Maybe not APS after all

[Greenmil3]

As some will know I was diagnosed with cerebral APS approximately 2 years ago at Guys Lupus unit. At my last appointment as I am not responding to warfarin or hydrochloroquine Prof D’Cruz thinks it may be a misdiagnosis. I am still lupus anticoagulant positive but my white matter lesions have increased dramatically compared with my previous MRI. I am now being referred to Neurology at Guys Paul Holmes to see what he thinks. Prof D’Cruz is also bringing my case up at the next haemo / radiography meeting to see what they all think. It’s extremely strange having had a diagnosis then just about coming to terms with it and then having it taken away and being back to square one.

If I do get a firm diagnosis of something else (thinking prob MS) after the next barrage of tests including the lovely lumbar puncture then I will come and say goodbye. I just wanted at this point to say a huge thank you to all that have given me such amazing support.

Update to follow you will all know when I know!

[HollyHeski Administrator]

Hi, before we say goodbye, let's just wait until these two very good doctors get to the bottom of things, it must be strange getting your head around it, sounds like Prof D'Cruz can't get his head around it either, he doesn't like or understand either, great that he is asking for others to view.

[Lure2]

What cerebral symptoms did you have when you were tested for APS? You are positive to Lupus Anticoagulant.

I think they can see on the MRI if it is more MS than APS as to the white matters location in the brain. I think I have read that somewhere. Ask about that.

[Greenmil3 in reply to Lure2]

Thanks apparently there is another letter from Radiology following the meeting apparently they suggest INR 2-4 for 6 months! Obviously they didn’t notice I’ve been above 3.5 for the last 8 months

[Lure2 in reply to Greenmil3]

I have never heard of that range 2.0 - 4.0!! Who suggested that range?

Are you Lupus Anticoagulant positive? I wrote you are but you did not comment on that.

What cerebral symptoms did you have when you were tested for APS? What have they said about the white matters location in your brain. Is it possible to see a different if they change or not after a couple of MRIs? That would be interesting for you to know perhaps.

Also I wonder what your GP says about that level (an INR of 2.0 - 4.0)? You have been over an INR of 3.5 for the last 8 months!!

[Greenmil3 in reply to Lure2]

Lure it was at the conference between radiology haematology and professor D’Cruz when professor Beverley Hunt from Haematology suggested this INR range for 6 months. Radiology and Professor Hunt then agreed the white matter lesions were ischaemia (prob spelt wrong). My symptoms range from severe memory loss, speech issues, balance issues, cognitive issues and behavioural changes to pins and needles and various other nerve feelings in various parts of my body. My issue with this is ischemia to the brain is caused by blockages so strike or mini stroke but as far as I am aware don’t have these and never have! Plus as you know my INR range has been between 3.5-4.0 for the last 8 months. I am seeing Dr Paul Holmes on the 30th so hoping for a little more clarity.

[MaryF Administrator]

Hi you are not the first to be in this confusing limbo, you are positive for L.A, so that is one clue, however it is great that there is more investigation going on. Often sero negative patients get caught in a diagnosis conundrum also, I had this a while back, but actually I started passing tests later on. It is ok to be on more than one forum, so do feel you can stay if you are not sure. I enclose this for you, and I hope regardless of the path taken by your medical team, that you continue to have regular testing to keep an eye on your particular case: ncbi.nlm.nih.gov/books/NBK5...

MaryF

[Fra22-57]

I have cerebral APS.I was led to believe mine could be ms at beginning as symptoms are so related.the warfarin has not helped me either so when I go to Guys again next year I will see what is said.I wish you luck.try and stay positive

[jessie68]

I had the same many low to medium positive results. I was given fragmin for nearly three years. Out of the blue I suddenly don't have it. I also have small vessel disease due to APS. Please be careful of the change around, they are telling everyone now their titres arnt high enough to be APS. Its another scam by the NHS to save money. My G. P and neurologist are fighting to have me treated. How can you test positive then suddenly you no longer fit the criteria, APS is not curable X

[Greenmil3 in reply to jessie68]

No it’s not curable but on Warfarin my brain should not continue to deteriorate the way it is as I should get no more clots hence it’s not micro clots killing my brain.

