Hello, This is my first post and will try to keep it very short. I developed symptoms in February of this year, Balance issues, extreme fatigue (wake up tired and just tired all the time) worn out if I do too much (housework or gardening) totally exhausted generally the next day, Brain fog, difficulty finding words, swelling of what was left of my thyroid (after subtotal thyroidectomy in 2000 (never had any swelling until February this year, it came on with all the other symptoms) joint pain and stiffness and muscle aches and pains and finally a feeling of insects/pins and needles over my Left shoulder on and off and a very heavy left leg.
GP initially suspected MS and after a long wait got MRI of brain showing "a 5mm hyperintense focus in Right frontal lobe subcortical white matter best visualised on Flair sequence- this may represent a small focus of demyelieation but essentially non specific as an isolated feature"
Second MRI 3 months later showed slightly more lesions but was told that it was not MS ? muscuolskeletal problems
MY past medical History is
Scarletina and Rubella within a short space of time as an adult, not long after I developed a swelling in my neck which turned out to be a goitre and had 90% of my thyroid removed.
1 prem baby
4 consecutive miscarriages (3 at 10 weeks 1 at 6)
I had blood tests for Hughes on the 25th of July and have only got results today.......should they have took this long?
GP said they were all fine, what are your thoughts please? reading blood test page on here the 3.4mplu would be a low positive...........am I correct? I really feel fed up and was hoping for some answers after waiting for so long but now feel really frustrated.
Thanks in advance for reading and if you do take the time to respond
Sue x
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bathouse
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My bloods were taken at my local hospital and sent to St Thomas. can not believe it took 6 weeks to get the results and then find 1 of them had insuuficient serum!
Serum Cardiolipin IgM antibody Level (43G8) result was 3.4mplu/ml Ref range 0.0-10.0)
I have asked for a referall to St Thomas on the NHS via my GP tonight, he said he will look into it and ring me tomorrow.............who would be best to see? I am not going to give in easily, even if I am tired!!!
Thanks for taking the time to reply, much appreciated x
My initial test results took six weeks, however the lab lost the anti cardiolipin results. Repeated the tests..another six weeks and anti cardiolipin results were high positive the other two sets neg. Third set of test were taken and another six week wait for same results but antibody levels had dropped although still positive. I started taking two 75mg aspirin per day and that helped with brain fog but only a little.
Thanks, GP says I can have the Beta 2 glycoprotien serum repeated.............Guess I will have to be patient, Why is everything such a fight/hassle when it comes to the NHS, I was left untreated for 5 years after my subtotal thyroidectomy, I only got help by going private, I dont really agree with going private.
Lets see if the referal to St Thomas gets done...........fingers crossed
Hi your history is very revealing, please look at the pinned posts regarding Seronegative Hughes Syndrome, ie you can have it without passing the tests, also be aware that down to the gap in care regarding this very serious issue, some of us take our latest NHS blood tests, printed out and attend London Bridge Hospital for a second private opinion, the tests are the main expense, rather than the appointment. It is clear that you need better advice. MaryF
What is it with lost APS blood work? As I have discoursed here before ( it's a long story ) my initial blood work from 1999-2001 included these repeating cardiolipin antibody tests, results from which were all " lost" repeatedly! And for months!
And now they are lost again so that the most recent hematologist questions my APS diagnosis.
So again: what is it with missing APS blood tests?!
Are positive cardiolipin antibodies drawn into warped holes in the space time continuum?
Hi Sue I have most of your symptoms and also have a problem with my feet and have difficulty walking. Have seen 5 different consultants and had numerous scans and tests and they can't find any cause. I have swelling and oedema but no signs of anything else and they have all come to the conclusion it is to do with Hughes. I am going to St Thomas's in October and I booked it myself through the choose and book system. See if your doctor operates this system and if he does go down this route as I think it's quicker than a referral direct from your GP.
Thanks, I have been referred now via choose and book to St T and they have no available appointments at the moment, it said I will hear from them (at St T) by 24th of September with an appointment date (fingers crossed).
Do let me know how you get on, have you had your blood tests done for hughes?
I wish you the very best and hope you get some answers, its very frustrating to feel all these symptoms, I do feel like I present like a hypochondriac! Its hard to explain how you feel dont you think?
Sue, I have the exact same symptoms as you, so much, in fact, that I am on long term disability and walk with a cane for the balance issues. I understand very much your frustrations. All I can tell you is that keep informing yourself with the help of this forum, the Hughes Foundations Syndrome website and a good APS specialist. I`m still waiting up to 2 years for an APS specialist and have been off work for a year. It is a very long process. We're here for you.
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