Has anyone either heard of or experienced any familial connection between MS and ankylosing spondylitis?
My young nephew is currently being investigated for the latter, due to unexplained leg and back pain (he’s only 11!)
I know they’re both auto-immune diseases, and that families (and individuals!) with one auto-immune disease can show a greater propensity for others.
When I was first told his symptoms, it did cross my mind: “Oh God, he’s not starting young with the old MS lark, is he?” I don’t have children, and know MS isn’t hereditary, as such, but I’ve always worried one of the boys (nephews) would have it. A great aunt of mine (my nanna’s sister) did, so we’ve already had two cases within the family.
But it seems the focus of the investigation at the moment is ankylosing spondylitis. Apparently that has a strong genetic component, but there are no known cases in our family (though I didn’t find out about the MS ‘til diagnosed with it myself). My sister is estranged from the boys’ father, so we’re not likely to get much information about any family history on his side, and I’m not completely sure he’d tell the truth, even if asked. I don’t think the implication any health issue was through him would go down very well (Just a guess!)
So I’m just curious whether there’s anyone out there who has both MS and ankylosing spondylitis in the family, and whether you’ve been led to believe there’s any connection. I used to think we were all fit as fiddles, but I’m starting to think we’re a really unlucky family, and didn’t get very good genes at all.
Hi Tina, My father has ankylosing spondylitis and I have ms so there maybe a connection. Mind you, I have mentioned it to GP and Neuro and they just shrugged it off.
Like you, I found a few hits that suggest emerging evidence there may be a connection, but it doesn’t seem very conclusive as yet.
Fudgey: that is interesting. How has your father been with the AS, if you don’t mind me asking? I don’t want to jump the gun and assume that’s definitely what my nephew has, as he hasn’t been diagnosed with anything yet. But of course, I can’t help wondering what are the implications for his future life, and quality of life, if it does turn out to be that.
Obviously it didn’t prevent your dad having children.
I know two “yesses” isn’t exactly a comprehensive survey - and AS is (apparently) many times more common than MS, so perhaps it would be surprising if nobody at all said yes, as there’s a lot of it about.
Does make me suspicious, though.
I know it won’t affect prognosis or treatment, whether it’s linked to MS or not - it will still be whatever it is. I’ve always had a sort of vague premonition I would have links to a disabled child - although he’s not visibly disabled at the moment, and it may yet turn out to be nothing.
But when I was diagnosed, I thought it must have been me the premonition was about, and nothing to do with any children in the family.
I just don’t know. My sister tends to be a bit hypervigilant with health matters - the kids are ALWAYS at the doctor’s with something or other.
Paradoxically, I worry that it IS something serious, as well as worrying that it’s all imaginary, but that the NHS now practices “defensive medicine”, which makes them reluctant to tell anyone to go home and stop wasting hospital time. I just don’t know. I don’t want it to be anything, but I don’t want the kids to grow up undergoing tests all the time over nothing, either.
Hmmm…very interesting. My brother has fibromyalgia too. I would like to think that one day we’ll now why we have it…but that’s me. I need reasons and not just “karma” as someone thinks of me. A friend alerted me to a FB post which says that in karma, I deserve it and that they are getting me a congratulations card. Charming or what ?!!
Hi again Tina, To be honest my dad wasn’t officially diagnosed until about 15/20 years ago and he’s now 81. He’s only got really bad within the last 4/5 years and he can’ t turn his neck so he cannot drive and he does suffer badly with Iritis,( I think that’s how you spell it ) similar to the ms symptom Optic Neuritis. He is in quite a lot of pain with his neck/back as the bones are now fusing together fairly rapidly. He was rushed into hospital last year after collapsing and it was found that the Naproxen he was taking to control the pain was actually poisining him somehow and it caused a massive abscess in his groin area and actually inside his intestines. He had been taking Naproxen for a good few years so needless to say he doesn’t touch that anymore and is on different pain killers which unfortunately don’t seem to deal with the pain very well. But as I say, this really bad spell has all developed fairly recently and I don’t know anyone else with the condition so based on that I would say hopefully your nephew will lead a healthy life. ( hoping he hasn’t got any sort of condition at all. )
Mrs. H, I think this “karma” thing is positively medieval! An otherwise perfectly intelligent, Oxford-educated friend started paying an arm and a leg to travel to France to consult - I think - a soma psychologist - after being diagnosed with sarcoidosis (coincidentally one of the differential diagnoses of MS).
