I am getting to the end of my tether with the entire medical profession I'm sorry to say. I am 69 and todate I'm so complicated not one doctor has actually made the correct diagnosis. My mother gave me Psoriasis PsA Scoiliosis and she had Colitis. My father had flat feet and gave me PCOS and he had Crohn's. I was a wobbly sick kid who lost over 4 years of state education but wanted to be a doctor. Unfortunately that didn't happen but I did make it to Cambridge in the 60s. Then I worked in medical underwriting. We had 5.5 children the .5 was killed by a GP OD, then our adopted son, then Robin who was a cot death, then came babies 3&4 and finally on the pill 8 years later came 5! I have had far far too much progestogen for a hypermobile person. If I ever hear no again I think I will scream! It's been yes you have Sjögren's no you don't. Get the picture? Finally diagnosed with Lupus by a skin consultant then upped on MTX until I was injecting 25mg. Then I was told I was a waste of clinic time. I nearly died. Then back on MTX injections finally in order to get to the bottom of this last year I went to UCH to be told of course you have Lupus. But no consultant says I have only Sjögren's no POTS and certainly not Ehlers Danlos. Phoned secretary oh my consultant is an EDS expert! Well that's good, my goodness what a quick learner as I only gave the books the previous week. So why I ask am I going for a genetic test for a disease for which there are no drugs, I was told? Of course there are drugs but I'm getting so cross I'm tempted to never see a doctor again. With private health and ignorant Consultants I'm now a cripple. Sorry folks for the rant but I'm really end of tetherish with numerous homogenous ANAs what else have I got?!

17 Replies

  • My journey is so similar and I'm nearly 69. I do hope the DNA proves one way or another. I keep pressing for one without success. Over the years I've been given a diagnosis only for another medic to take it away. Oh so many times has this happened.

    I am determined not to give up and please don't you either New47. 'M'

  • Thank you

  • Thank you I will tell you all when I get the results. I'm %100 of the EDS type but whether I will ever get an upright MRI to prove the possible Chiari I doubt. There are so few in the UK and most are private.

  • I will let you all know. They were certainly very interested in me. I have such a complex medical history that bloods going to Austria, bloods in the U.K. and urine. The latter will take 2 months. I have had 320 homogenous ANA 160 homogenous ANA then 2 homogenous ANAs on MTX in 2012. Then up to UCH last year to be told of course you have Lupus but this was not in writing. This year CRP bouncing about and finally to geneticist last Tuesday as they were horrified as what I have been subjected to. 69 years of total misdiagnosis and a cot death.

  • Hi, I'm 64 and similar journey with doctors not able to diagnose. I did eventually find a hospital that had a bit more about them and did get diagnosed but only 5 years ago. I had my genetic tests come back last month. They also Gave me some answers.

    I completely understand your frustration- as im now more aware of the limitations of testing. It doesn't help that our bodies are so complex!

    Take one breath at a time, one day at a time and hopefully those diagnoses will come your way.

  • Thank you, did your genetic tests help or make the situation worse? That is the one thing I'm dreading as I have 3 sons. One has Psoriasis and is a doctor, 2 has just become a father 3 Is still young and thankfully I know his problems.

  • Made things much easier, well worth doing! No one can fob me off anymore - Iv got proof that my body doesn't work in specific ways. Also able to match diagnosis with which faulty gene. Fab! I'm going to get it done for my grandchildren. They are putting the price up from £125 to £149 on 29th September next week. If we can find enuf money will order two then you get 10% discount. So saving nearly £40.

    Don't hesitate - do it!

  • I LOVE this photo of young you....am I right in imagining that gorgeous determined young girl is still vvvvv much alive in you: your post is so VITAL, I sense her in there despite the long drawn out ordeal you're enduring: 👍👍👍👍

    Am so glad you're here, new47! Thanks for your wonderful post

    My version of this is somewhat similar...but involves a lost infant onset lupus diagnosis....which finally got recovered in my late 50s thanks to the insight of a brilliant Cambridge rheumatologist. I'm also vascular EDS + coping with early onset PID (primary immunodeficiency). 5+ years on from starting the diagnostic & treatment process, I'm feeling more stamina & resilience + less pain than I have since my early 20s....this is thanks to great diagnosticians at all my multisystem clinics who have pretty much figured out all my secondaries.

