Some of you will know I have been waiting for appointments and results from tests etc. Today I received a letter from the Rheumatoligist who I saw in Feb (I haven't had a follow up apt yet) and the result from the MRI scan on my brain. It reads:
'Just to let you know that your recent MRI scan showed no evidence of Infarction. Small scattered white matter hyper-intensities were seen, in keeping with mild small vessel disease.
There was an incidental finding of mild fluid in the right mastoid air cells and also left maxillary antrum but nil else noted.'
He goes on to say I will be seen in the clinics at the Rheumatology and Neurology departments but my MRI scan is mostly within normal limits, which should be reassuring' ????
I did receive a phone call from someone else at the hospital who told me no strokes/Tia's showed on the scan over a month ago then got this letter today.
I have not seen a neurologist yet.
I have sat here for over 5 hours since the letter arrived in a state of confusion and shock. I am trying to find out if I have APS. I have given 4 positive blood tests for Cardiolipin M. There have been a host of issues over the years, hence the MRI scan on my brain. I have the feeling from what as been said already by the Rheumatoligist that he doesn't think I have APS and will have to wait until my appointments come through from both clinics.
I was told last week that my follow up was in December with the Rheumatologist so I complained. An apt will be brought forward I am told (I would of gone mad otherwise)
Was anyone else diagnosed with Hughes/small vessel disease in the brain?
Would small vessel disease point towards Hughes?
I know you cannot give diagnoses but any help/advice would be good.
Thank you in advance.
Kind Regards
Bernie x
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crista1
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Thank you very much. I didn't see someone who specializes in APS although I asked to see the specialist in M/C who does who I got off the website, but ended up seeing someone else. I was very disappointed. I am due to see my G.P tomorrow and will discuss about seeing Prof Hughes at St Thomas's maybe.
Hi, shame you did not see the right one, you can't see Professor Hughes at St Thomas's but you can see him or one of his team at The London Lupus Centre/London Bridge Hospital, he works there privately, but do get all your blood tests done by GP, including Thyroid function, iron, b d etc etc. However maybe your next appointment with GP will yield something.
It is really sad, that you asked for somebody off the list, which would of course save your area money, being sent to the correct specialist in the first place, I do suggest you ask the GP to specifically ask for that specialist. If you do get nowhere you can self refer to London Bridge. MaryF
I will discuss tomorrow with my GP. I keep thinking maybe I'm worrying to much, then thinking well maybe I'm not. We'll get to the bottom of it. Do you think I can ask to see the APS specialist for my follow up or do you think that's a bit unethical and should wait until I've had my follow up and ask to see the specialist then?
Make sure your GP has the link to the Hughes Syndrome Foundation charity website, write it out for them, and let them know there is a list of suggested NHS specialists on there, just ask their opinion. Explain you had thought you were being referred to them. One step at a time. MaryF
Hi Mary. My GP feels maybe I should wait before I go for a second opinion, although I am going to contact London Bridge next week. I haven't a follow up apt yet with the rheumatologist or an apt with the Neurologist. Its hard to be listened too, but I'm going to persevere!!!
Ok, if you have to go back to the two mentioned above, just collate your information together and the link to the charity, in the mean time, at a later date you can your self referral to London Bridge if not happy. You will probably have your GP's attention more now. Best wishes. MaryF
I can certainly see some of me in the article, thank you for that.
The test's that were positive were the Anticardiolipin (positive 4 times) highest was the 1st one at 78, then in the 40's and the other two in the 30's. Rhuemy one was borderline, although told in my 20's that I had wear and tear in my right arm. On/Off pain in this arm. I think I have listed my history in the past.
I'm on no meds and maybe the doctor won't think I need it. I'll wait for my two apts with the doctors. But will also look at referring myself to Prof Hughes if I'm not happy.
Well, I'm not an expert at looking at MRIs but I was shown a small area of white on the scan and it was reported in the letter as being typical of 'age related small blood vessel disease'. Mind you one neurologist said it was a small 'silent infarction' while two others said it wasn't!
Hi Jenss. My letter says small scattered white matter hyper-intensities were seen, in keeping with a mild small vessel disease. Each person's MRI will be different, with different areas being effected. Hopefully I will have my apts soon and I will find out more. Bernie x
I was initially tokd I have small vessel disease from an MRI plus an infarct. Then the neurologist spoke to the Trust thrombotologist who suggested some blood tests. These confirmed APS.
This was 8 years after a stroke (when I was 31). Am now on lifelong warfarin.
Thank you Bonnie39. I will find out more when I have my follow up with the Rhuematologist and 1st apt with the neurologist. The Rheumy said that although I have tested positive for Cardiolipin M 4 times it does not mean I have APS. That was before the results came through from the MRI scan. But again I will learn more with my next apts. Take care. Bernie.