[jessie68 in reply to Greenmil3]

I had the same torn between MS and APS. I was told by Dr Khamashta that they are so similar but you wouldn't test positive to APS if its MS. Also some people are unlucky enough to have both x

[Greenmil3 in reply to jessie68]

Prof D’Cruz thinks although I am positive lupus anti that I may be asymptomatic for APS and it’s something more neurological

[Stereolover in reply to jessie68]

I have both apparently. This is going to confuse me for the rest of my life. Good luck

[Lure2 in reply to jessie68]

Hi jessie68,

I read that it was 4 years ago that they believed you did not have APS. You had then taken Fragmin injections for 3 years (!) and you felt better (!) on it.

I wonder what anticoagulation drug you are at now and what symptoms you had BEFORE you started Fragmin and had your diagnose of APS?

What symptoms from APS do you have today?

[jessie68 in reply to Lure2]

Hi Lure 2

I have tested positive everytime in clinic but they are saying the levels aren't high enough to fit the new criteria. I'm left with constant headaches, pins and needles, joint pains and memory loss. All seemed to improve dramatically whilst on Fragmin. I'm now left taking just aspirin daily which doesn't work x

[Greenmil3 in reply to jessie68]

Jessie

Insist on a referral to Guys hospital if it’s near enough as you shouldn’t need to suffer like this.

[jessie68 in reply to Greenmil3]

Hi

I've already been under Guys. When Professor Khamashta left a lot of his patients suddenly were discharged I'm not alone sadly x

[Greenmil3 in reply to jessie68]

Try phoning the lupus clinic and explain how your symptoms have got worse and they may give you another appointment to go back in.

[jessie68 in reply to Greenmil3]

My Gp is fighting my corner so hopefully they will see me in the new year x

[Greenmil3 in reply to jessie68]

I hope and pray you get sorted x

[jessie68 in reply to Greenmil3]

Thank you x

[Lure2 in reply to jessie68]

Did you see Beverly Hunt 4 years ago?

'You must insist on having help as you now get symptoms after your had to leave the Fragminshots.

As to prof Hughes that is the proof that we have APS and in need of anticoagulation as not even Aspirin is enough. He sometimes did a trial a couple of weeks with LMW Heparin to see if the symptoms eased or disappeared.

Was it a long time ago that you had all the three antibodies tested again? We are all different with this illness and antibodies come and go. A knowledable APS-Doctor whould know that.

Please tell the GP this who is fighting for you also!

[jessie68 in reply to Lure2]

Hi last time I was in clinic was last year and I was still positive. I was sent by Dr D Cruz to see Dr Breen so that she can find a safer alternative to Fragmin. She straight away said I don't have APS and I only had two positives. Luckily I went armed with copies of tests results sent to my G.p showing all positive. She looked really embaressed but then went on to say they are not high enough to reach the new criteria. She couldn't deny the damage to my brain also as I had copies of scan results. She just made excuse after excuse and I ended up leaving in tears. I really don't like or trust her at all. x

[Lure2 in reply to jessie68]

Hi again,

Good that you have copies of everything!

I do hope you will find a Doctor who knows our illness. It is a fight really.

Do not give up, please! I do not understand why prof D´Cruz could not find a good alternative and that he sent you to that "Dr Breen". I am sorry for you as the correct anticoagulation is so vital for us.

Good that also your GP is fighting for you! I wish you Good Luck!

[jessie68 in reply to Lure2]

Thank you so much x

[MaryH]

It is difficult to get your head around APS without all this extra worry. My heart goes out to you, I was diagnosed in 2006 after a stroke, I also have white lesions in my brain but I do not think they have got larger, I have had two MRI.s but nothing for a while. I react to warfarin but just lately it has got a little haywire and my dose dips and dives, I have just got a months appointment but we shall see. Iknow this is not helping you very much. If it is MS then there is a lot of advice out there and people seem to know more about it than they do APS. I shall look forward to hearing from you. I wish you well, we are all in the same boat and I shall be with you all the way, if only in my prayers. Love Mary H xxx

[Greenmil3 in reply to MaryH]

Mary that is so lovely thank you so much x

[Yllek]

I hope you get a firm answer soon. Dr Holmes is my Dr and he is fabulous - not only a great Dr but a kind and caring man. Do you have your appointment date through yet?

[Greenmil3 in reply to Yllek]

Yep it’s an urgent one 30th December

[Yllek in reply to Greenmil3]

I’m glad you’re seeing him so quick. I see him on 23rd. I hope you get some answers xx

[Stereolover]

You’re under the best care with Prof D‘Cruz.

I hope you get a definite diagnosis because often it’s the not knowing that is worse. For what it’s worth I have APS and MS. My lumbar puncture didn’t hurt at all, I’ve had routine blood tests that have hurt more. Good luck