If you look back, what age could you ... - Hughes Syndrome A...
If you look back, what age could you say you started to see symptoms of Hughes Syndrome?
Please select one:
I had a lot of headaches when I was in college.
I had no symptoms prior to my dvt and diagnosis at age 18
I was diagnosed in my 20s and that is what I voted, however, I was 13 - 14 when I started having pains in my joints that I now believe were somehow connected with this syndrome. I have yet to have it confirmed by any doctor that joints pains, that are phantom like, are intensely painful, but come and go....sometimes they only last hours, but sometimes days. They are mostly often in my hands, wrists and toes and ankles.
I started with migraines at the age of 13 and regularly had swollen fingers and corn beef skin
During pregnancy premature baby, late pregnancy losses Dvt
Hellp syndrome
Later heart attack during menopause age 50
top_hole from age 7 I frequently used to cry at night with agonising growing pains in my legs. I,m now age 70.
I was diagnosed in my 40s but I've had migraine's from the age of 14. I was in my late 30s when I had the dvds and miscarriage.
I believe I was born with this abnormality. When I was a baby they referred to my emaciated condition as "failure to thrive". Strep throat and ear infections began in the first year, continued longer than average and, combined with allergy to all three catagories (1952) of antibiotics, usually got worse or symptoms would disappear but not the germ. This continued in one form or another throughout my life with more years ill than not. It continued in my late teens and early twenties with rheumatic fever, complications with menses, multiple miscarriages, and stroke at age 49 with a diagnosis of CNS vasculitis. Then fibromyalgia, osteoarthritis, migraines, etc. Bladder cancer at age 58 (still recurring).I am now 60, fighting cancer with my right and APS with my left. Considering I was advised I had 2 years to live when I was diagnosed with CNS, I'm a pretty lucky lady and a champ in the ring! (so far)
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Don't know if it was the mumps or puberty but things changed around age 12 and I think that was the beginning of the symptoms.... fuzziness, memory loss, headaches, roaming pains, IBS, vertigo etc etc. Wasn't diagnosed until after several miscarriages in my early 40s
From 7 year old gross growing pains in thighs, breaking chilblains on hands and feet, many nosebleeds for even hours. kept out of sun, eye and terrible teeth probs etc etc into my research of cardiovascular events leading to London d/x in 2010
From headaches to fatigue, 1st day of 5th grade, I woke up with 1/2 of my face so swollen, that I couldn't see through my left eye.
I put 20+ because that is when I had my first miscarriage but I started getting migraines at the age of 13 and I have severe charly horses (muscle cramps) since 13 all over even in my neck.
'Patterned skin' on thighs and absences aged about 10, Reynauds. No symptoms until my early 20s when I had headaches resulting in blood clot in eye and subsequent loss of sight. Aged 30 miscarried half a twin. No further symptoms until my arly 60s when I thought I had Alzheimers, also vertigo and poor balance. Diagnosed with primary APS after a TIA aged 66!
I was 8 or 9 when I started to get really bad chilblains and blotchy rashes on my legs. Docs told me there was nothing i could do about it. Spent 2 weeks in hospital when I was 29 with suspected stroke. Didn't get diagnosed for another 9 years.
I had a DVT aged 19 but it was put down to smoking (don't anymore!) or contraceptive pill(came off it) then OK till my thirties when had high bp, heart murmer and 4 miscarriages and developed epilepsy. In my late thirties had Tia's and diagnosed. with Aps and put on warfarin aged 41.!
Now also on thyroxine and plaquenil so I collect suitcase of meds from chemist each month instead of grandchildren from school Lol!
I was on a lot of steroids from age 8 (for asthma).
I suffered headaches, joint pain (was always having x-rays) etc.
I had my first episode of depression and started suffering from brain fog when I was 15, following coming off 5 years of injecting steroids.
As mentioned above I also had blotchy legs and chilblains.
I was given a cocktail of drugs including Libreum, Valium, Ponderax, Tenuate Dospan, and these are the only ones I remember!
All my symptoms were contributed to having become a raving hypochondriac.
By the time I reached my twenties I felt as though I was living within a Victorian, diving suit and I was tired all the time. It was more than 30 years later I was diagnosed but had to go Privately. Sadly it was too late to prevent damage to the brain.
