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How many off us have aps as well as another auto immune illness?M

miley profile image
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My health story, glandular fever 14 year old which kept reacurring, some misscarrages but two wonderful children, hystorrectomy at 27 took my womb left my ovaries so no hrt needed, then came multiple sclerosis, followed by three major back opps then after last back op got dvt, next, tested positive for protien s and now aps, I am a fighter so this is not a woe is me all I asking is there a conection between any of these illness

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miley
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GinaD profile image
GinaD

In the US we call "glandular fever" "mono." I too had mono in my early teens -- actually throughout my teens. It was either 7 cases in 14 years, or 1 case which kept recurring for 14 years, or 1 case of mono and 13 misdiagnoses from incompetent doctors, or mis-diagnosed case(s) of toxoplasmosis -- a disease one gets from cat droppings (never owned a cat -- in fact, allergic to them) Various doctors advanced all of these theories to me.

I also had 2 children, but with no complications -- though the 2nd was a placenta previa (which as I understand it, has nothing to do with APS,) and also had pereclampsia for the final 2 weeks -- but with a fast, normal delivery (I'm told to thank my American Indian ancestor for this.)

I did have these dysmennorheas from hell -- for 12 hours each month I was bed fast -- or rather, sleeping-bag-in-the-bathroom fast. I was dizzy ( couldn't stand,) nauseus and subject to imperious, instant toilet demands from my tummy. (And since I couldn't walk, this explains the sleeping bag in the bathroom arrangement.) Also pain. Lots of pain. How much? Well, the most intense childbirth pain was only about 80% of my monthly pains.

It was hard to get through college in this shape, even harder to hold a job. I would have to try to convince profs why I had missed this or that test without prior notice, and dorm mates would find me camped in the bathroom and call the ambulance to take me to Student Health. ("No. I don't need to go to the hospital. Really. Just leave me alone. Come back and check on me every so often if that will make you feel better, but," . . here I look at my watch, "I only have 4 hours left and then I'll be fine. Really." ) ON those trips to Student Health one of the doctors would pump me full of various remedies in search of a way to treat this and so I could remain functional -- HRTs, opioids, muscle relaxants; "From Soho down to Brighton/ I must have tried them all." But nothing ever worked. Finally, a doc back at home who happened to be the one who saw me at the ER after I passed out again suggested that then new over-the-counter, naprosyn. Which worked.

After my first child all these issues went away. I haven't thought about those periods-from-hell in years. I wonder if there is a connection between what must have been a god-awful hormone imbalance and my current APS? or, as you suggest, the mono and the APS?

Do you really have APS and MS? Or (I hope, I hope, I hope) was the APS mis-diagnosed as MS?

miley profile image
miley

yes is the answer to your question, I was told that I had M.S. well over 20 years ago and my MRI scans confirm this my scan are used by my head nero for before and after beta my injections and I am sure this is correct the APS has only joined the party this year after my back op.

MaryF profile image
MaryFAdministrator

Hi there yes glandular fever is very connected with autoimmune disease, even thyroid troubles. I had it when aged 7, I have 5 autoimmune diseases now including APS>

members.shaw.ca/tiderington...

and this one a little 'wordy' but nonetheless very relevant: cid.oxfordjournals.org/cont...

Mary F x

tess42uk profile image
tess42uk

I have thyroid trouble and diabetes as well as APS, 3 pregnancies, 2 survived but had severe pre eclampsia with first and third baby died due to me having severe pre eclampsia, I have never really been well since that experience 9 years ago.

soul22 profile image
soul22

Hi yes for lupus aswell.they can all intermingable.i have cross over of several auto immune problems lupus,raymaunds, etc.i now have.mines all together called undiffertaited connective tissue discease.

CanaryDiamond10 profile image
CanaryDiamond10

That streptococi B germ is a real mean warrior! At age 7, the three children in our family caught Strep. My brother and sister got better, but due to allergies to most antibiotics, I did not. It morphed into Scarlet Fever. I was kind enough to give it to my brother and sister who both bot better in a month, but I did not. I had it 2 years. At age 12, I had terrible trouble with menstruation and would be "down for the count" for 10 days a month. At age 14, I caught infectious mononucleosis. Again, beging allergic to so many antibiotics, this was prolonged for 2 years active. Then Rayanaud's. I was delighted to go to Prom at 88 pounds and a lovely shade of yellow. Shortly thereafter I caught Rheumatic Fever. This was a very severe case which was active for 5 years and was unrelenting pain for it's duration. This brings me to approximately my mid 20's. I was married and had numerous miscarriages. We went to the state of the art hospital for sterility at the time approx 1973-5. They could not give us a reason for lack of successfully carrying a child and suggested we adopt. We divorced. The very first partner I had after that concieved a child. Since this was quite a surprise to me I waited for the inevitable miscarriage. At 7 month gestation, I contracted thrombophlebitis and was put on total bedrest for the rest of the pregnancy, which incidentally lasted 10 months and an emergency cesarian section for an 8 lbs boy. Four years later (never having used a contraceptive) we concieved and carried a 5 pound little girl. Both babies were billirubin babies. I had about 10 "well" years. At least - the least symptomatic I could remember. Then I began passing clots. I went blind for approximately 3 minutes at work. My instinct was to stand perfectly still and wait. My sight came back and as the days went by I progressively grew more and more tired. Then one night I bent to pet the dog and had the most severe headache I could imagine. My father having a history of CV's, we went right to the hospital for an MRI. It was a stroke. Ten days in the hospital and they diagnosed Central Nervus System Vasculitis. A few years went by in horrible treatment of 80 mg of Prednisone followed by chemo (Cytoxin which gave me bladder cancer currently). After that came a "fibromyalgial-like" condition.

I believe every single one of these diseases can be traced to that original wicked streptococci B germ. It just morphed and hid and morphed and hid. And is STILL doing it.

So yes, GinaD, one can have more than one autoimmune disease at a time.

miley profile image
miley in reply to CanaryDiamond10

boy, your amazing what a fighter, I also carried my son for 10 months placenta preva normal delivery 9.13, now 6ft 5, well worth all the bed rest, daughter 8.13 lucky me two beautiful children. adults now and proud of both, just hope none of this silly illness passes on.

CanaryDiamond10 profile image
CanaryDiamond10

Excuse me, I did mean Miley.

mickt profile image
mickt

vitiligo ,type 1 diabetes ,addisons disease,Acchalasia of esophogus auto immune linked required surgery.Symptoms large vessel vasculitis,Polymyalgia rhuematica and giant cell artiritis .Now prob APS.Been off work 6 half months now occ hth suggesting office job im a manual worker on shifts.ill health retirement been suggested ,comp doc says im not fit to do current job.

Please have a look at the poll set on HU earlier:

healthunlocked.com/hughes-s...

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