Blood clot in brain not caught in time ..aps patient .. now awkward to walk

[fitzyc]

Hi all seeing my thuemy first time on Wed ..had blood clot in brain not caugh in time even though stood in front of proff of neurology ..told him pins n neddles / nunbness in hands / double vision for years had severe tiredness / balance went , then everyone all docs decided cat scan yipee they began to believe me ..put on aspirin aswell as warfrain ..now waited 5 months let still wobbly ...just hate have live with it ..anybody else same thing ??? 😨😞 and before anybody says anthing guys iam walking not far though ...

[MaryF Administrator]

Oh dear, I hope you let the professor of neurology know what happened to you, why they do not get it is beyond me, people are however starting to fill in feedback via NHS choices as the Care Quality Commission does from time to time trawl through them. There was a debate recently in the House of Lords: publications.parliament.uk/...

ps how you make good and sustained progress, well done with the walking.

MaryF

[fitzyc in reply to MaryF]

Believe me did ..nicely in front of student doctors ..best time to get them off guard ..when was in hosp haemo didn't want to c me knew she missed diagnosed ...seeing best docs in hosp a doctor told me but as I said that's what iam afraid of ...might aswell be talking to birds on trees ...knew something was happening

[MaryF Administrator in reply to fitzyc]

Have you seen this list of recommended specialists: hughes-syndrome.org/self-he...

MaryF

[fitzyc in reply to MaryF]

Hi as I live in ireland ive told my GPS that know where to go as I've contacted st thomas the clinic said proff beverley hunt ..it dr karen breen as I emailed them rough idea what going on ..so lupus see if have it over next few weeks as this is secound time they reviewd me ..I like my haemo but can't let it go that nobody picked it up ...as I told doc at Xmas I learn more from websites than off docs ..leaving it till summer see proff again ( terrible know is waste of visit ) ..tks mary gteat website

[MaryF Administrator in reply to fitzyc]

Thank you, pop on here if you need any medical papers to give them or information, and we will try and help. MaryF

[anniesensi in reply to fitzyc]

Both Dr Breen and Prof. Hunt are fantastic haematologists, their support staff are incredible too. I know I'm safe in their hands.

Do let us know how you get on with your appointment?

Best wishes to you.

[anniesensi in reply to fitzyc]

Dr Breen is excellent. She is my haematology consultant. 

[fitzyc in reply to anniesensi]

Tks ..for reply ..i genuinely feel doc's are getting fed up with me ....it's crazy doing everything  told to do .  ..I give them all feedback ...but nothing in return ...terrible had to wait till balance problems to prove something  wrong ...

[Vespa1 in reply to MaryF]

Hi, unfortunatley we booked to see one of the recommended specialists on your sight and when arrived at clinic got to see one of the team not specialist. I had to tell them the meds she was recommending were not to be taken with warfrin and now just had letter after full bloods done and they had recommended coming off anti coagulation as not APS and going onto anti platelet e.g. Aspirin. Went to see our own GP who very fortunately checked the results and found recomendations and un diagnosis to be incorrect. Husband does have APS and needs anti coagulation not anti platelets. Needless to say I shall be writing a letter of complaint but just to warn everyone don't always believe so called specialist and ask to see this sights actual list not one of their team. I could now be widowed or full time Carer as he has had 3 strokes already had I have not found this sight. Go with your beliefs everyone and get things checked if not sure. 

[MaryF Administrator in reply to Vespa1]

Hi, can you private message me the name of the person you were made to see instead of the specialist you had hoped to see.   MaryF

[Vespa1 in reply to MaryF]

Could you tell me how I private message you please. 

[MaryF Administrator in reply to Vespa1]

click on the picture of me/name and it will give you the option to send a message,   MaryF

[Yllek]

Hello and welcome

I had all your symptoms and 4 different neurologists told me it was in my head!

Finally got APS diagnosis and only just started to feel well this past week with warfarin and INR 3-4.

Hope your rheumatologist know this condition and can help you feel well again.

Kelly X

[fitzyc in reply to Yllek]

Hi I also feel lot better when warfrain is over 3 ..I told my haemo in hospital want it over 3 ..so was 3.66 last day so  8-7 ..diff days ..least begin to get attention .

[fitzyc]

Frightening thing is they KNEW I had aps ..obviously like I told my very firey gp that i am (very lucky to have )can't trust them in hospital ....

[Lure2]

Welcome to this site where we learn from eachothers different stories. We are in the same boat.

I wish you luck on Wednesday when you see your Rheumatologist for the first time! Hope it is a nice person who also knows APS and dare to put you on a rather high number of INR. I also was on Aspirin with my neurological issues and later on Warfarin and when I was over an INR of 3.0 or around 3.5 I was fine. I selftest which makes it easier to be stable. Please let us hear how it goes for you and stay on this site also.

