advice please

[mully]

so I was diagnosed with sero-negative APS by proff D'cruz with demyelinating syndrome in 2002. 4mths ago I had a stroke I have since been diagnosed with white matter disease However all the APS tests are negative but I have ANA result1:640 and have been referred to a local Rheumatologist here in Cornwall I'm just bewildered now as to what they think I have and if I will be undiagnosed with APS Since the stroke I have a constant temperature muscle aches and excruciating headaches any ideas? what is the relevance of a positive ANA does it indicate lupus? many thanks Jane

[bookish]

Hi, I don't know the answer to your questions, sorry. I'm sure you will get some better replies but I wanted to say ANA indicates raised autoantibodies and can be associated with other autoimmunity (Sjogren's for example, although that too can be seronegative like most AIs), or none, in that it can be +ve in healthy people and can be raised after viruses, infections etc, in the same way that APS antibodies can. I'm sure you will know more when the Rheum has done additional testing. How are your B12 and folate? Best wishes

[GinaD in reply to bookish]

There is so much we have yet to learn about autoimmunity! Our illness is technically called a "syndrome" because we do not totally understand the exact root cause. Which does not mean that all knowledge accumulated over the past 40+ years is irrelevant . But it does point to a correlation, NOT a causation relationship between ANA numbers and APS. So, yes, you can have low ANA and still have APS. But not all doctors are on board with that conclusion. Doctors with experience in treating APS will know that seronegative APS is a thing. Hope you can consult with such an experienced doc.

[KellyInTexas Administrator]

I stayed up late last night and read through your history and journey through the past 10 years.

I did have a migraine and was medicated, so want to do it again, ( it’s morning here, and I’m still in the “post drome” phase so I want to be more clear headed first before I read it again.)

I do want to say though quickly- Prof Hughes states APS can be linked as “ atypical MS.”

Look at this in

ghicworld.com

I just wanted you to know I’ve read your post- and will come back to you when I’m thinking more clearly/ feeling better.

[TwoH]

GinaD is so right. ANA is a valuable tool and in my opinion, is so helpful to get a Doctor to pay attention but seronegative is very possible as well. I have had one positive ANA and I have RA, CNS Lupus and APS. Lupus can cause these types of issues with the brain as well. I really hope you can find someone who will investigate and help you!

[MaryF Administrator]

Hi, you had a good diagnosis from a leading specialist, make sure you highlight that. I was sero neg for Hughes Syndrome/APS and Lupus for years, now I pass tests. Also did some good private tests to prove I had a Thyroid problems and also B12 deficiency, both these cause circulation problems, and low D also adds to extra pain. medlineplus.gov/lab-tests/a... MaryF

[KellyInTexas Administrator]

Hi Mully,

It is my ( non medical ) opinion that you ask your new rheumatologist about the possibility of “small vessel disease” . I have a few questions about this, as I’m not a neurologist.

1. Can it cause demyelination?

2. Could this explain your stroke?

3. Do you have high cholesterol? ( fat clot vs blood clot.)

4. Could this be sneddons syndrome? ( Cerebral APS? ) are they the same thing? There’s a topic for discussion! Dr Paul Holmes ( neurologist in London is to one to ask, snd in my opinion the one you need to see. My understanding is his dance card is pretty full and he’s very difficult to get into- even privately.)

There are a few threads going on that have tangled into a ball, and must be unraveled.

Still doesn’t address the miscarriages. Yet another thread in the tangled knot.

Positive ANA. Does not always exclusively point to lupus. Could be a few of the Autoimmune diseases that fall under the connective tissue family- but again, I have no MD following my name. This needs to be carefully explained to you by a rheumatologist. It’s multi factorial.

As Mary said- can take a while to get consistency in positive APS tests. Mine were spotty- ( my first two were positive) then hit or miss- now consistently positive.

It could be a mix of things.

[mully]

Thank you for all your replies I think I will be undiagnosed with APS as I have been told without 2 positive blood tests I do not have it which would be fine apart from the fact that at the moment I am so ill So I sincerely hope this new rheumatologist can tell me what is wrong and more importantly get me better

[Lure2]

Hi Mully,

I think when I read through your question that I do hope this Rheumatologist is knowledable of APS and also have had many patients like you (I do not mean exactly like you of course) but with probable APS like symptoms. It is a very difficult illness and very alike MS.

Hope you stay with us and try to learn as much as you can as finding the right Specialist may be a real fight. I know what I say now.

Read also "Sticky Blood Explained" by Kay Thackray. She has got APS and explaines a lot of things about this illness from her own experience. A good book. I have it in pocket since several years here in Stockholm. Have you tried to take one Baby Aspirin? Did you feel better?

[Lure2]

Hi again,I am worried about you. I read from old questions you put here 11 years ago. I have read you have been on Warfarin end even selftested some years ago.

I think you have to look for a Specialist as soon as possible who understands this APS and who understands the difference between MS and APS. You should take more bloodtests also and keep copies of everything. Do they still say you have got MS also?

I guess you already have read the book I wrote about. You did not answer my answer to your question.

Important to have a Specialist to ask all your questions to and ask about the bloodtests also. Try to learn about APS so much as possible

Have you seen this new Rheumatologist now? But is he knowledable about autoimmun illnesses and know the difference between APS and MS as to white matters? This is very important for you to get to this Specialist who can help you now after all this time and even a new stroke.