Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Height loss?

What is the reasoning behind them saying you don't have AS when your SI is fused? That just does not make any sense. AS is not something that goes away. Once you have it, you have it forever. You need a new Rheumy!

I just don't know. At age 22 to 25, I was in a study. As part of that study for AS, I met many individual in varying stages of the disease. I met a woman who was fused straight and I thought she was fortunate (please understand compared to others who had not fused straight). She told me, at that time, to maintain my posture despite pain at all times and how to sleep.

I have that ingrained in me. I have no answers. I can access my reports from that study. I inquired. For now I am just so tired of the medical community. I do not know how my reports from then (December also) are conflicting. I asked the rheumy if she had those reports or had seen them. She said they were irrelevant and that it was normal to have sever SI pain at that age.

I can not find anything to explain my height loss. I have mentioned it to that rheumy as part of my question list but I never got that far. I asked about my symptoms. I was examined and out the office in less than 10 minutes. I feel defeated and was somehow looking to explain my height loss because honestly that they can't overlook that because I have my former GP's chart until I was 29. In that chart AS is discussed.

Thank you very much

Shel

Hello, Shel:

'
I agree with Donna and cemc and Molly but agree most with ineptwill this time.

Regrettably, 'stunting,' or loss of height, is as equally (exactly) rampant amongst persons with AS as osteoporosis and all pre-osteoporoses conditions.

As the spine degenerates and demineralizes, the vertebrae each collapse, incrementally adding to our cumulative loss in measured height. I went from a dizzying height of 5'7" to just over 5' today; if I were to lose more I might not be eligible for my Napoleon Complex.

FUSED SIJs plus only one chronic symptom of AS will always equal AS, but the physician who cannot recognize AS could not treat it properly, even if they got the diagnosis right, so no loss there.

HEALTH,
John

find a new rheumatologist. the difference will be night and day. i just got back from my rheumy and was reminded how invaluable a good doctor can be. and that was after years of getting the run around.

I've gone from 5'9.5 to 5'7 and I can see the "bend" in my shoulds/neck but am doing everything I can to not have it continue...lots of crunching when I do my exercises

Oh yeah, I've had height loss. I was once 5' 11" tall, but thanks to my kyphosis, I am now 5'5", and that's on a good day.

Brad

I reached just a hair above 5'9 and now I measure just a hair less than 5'8

I was 5'6" and now it's 5'5.5" due to a compression fracture at T9 several years ago. I'm only 54 now. You might need a DXA scan to look for osteoporosis.

I was very surprised when I was measured recently to find I am 1m 89cm (6ft 2in) when I was 1m 95cm (6ft 4).

Now I suspect I know why.

I was diagnosed 15 years ago but have only been prescribed pain meds and anti inflammatories, no rhuemy at present but was referred last week.