Best wishes from Kerstin in Stockholm

I

[anniesensi in reply to Lure2]

I self test too, it's a godsend, and with such an erratic INR I believe it's been a lifesaver.

Coincidentally, since being anticoagulated my migraines have stopped, so when I had one a while ago I tested and my INR had suddenly dropped to 1.4! I keep clexane at home (on the agreement of St Thomas') and use it when I go under 3.0. Anyway, the migraine cleared, and if I didn't have a self testing machine I probably wouldn't have gone for a blood test with a migraine.They're so worth the cost, and in England I get all the strips and lancets on prescription.

[Lure2 in reply to anniesensi]

Yes, I wish all of us with APS could be well protected from clots.

So glad that you also can selftest!

"Happy Easter"to you! (we say in Sweden)

Kerstin

[fitzyc in reply to Lure2]

Hi everyone home ...he looked even more mixed up than me ..said need physio will try hurry it up ..asked him if the balance now is down to aps ..said no ...I asked aswell if this is way doctors pick up ms instead of aps ???..told me too completely  different things and get off internet ...wasted trip 

[disloyalorder]

Hi, welcome to the site. I can empathise with your story a lot - I was in hospital with a bleeding incident and told doctors/nurses repeatedly that I had APS (you'd think the combination would be a red flag), I told them repeatedly that I couldn't miss my anticoagulation doseages, and was ignored. I ended up with a blood clot in my brain that caused total loss of vision, something that I've only partially recovered from. I appreciate it's very difficult for even experts to spot all the different ways that APS can present itself, but I do wish that the default option wasn't so often that the patient is exaggerating!

I really hope that your mobility improves and that in future you're taken more seriously. It sounds incredibly macabre to say but in a small way I am grateful for my loss of vision, because now whenever I am concerned about my treatment or symptoms I have the threat of specific, severe consequences if I'm not treated with the appropriate level of care. Not that I wish those symptoms or consequences on anyone!

[fitzyc in reply to disloyalorder]

Oh lord isn't that disgraceful  that you as aps patient had to go that far for someone to listen ...

[Christine7]

Hi Fitzyc, sounds very familiar to me, saw my GP for years for one problem or another. I constantly told him I had problems with my head/balance etc. Told me to get my ears syringes twice which I did. He then put me on antidepressants and told me I was depressed and it was all in my head. Finally diagnosed with APS after venous sinus thrombosis. Shouldn't take a seizure in ASDA to finally get someone to listen. 😫😫😫

[Hidden]

I was also lucky to receive a fast diagnosis. I had a massive saddle PE and received testing bout 4 months later. They were already going to put me on blood thinners for life just because the clot was so extensive. I had one more test performed about 2 years after the first test that shows I still have APS antibodies in very high levels. There is no denying my two positive blood tests and major clinical event. I don't have to fight too much with my docs after they see my hospital records. The only problem I have is that my GP doesn't take keeping my INR above 3.0 seriously, so I take extra Warfarin to keep it up there myself. I take an extra 2.5 milligrams one day a week and it keeps my INR above a 3.0. I'm going to see a specialist named Jill Schofield in Colorado via long distance, or maybe I will drive down there to see her once a year. She apparently has trained under Professor Hughes and she knows that APS does indeed cause extreme bouts of fatigue. She actually gets it. I will have her write a detailed letter to my GP.

J

[fitzyc]

Hi everybody went to appointments rhuemy said just need physio left upper leg weaker than other ..that's it waiting for appointment as he said it will come back . .i said beginning to wonder and asked is this what they call aps balance problems? ??and docs pick it up as ms ..??..said no two completely  different and stop looking on net. .as haemo I like said doing everything they thing autoimmune  disease but like that lupus docs can only decide ..asked why blood clot not got in time ..doc had no idea I knew about blood clot ..and asked if it burst ..no answer got on different issues I was mixed up coming out ..

[anniesensi]

Similar experience, my first presentation of APS was a stroke in 2010, but because I have MS the A&E dr did not do an MRI to check for stroke. He didn't believe I could have had one at 34 yrs old, and I knew no better then either. I had a CT scan - only shows bleeds, not clots. The paramedics who took me in could see I was having a stroke, but not that dr on that day sadly. 

On a positive note, it is never too late for physio. I was in a wheelchair from the day of my stroke and for the next four years. Only after having more clots, PE's and an ischemic leg was APS  diagnosed and the stroke picked up. I'm now walking independently at home and can manage short distances outside on crutches. 

Push for neuro rehab and keep chasing for physio appointments! Hydrotherapy is amazing if you can access it.

Best of luck x