Not on any type of medication. I have all the same symptoms as you plus others. I bruise very easy, blood blister occasionally appears on left side of head, eye sight effected, sight as gone on occasions (sometimes both eyes, other times just one) migraines, headaches, hearing not good (two different noises which are constant in my left ear) constantly tired no matter how much sleep I get, aches and pains, wear and tear to right arm diagnosed in my mid 20's, I'm now in my 40's, (told by my GP at the time I would be in a wheel chair by the time I was 30, this as not happened ), I have problems with my digestive system, my mood is low most of the time, and my memory is shocking!!
I am due to see my doctor this afternoon and will discuss my concerns and ask about a referral to London Bridge Hospital. Thank you and take care. Bernie xx
Good I am glad you are seeing a doctor today, I am not sure if anyone else has said but if you can print off some information from the Hughes foundation web site.
Mary or one of the other administrators will know which one is best,
Small vessel disease on brain MRI is a frequent finding in APS and probably represents micro infarcts. If you have several positive APS antibody tests no matter what the level you almost certainly have APS. You don't say what your issues are, but if you also have headaches, trouble thinking, word finding difficulty, balance trouble these symptoms would almost certainly respond to the right combination of anticoagulation and/or anti platelet therapy and this at the same time would very likely reduce your risk of stroke. I would push to get in to see an APS specialist asap if you do have these kind of neurological symptoms. Many neurologists are not aware of these manifestations of APS, sadly. Worth it to see Prof Khamastha or Hughes at London Bridge as a one time consult if needed so that you are sure you are getting the right advispce.
I have had 4 positive ACL blood tests over the last couple of years, yet the Rheumy consultant said on a letter from Feb ''We already know that her anticardiolipin has been elevated for a long time, but again that does not mean that she has any anti-phospholipid syndrome'. Confused.
I have all the things you have mentioned. I am very forgetful, fall over to the side and even feel like I fall over to the side when I am sat. I get my words muddled and if I am interrupted mid sentence have to be reminded about what we were discussing. My sight as gone a couple of times, in both and just one eye at times. My hearing isn't great and I have 2 different noises in my left ear which never stop (for over 10 years). Bruises appear for no reason, a blood blister appears on my left side temple always in the same place which as been ongoing on/off since my teens, this is accompanied by a dull ache (I'm 47). I've had mini fits and blackouts on/off since I was a young child (in hospital for 3, parents told I had a thin skull?)
Will hopefully get to see either of the Profs in London.
I was diagnosed APS positive in 2001 whilst visiting St Toms for my usual Lupus apps. Since then my symptoms have gradually increased and subsequent M RI's have shown on the reports, small vessel ischaemia consistent with APS. My consultant wanted the MRI done at St Toms as they said they preferred their own people reporting on what is found so it seems it's important to have people who understand the disease doing the reporting. There was quite a lot of white matter and my Clexane has been increased to cope with the symptoms and hopefully keep things under control, so finding a specialist does seem important, hope you manage to get the help you need.
Hi Nonny. Thank you for replying. So far I feel I haven't met anyone medical yet who knows much about APS, hopefully that will change. Glad your getting the right support and treatment. I'm hoping to go down to London Bridge to hear from an APS specialist yes or no I have APS/Hughes, that way I'll know I have been seen by the best and right person/people.
Hi Lure2, apologies for gap in reply, am on holiday and only connecting every now and then. Yes some of the neurological symptoms have improved and I no longer experience the permanent life limiting headaches and my memory is no worse but on a recent visit to my neurologist he referred me to my rheumatologist at St T's for an earlier appt as he feels things are still not under control, tremors, balance, mouth ulcers etc so I am due for a visit when I get back. I very much appreciate the treatment I get at St T's although I have visited London Bridge as well and found them very knowledgable and very helpful.
Hi Back in 2012 when I was 41 I had an MRI which showed white matter hyperintensities and was told that this was normal for my age and that was about it. Tested positive for lupus anticar (can't remember the rest of what its called) and positive for something else I can't remember. Taken off warfarin and am now on aspirin 100mg per day. I get confused as to these white matter hyper. with different ideas as to them being 'normal' and now reading that they are small vessel disease? Could someone enlighten me please
Hi Kimmac42. I'll probably be able to tell you more once I've seen the consultants. I'm baffled at the moment. They can be associated with age plus a host of other conditions also. I think they can sometimes show if you have APS. When you tested positive could it of been you tested positive for the 'Anticardiolipin antibodies?'. There are a number of blood tests that can check for APS.
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Back in 2012 when I was 41 I had an MRI which showed white matter hyperintensities and was told that this was normal for my age and that was about it. Tested positive for lupus anticar (can't remember the rest of what its called) and positive for something else I can't remember. Taken off warfarin and am now on aspirin 100mg per day. I get confused as to these white matter hyper. with different ideas as to them being 'normal' and now reading that they are small vessel disease? Could someone enlighten me please 
APS - Foggy and confused.
MRI scan
EEG examination with difuse findings
