A year ago I had optic neuritis without any previous diagnosis or symptoms. I was hospitalized and treated with complete recovery. The usual suspect is multiple sclerosis which was proved by both an MRI and a lumbur puncture. So you might be wondering what I'm doing in an APS community...
At diagnosis I had a positive test for lupus anticoagulant. The hospital told me to visit a rheumatologist which I did... She was a very rude doctor, supposedly a good one... She told me I might have a rheymatic disease like lupus or aps and she insisted on it. Had me tested for everything which came back negative, even the lupus anticoagulant. After another retest, everything came negative but this time the LA was positive again. Now she says I don't even have MS and it's APS with symptoms that look like ms. Is it possible to make such a diagnosis without any APS symptoms? All the other antibodies are negative, all of them in multiple exams, 6 months apart from each other... Never had a heart attack, DVT, PE, I am male so no miscariages. She has made my life a living hell, cause I don't know what to believe any more. I'm not asking for a diagnosis over the internet, just if anybody had a similar experience or if this sounds logical to people that do have APS. Thank you very much in advance and I wish you a life of remission
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As per Dr. Hughes APS can mimic MS but usually in these patients the lumbar puncture is normal. I was missdiagnosed with MS before my APS diagnosis. However, your case seems to be a typical presentation of relapsing MS. The shape and position of your brain lessions could also help to distinguish between the two diagnosis. For example, mine are atypical for MS. Good luck!
Thank you for your response! May I ask what were your initial symptoms that made then think you might have ms?- yes, my lp showed both oligoclonal bands and the proteins usually found in ms. So confused...
No need to thank. We are here to support each other. Brain fog, vision problems, weakness in lower limbs were my initial symptoms. They come and go. After extensive testing doctors only found white matter lessions on my brain. However, the lessions were not typical for MS. Lumbar puncture was normal. We decided to start treatment with a possible MS diagnosis. I did not respond to the treatment, and when my livedo reticularis appeared, well, my disease was suspected to be of vascular origin and they tested me for antiphospholipid antibodies. I am also only positive for one of them. I am on anticoagulants now and some of my symptoms have improved.
I am sorry that you had to go through all this to get a proper diagnosis. I hope you are doing much better! My MRI was a bit atypical but on a follow-up I had new enhanced lesions and they were textbook ms lesions, but my neuro wanted to know why I am LA positive. I have a long way I guess :/
Thank you! I am doing better although not in remission. Every day is different. Enhanced lesions are not typical for APS patients with brain manifestations. I never had one in my multiple MRIs for example. MS looks like the right diagnosis in your case but you might still have APS in the absence of clots and with the presence of LA. You must look at the non-criteria manifestations of APS to see whether you have any of them.
There can be confusion between MS and APS but it’s also not unheard of for people to have both instead of one or the other. I find it difficult to understand though how it can be confirmed via scan and LP and then have it retracted. Having said that many APS patients get their dx retracted too by very opinionated Drs so as you say it is very confusing and no help to you.I’d advise finding a good APS specialist whose main practise is APS. There are also one or two good neurologists who understand both but you would have to go to London if you are not in that area.
Your not the first to find yourself in this situation I’m afraid so try and be patient you may have a long journey in front of you.
Thank you for responding! It's so frustrating because I've lived an entire year believing I have ms and got comfortable with the idea, especially after having LA negative the second time. I'm already searching for a better rheumatologist and get another opinion. I do live close to the UK so it is good to hear that! Thank you!
Thank you so much for the support! Everyone in here is so kind! I will definitely see another doctor ASAP because I feel like I am getting nowhere with this one. I discovered I had an attack of Lhermitte's sign back in 2019 (I just thought it was a neck problem and was resolved after a week) and I read it is an MS attack but I can't find this happening with APS.
