? I will likely seek a second opinion at some point just to be sure. The diagnosis was truly a shock for me... I really didn't think AS lined up with my symptoms at all (while I definitely have back pain it is probably my least troubling symptom it also doesn't follow any specific pattern such as worsening in the evening or morning). However, the doctor said (not exact words) he is certain. I guess I'd have more trouble believing the diagnosis if there hadn't been sclerosis that showed on the pelvic x-ray. I don't know if I'm just being skeptical or if I'm in denial. Also has anyone heard of AS causing persistent and chronic dizziness? What do you think of the doctor's suggestion that the AS is causing my immune system to attack my inner ear? If this is the issue I suppose I am at least lucky that it was caught early (the doctor said "grade 2" isn't that bad yet, and based on my other blood work he said my overall inflammation is low which is good). 

Any tips are much appreciated sorry for the long post still trying to come to terms with everything! 

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12 Replies

  • Posted

    Yes, I would trust the diagnosis.  You have AS.  Now has it caused your loss of balance symptoms?  Maybe, maybe not...  my guess (take that as you may) is you stumbled on this diagnosis.  Which is good!  Perhaps you can avoid some significant permanent damage to your spine.  (Most of us have not been that lucky)  welcome to this group, a group that you didn't ask to join, nor want to join.  Good luck on your journey!

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    • Posted

      Hi Pat thanks for the reply! I do realize I am lucky it was caught early I just wasn't sure how definitive a diagnosis is for AS.

      When you say maybe maybe not for the balance issue what exactly do you mean? Have you yourself had this symptom and or heard of it as a symptom ?

      What do you think of the doctors theory that the AS is causing my immune system to attack the inner ear and that sulfasalazine might help? I'm really hoping the most for improvement with that, the pain so far is manageable with ibuprofen. The imbalance and dizziness makes day to day activities much more difficult, and all other causes of dizziness have basically been ruled out so far.

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    • Posted

      I personally have not experienced the dizziness, loss of balance that you are having.  I understand how disabling those symptoms are.  My twin sister had awful inner ear issues.  Your symptoms make me wonder if her dizziness was related to AS?  Her symptoms were relieved for short periods with this head positioning stuff

      (sorry, can't remember the name of it!). She passed last year, before my diagnosis.  My rheumy said she would also have had AS.  Interesting, huh?

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    • Posted

      I'm so sorry to hear about your sister!

      Was the head positioning possibly the epley maneuver? That is used for treatment of BPPV and realigns "crystals" in your ear. BPPV is definitely not my issue, I've had that maneuver done twice with no change and also had the dix-hallpike maneuver (the diagnostic part of BPPV) which was not abnormal.

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  • Posted

    If you feel uncertain, then I agree, you should seek a second opinion. I will say, in my case, i have periods (sometimes hours or days) where I feel the same dizziness you are experiencing. Sometimes it is faint and others it becomes very discerning. I sometimes have peripherial pain without noticible back pain, so I believe that could be a legitimate symptom. AS is an autoimmune disorder and 'flare ups' come and go without warning. I can completely understand your hesitancy and questions. As like many illnesses, it is not a 'one size fits all'. It has taken me many years to recognize what my normal is and question when things change for me. My dad also has AS (he is 75) and his progression and symptoms has been different from mine. Good luck to you. There are some great resources online that may help you -providing explanations and possible answers.

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    • Posted

      Thanks for your reply and good luck to you and your father! I've tried joining some AS specific forums but need to be approved by moderators before I can start posting (still have not yet). I find hearing from people who actually have the condition most beneficial!

      I'm not glad that you have dizziness, but it is helpful for me to hear that someone else also has had this symptom. What did/have you done to get the dizziness under control? Is it something that you have just had to learn to live with?

      Again best of luck to you and your father! 

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    • Posted

      Unfortunately, yes it is something I have learned to live with. Doesn't mean it isn't frustrating though! It has prevented me at times from doing the things I enjoy (for safety reasons). I hope you find some relief and comfort as you learn how to manage your symptoms. If you do find a remedy for the dizziness, please post it and if I find anything helpful I will post for you. Best of luck to you

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  • Posted

    My daughter developed AS at nine. But it took two years and numerous doctors to get a diagnosis because she did not have back pain. Her pain was in her knees and ankles. Eventually it spread to her hands, jaw etc.  She is HLAB27+. 

    It wasn’t until she was 18 and started getting back pain that they put her on biologics. Prior to the back pain she was on prescription anti inflammatories  

    So yes. Definitely you can have pain in peripheral joints. 

    As for the dizziness, it may or may not be related to your AS. But if you have one autoimmune disease you are more likely to have another. Have your thyroid checked by someone who specializes in thyroid issues. My first symptom of hypothyroidism was being dizzy. 

    Can it affect your ears? Idk. But it can affect your eyes. Inflammation can affect any of your joints or organs. It doesn’t sound unreasonable that you may have swelling in your ears. (Inflammation). 

    I wish you the best of luck. 

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    • Posted

      Hi thanks for your reply! Good luck to you and your daughter.

      Hearing that it took her so long for her diagnosis I do feel like I'm one of the lucky ones in this case (as lucky as one can be when faced with a permanent diagnosis) since it was caught early for me.

      I don't know if my thyroid was ever checked I keep forgetting to ask! I will at my follow-up appointment next month. I've kind of just been assuming that it was checked during all the blood work I've had done (I've had probably 4-5 blood draws checking for various things since symptoms started, but I admit I can't remember what all of them were for)! Has your daughter responded well to the treatments? I certainly hope so!

      Good luck! 

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    • Posted

      She tried humira but it didn’t work. She is on cimzia and it appears to help her back pain. Eliminating gluten and dairy and beef has helped her knee pain. But helped is the correct word. It’s not gone. 

      However, we are hopeful that her spine will not fuse and she will find the solution.  

      She was an athlete. Naturally gifted in everything she did. That part of her life has changed. Now she’s concentrating on college. 

      I hope you find out why you are dizzy and can cure that part of the puzzle. 

      AS treatment seems to be trial and error for everybody. Good luck. 

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  • Posted

    I have been diagnosed with AS as well.  I too lose my balance from time to time.  I do not get dizzy really bad just enough to be unbalanced and once I catch myself then im fine.  Hope you are well.  I have a real hard time with my back more than anything else pertaining to AS.  
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  • Posted

    Hi, I also has dizziness and shaking arms and legs like MS.This was 7 years ago.  I was also told it was Lyme disease. But my condition worsened and when they did the blood work it came back positive so did two MRI's. This past week I have been in two different hospitals for the removal of a wisdom tooth which had joined itself into my lower jaw. They found a huge abscess which had traveled to my ear canal and up to my left eye socket and jaw bone. They didn't believe my plea that I am allergic to ALL antibiotics except Erythromycin which I had been taking for a month prior to going into hospital so they tested me for Azithromycin and I had an immediate allergic reaction and sent the ER into panic mode. They removed the wisdom tooth and some of the abscess but my neck has suffered so much from the pulling and shoving...and that's the c2 c3 and 4 discs being degenerated and spinal cord stenosis too. Plus thoracic and lumbar damage too. My face looks like an alien. and the pain is over the top even with Tramadol x 3 times a day. Always listen to your heart about Doctors and diagnoses, go with your gut feeling. I wish you luck and keep staying strong, You are very lucky so far. Stay that way. G

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