It was all about how her negative thoughts had caused her to get ill! Now sarcoidosis, or sarcoid, like MS, is absolutely NOT a psychological illness. And if someone does have negative thoughts, I should have thought the very last thing they need is to be sent on a guilt-trip, by being told they’ve made themselves ill with it! Pffff!
Fudgey - thanks for the reassurance. I’m sorry to hear your dad is quite poorly now, but I suppose most of us can expect a bit of that post 75 (if we get that far). If I thought little neph wouldn’t be badly affected until his seventies, I could live with that - though of course, I’d rather he wasn’t affected at all. Unfortunately, early onset is not associated with a very good prognosis, so just hoping it isn’t that. Keep telling myself the uncharacteristically early onset, AND the lack of any relevant family history all point to AS not being very likely. I’m not sure doctors should come out with these things, when they (so far) haven’t any objective evidence to justify it. My neph has only just had the blood-tests, so they certainly haven’t come back yet, and he hasn’t had any scans or X-rays, so the only evidence must be his own description of the symptoms. Seems a bit premature to be naming the condition.
Will be sending my sister into a frenzy, Googling worst-case scenarios, and the poor little chap (who’s of a sensitive disposition already) will be thinking he’s got something fatal. I’m sure I had aches and pains as a child. OK, I did go on to develop MS, which might or might not be connected, but from what I can recall, it was only ever dismissed as “growing pains”. I certainly wasn’t sent to hospital for tests, and I’m glad. No need to medicalise every minor ailment.
Hello Tina, I have Ankylosing Spondylitis and also have spms. I was first Dx with AS in 1999 then Lupus in 2009 then Dx with spms in 2011. I had an uncle who had AS but no one else in my family to my knowledge has any of the above mentioned. All the above are autoimmune diseases. If you want anymore information feel free to pm me. Janet x
There doesn’t seem to have been a great deal of research into this, and some of the papers are about proposed research, rather than results, whilst others are pay-to-view, and I’m not paying $30 (or whatever it is) to access an academic paper that might turn out to have little bearing.
However, the fact research is being done at all suggests there must be grounds for suspicion.
So I’m thinking there’s probably a connection (and judging by my own little survey here).
I know it wouldn’t make it my fault if the nephews had some illness that’s related to MS. It would be pretty bad luck, but not anybody’s fault. But I still feel sad about it, because I don’t like to feel there’s a short straw going round our family somewhere, and every now and then, somebody has to get it. I wanted to believe it’s complete coincidence if either of the boys don’t feel well, but I’m not sure it is.
I’m still trying to stay hopeful that my nephew won’t turn out to have AS. A few things don’t quite fit. For example, everything I’ve read says a unique hallmark of the disease is pain is worse on resting, but improves with activity! I’m not sure that’s in line with what he’s reported, because he’s having problems with school activities like running and dancing, so he’s not “better with activity”. I don’t think he’s particularly complained of it in bed, either,which is when it should be worse, if the typical pattern was observed.
Then again, I don’t think consultants go around saying these things, for no reason. He must have some reason to believe that’s what we’re dealing with. If not, it’s a pretty irresponsible off-the-cuff guess.
I had lower back problems about 25-30 yrs ago and AS was mentioned, I can’t recall what happened after that if anything, but it all sounds interesting.
Thanks for the reply. Still no answers yet on little neph. He’s waiting for another hospital appointment. They do know his auntie has MS, but that’s not being treated as significant, at the moment. But it’s worrying me he’s complaining of achilles tendon problems, which is how I started, years ago. I’m now sure it was early signs of spasticity - my calf muscles were getting really short and tight, which was why I kept getting sore tendons. But that was years and years before I was diagnosed. It’s bothering me that anyone else in the family is now saying their tendons hurt. I hope it’s just a freaky coincidence!
If you look on the paleo diet boards, you’ll see loads of people with AS, arthritis, fibro and all the auto immune things so it does sound like they all have the same roots.