Quite angry actually.
x
Have said 30+ but, on reflection, had migraines at puberty, aged 12 - which were probably very first signs?
Difficult to say but definately feel it is under 19 yrs.
It is very difficult to know when it started. i am not sure what is the trigger.
I had migraines from age 12, then years off random symptoms, always assumed I had arthritus as pains all the time. Sun allergies, blothcy skin, fainting all the time. Bad back pain etc but it always came and went, drs always thought it was strange but didn't know what so I stopped going to the drs about it and just got on with it. At about 25 it started cranking up and was having more pain regularly and spells of being really down, by 29 I could hardly walk or use my wrists and had no real quality of life so thought I had to do something about it! Got diagnosed and am trying to manage the best I can now! x
I had two miscarriages in my twenties, and in my thirties developed fairly mild migraines, livedo reticularis and reynaud's syndrome as well as false positive on the syphilis test then required in California a for a marriage license. (All of symptoms would point to a clotting disorder today). But none of this symptoms were even remarked upon by my doctors. I felt well most of the time and didn't consider that I had any health problems. It was all put together in hindsight by doctors after I had a stroke at 48 and was diagnosed with APS.
sgtraf 50+ years of memory. tick most boxes as a Male not Female,Brain M.R.I. looks like
Measles with scaring. Born early 40's
looking back to my chidhood days ( not that i have growen up much since then) was a bit slow as a kid i,d get there wot ever i was doing just took me longer than most , always cold tired ,then copped ashma, and chronic hay feaver over night at the age of 7, i mean could not go out day time summer, not even school, if u looked at me i would bruise, ashma dissapered gradualy by the age of 14, hay feaver calmed wen aged about 10 , still get hayfeaver today but not as bad, at the age of 17 , i started to get very bad nose bleeds, up to 12 a day every 2 to 3 days, this went on for six months ish, and vanised,i noticed then that i did not bruise at all even with a good clout, age 21 went to see a doc about a ganglian in my wrist , noticed my vein and asked to see it , looked at it and sent me to hospital, were, they found a 2 inch subclavical dvt, (sorry for the essay just a bigger pic for people to look out for as prevention is better than cure)
Since I was born I think as always had circulation problems but thought It was to do with my heart condition
I would say I was born with this. It is clearly a genetic issue in my case at least. Although my mother spent the whole of her pregnancy on some injections (she didn't ask what) threatening to miscarry and had a history of miscarriage, she claims both my sister and I were totally normal - even robust. She says something happened when I was around 2. It was never adequately explained but had something to to with my brain stem. She says I came home a completely different child, but doctors assured her this was simply a combination of her anxiety and normal changes (she was never convinced). I was an anxious, nervous child - dyslexic weird and bullied so its hard to say what caused what. I complained of blurred vision until it became clear no one believed me. Although tests proved perfect
Hearing, vision and a high IQ, I often failed to respond to noise, walked in to things such as lamposts daily and either struggled to understand what was going on around me, or just sat passively doing nothing. I started puberty around 9, I was mentally very young being the only girl for many years with breasts and periods wasn't fun but didn't really effect my problems. Interestingly though, I too like many of you got much worse around 12, I remember it very well, 2 weeks before my 13th I suddenly felt like everything got very heavy and I was swimming in jelly. I didn't care one bit - I just wanted to sleep. Eventually I got hospitalized, they said it was some sort of immune failure either caused by or causing an infection of my hind brain and stem. 4 years of recovery followed by 'post virul' syndrome until my early 30s when I had another major attack that left me slurring, slobbering with major vision problems and incoherent.
I have long suspected - before this was a recognized thing - these massive attacks all occurred during the natural process of brain pruning that happens at roughly these ages.
Yes, looking back I had terrible migrane type headaches which I could not shift and they would last for days which were very painful and as I was a typist had to carry on with the job in hand. The flourescent lighting used to hurt my eyes terribly also, but again there was no sympathy to be had so I had to endure this also. Again, I suffered with a lot of gum ulcers which flared up frequently and I would have up to 8 of them at one time. These two symptoms alone if I had know at a young age of 17+ that I had the beginnings of Antiphospholipid syndrome I could of had maybe some treatment, but I had never heard of it until I had four miscarriages at a much the age of 34 that this was the root of the problem and I was referred to a specialist doctor. I still have the syndrome, but now I know I can take medication for it.