    Am now conscientiously running a super duper bunch of multisystem combined therapy treatment plans: they all are really helping minimise the h**l my lifetime of cumulative damage caused by the progressive effects of inflammatory process going without daily systemic treatment....+ the h**l of mistaken, even negligent and certainly deeply disturbing approach the system took to my care during the 40 years it took to finally figure the causes underlying my debilitating & emergencies

    So, am choosing to feel as cautiously haha optimistic for others as I've discovered I could've been for myself....before my brill Cambridge diagnostician began to figure me out in 2011, I'd had all hope bashed out of me by deplorable attention from the system inc all the wrong meds given in silly ways & ridiculous diagnoses. Thanks to lupus uk, this forum & True Detective Medics, I've got my life back....can stand & walk again...and am even taking short hikes in the mountains again

    Please let us know how you get on....we're all beside you

    🍀🍀🍀🍀 coco

  • Coco that's what I'm dreading not for me but for my sons. I have agrogeria and hypermobile feet, my first son was a cot death who presented Deep Transverse Arrest, son 2 was normal with massive PPH son 3 deep transverse massive PPH son 4 normal with split cervix 3rd out of body experience with a tidal wave of PPH so I'm a bleeder alright terrible nosebleeds as a child. I have been diagnosed with Lupus twice but still I'm not being believed. If I had know I would never have had children. However at 69 and 1 adopted son and 3 natural sons that is now my fear the other possibility is Chiari as none of my boys are wobbly. I have hated going down hill all my life. But the most hypermobile has no problems and neither of my parents had this problem either. On the bright side I have had so many enormous operations I doubt if I had 4 I would have survived!!! 😎

  • 🌟🌟🌟🌟👏👏👏👏You are some woman! Am taking my hat off to you, and bowing way down low! I can understand your concerns for these dear ones....am greatly feeling for you all

    We tried for children, but by then I couldn't imagine how my health probs could mean I'd be anything but a failure as a mother...so my infertility was almost a relief (I'm a DES Daughter: exposed daily inutero for months to the notorious artificial oestrogen DES (diethylstilboesterol), which gives us internal reproductive organ defects, endometriosus & rare gyn cancers etc etc). I so admire all of you mothers here on forum

    Am glad you've found us


  • You have an amazing encyclopaedic knowledge of sjogrens.

    I was diagnosed with sjogrens and not a word has been said about it by any medic. There's heaps missing in my lupus etc knowledge too.

    I was so nauseated during my pregnancies they tried to put me on stilboestral- when I queried them, (this was not too long after thalidomide) they said it was fine! However, I was very allergic to it and only had it for cpl days.

    I would really like to put everything you've written into a book or pamphlet. I'll give it to my dr's and Rheumy!

  • YIKES: Linda you're one of the vvvv few I've met with any experience or knowledge of DES 👍👍👍👍

    😆 Gosh: and I feel as if I'm only just beginning to get a feel for these subjects...certainly putting stuff into words here & reading others' contributions is VVV important to me 😉😘🍀

  • I think that's probably it. You are very well able to put fairly obscure stuff into words and sentences that we can understand.

  • 🤗 I am trying for that....and lately my consultants are all nodding 'yes' at my interpretations...two things I'm allergic to are pseudo-science + know-it-all-itis: both of which I think most of us here are on guard against 😏🍀

  • New 47 - I don't know what it is about Doctors and Sjogrens and Lupus! I can't get any of them to say what I have and yet they have put me on Hydroxychloroquine and I feel heaps better. I know by researching and going on this website and the British Sjogren Syndrome Assoc what I have. The symptoms of these conditions are so varied but you must by now know. Don't get a name - just get the right drug. I was told by a Rheumatologist just today that my eyes weren't very dry - like I was exaggerating. It is a very odd way to treat people. I get downhearted too, but I think all you can do is plough on. Have you asked to be referred to St Thomas' Lupus Clinic? It is your right and they are the experts. Good luck Cas70

  • Oh I'm a BSSA member I have been for years. I'm certain I have Lupus as Sjögren's won't cause a cot death. Your on the correct drug Hydroxychoriquine for either so try not to worry about what you have.

  • Thank you I'm sure it will. I will of course let you all know. I'm really finally getting somewhere. There is little that the medical profession can do to help me, but if my knowlege help those in the future that will be wonderful. From a little girl who wanted to be a doctor but didn't quite make it as I lost over 4 years of state education, to a prematurely old crippled woman who still has a medical brain somewhere.

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