Yes I had eye issues 1991 ago nearly lost my sight and was diagnosed with SLE but had years of nothing. Then a few minor issues in 2007 achy joints. Then 2016. I was diagnosed with MS to be re diagnosed the same year with APS lumber puncture and brain lesions lead to this diagnosis
From my point of view be grateful of the diagnosis I am now 62
2016 there wasn’t much help for me. Only Aspirin
I went on to having a leaky mitral heart valve 2 damaged arteries which lead to open heart op in 2019.
Then 2020 I had my right kidney removed 2lesions on my Ureter
I am relatively fit slim and healthy last person you would think this would happen to.
My neurologist said they have made great discoveries in medication since 2016 as I am still not good with lots of diverse symptoms which are hard to explain . I am now hopefully going to start an MS type of treatment called BCell therapy I. The not to distant future.
Listen to this long Covid link and 3 UK doctors are experiencing many of my years of symptoms
I must tell you I was very nervous due to my blood clotting issues to take the Covid vaccine but I did it 2 doses of Pfizer . I am still here with no effects. Hopefully I am more protected now.
Read listen and learn it’s a horrid diagnosis
Only you can navigate through it.
At least it isn’t cancer is what I say to myself. With good care and awareness you might just get through without all the stuff I have gone through.
I take Aspirin daily warfarin (high amounts which fluctuate) Blood Pressure tablets too. I hate it but it keeps me alive and relatively normal
Thank you a lot for all this useful information! I had my moderna covid vaccine a few months back and thankful didn't have any problems with it. Thinking that there is worse in life is a mechanism that helps me cope too, but anxiety and confusion came back since I had already accepted an ms diagnosis and lived with that in mind through an entire year. Now I don't know what is and what isn't... I feel like I have MS and not APS but the rheumatologist made me doubt everything. I will visit another soon. Thank you!
I read you have many helpful responces . I will only add that before my migraines slowly morphed into mini strokes my excellent eye doctor suspected APS based on "something I see on your retina that I don't like."
thank you for responding and I hope you are doing great! The opthalmologist spent literally hours looking at my eyes with his machines because he was trying to understand if there was an ischemic reason behind my neuritis but couldn't find anything other than inflammation, which makes my confusion even bigger.
Hi, sometimes people get a diagnosis of MS prior to Hughes Syndrome/APS, or even Seronegative Hughes Syndrome/APS or Lupus, this happened to me the seronegative diagnosis, however I do past tests fairly regularly these days. Also it is important with autoimmune disease to be looking at levels of B12, Folate, D, Thyroid Function and Ferritin alongside the other tests like inflammatory markers. B12 is also sometimes implicated. I have three different friends with MS, all had low B12 and low D. This is a useful read, autoimmune conditions can gather together and deficiencies are not uncommon. journal.opted.org/article/v... MaryF
Hi, APS and MS can have very similar symptoms.I got optic neuritis around 30 years ago, a tell tale sign I found out over the years.
I got checked for APS back in 2007 and it turns out I have both APS and MS. It may be a good idea for you to see a different doctor because the one you mentioned doesn’t sound nice, just like every neurologist I’ve had to encounter.
Hi I wonder if you still have neurological symptoms. They say that a MRI between MS and APS may differ as to the white matters. I had also a lot of neurological symptoms from the beginning before I started Warfarin. I have APS and live in Sweden.
It is true that the Neurolgists do not understand that APS is about too thick blood that has to be thinned.
I also had a Neurolog from the beginning but when I had Amourosis Fugax on my eyes she was suspicious and said that I should try Aspirin. They did not discuss MS but migraine in my case. I now use Warfarin since 2012.
There is a very good book to read about APS called "Sticky Blood Explained" by Kay Thackray. In the first book she tells about her neurological symptoms expecially with her eyes. It was exactly like my symptoms.
If you still get neurological symptoms you could perhaps try a Baby-Aspirin. Take it with food. A small amount of 75-100 mg is enough per day. It may help if you have microclots. APS-patients often start with that, followed by anticoagulation if needed.
Good luck and only get Specialist-Doctors. Even eye-Doctors sometimes understand APS-symptoms.
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