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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". 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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