My neurologist at the Norfolk and Norwich hospital has addressed my anticoagulation in regards to my APS (10mg warfarin daily) but when I requested could some of the symptoms I'm suffering from moods, tiredness and brain fuzziness be looked at his response was to try and send me to the NHS well being service which is basically a physicist.. I've had one confirmed stroke a suspected tia and I'm only a 44 yr old male
Can anyone suggest somthing before this condition does actually start affecting my mental state by the ignorance of some health professionals locally
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Keithbutt
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Would love to have a health professional who actually relates to this condition but as I understand there is no one locally and its virtually impossible to get referred to a APS specialist especially when your current professional wants to send you to a shrink
I have APS and am also treated at the N&N. Are you not seen by rheumatology as well as neurology? Rheumatology takes the lead in APS and generally refer to whoever they think will help with various symptoms. If not I would suggest you get a referral and get a good sympathetic GP. I am the same age and have quite severe symptoms mainly neurological but now I'm mainly seen by rheumatology. I did not get on with warfarin and the symptoms you mention only improved after switching to heparin, aspirin and hydroxychloroquine. It did take however quite sometime to get the right combination of both consultant and treatment. Although everyone is different. I did also change my neurologist at the N&N as help was a bit lacking in the early days. I also pay to see a nutritionalist privately in Norwich who advises on supplements and diet. This also made a big difference. Pilates in Norwich also helps with the muscle and joint pain management and strengthening. I was also referred to the wellbeing service but more for developing personal coping strategies and energy management. Happy to discuss if you think this will help.
I only see neurology and after another follow up this week it was discussed about referring me to rheumatology but only after pointing out that according to the Hughes foundation website there is a APS specialist in that dept..it's just so frustrating..when I had my stroke although I was lucky in respect to its effects there was no real advice given or offered whether locally at my gp or the n&n except "give up smoking now else your gonna die" (these were the actual words used by gp)
Well I'm smoke free for 15 month's I just want some face to face advice and some help...don't get me wrong forums like this are a wonderful thing with a lot to be learnt from life experiences but just wish there was more education at hospital level to help everyone with all aspects of APS..
Really helpful reply and interesting about the pilates too - it seems to help patients a lot as does Tai Chi if they are having balance problems.
Could you please drop me an email at the charity if you get time as I just want to check that we've got your Rheumatologist at the N&N on our APS specialist list - we've only got one doctor so far and it would be good to have another if there is one:
We have learnt here that the Neurologists do not "get" what APS is about - very sticky and thick blood.
It is not so important how MUCH you take of warfarin, but that your INR (the actual value of how thick you blood is) is HIGH ENOUGH to avoid clots, stroke, DVTs and microembolies etc etc.
Also one other thing is important and that is to have an APS-Specialist. He/she knows what to look for regarding all the different symptoms of this illness. So very very few doctors really understand how to and when to treat APS. It is treatable and when the blood is thinned enough you can live a normal life.
Please read "Sticky Blood Explained" by Kay Thackray. She has APS herself and writes about the different symptoms of APS. Really a very good book also for relatives to understand this rare illness.
I have had TIAs and ev a small stroke and I am on warfarin and selftest since 4 years. My therapeutic level of INR is 3.2 -.3.8 (set by my Hematologist). Most of us with this symptoms from TIAs feel best on an INR over 3.5.
Try to find a Rheumatologist who is specialized also in other autoimmun illnesses. Sjögrens syndrome and Lypus (SLE) and Thyroid-issues are often connected to APS.
Good luck to find the right doctor who can make you feel good!
I'm trying to get to the right people but think I'm gonna have a battle
My inr is set at around 2.5 and was doing well until my last hospital visit where my level dropped to 1 so the warfarin was increased and now at 10mg and touch wood its been stable for a month.
Hopefully its stabilised but struggling as since all this started I've continued working despite it getting harder to stay positive and moving forward
Be aware that many docs who do not understand Hughes are loathe to set a target inr as high as those who do understand it would do. The purpose is have it set at the level that is safe to prevent further clotting episodes. Doing well means having the right target and sticking to it. Many of us, not all, who have had clotting events have INRs in the higher 3s. I have had multiple TIAs when my INR was 3.3. My target, set by Prof H, is not 3.8 - 4.0
Try and find a specialist who is on this site's list. Another alternative is to see prof Hughes privately if you can. Few argue with his recommendations.
Most of us with a stroke and TIAs need the higher level of INR if we are on warfarin.
I suggest you take a new battle. You obviosly live in England and that is easier to find an APS-Specialist in that country than in the US.
Have you got a diagnose of APS? You have the symptoms of APS with a stroke and a TIA.
I have been on this site several years and almost everyone have had a battle and had to fight to get a diagnose and a doctor who understands that the blood must be propperly anticoagulated. That is the key!
You can have another stroke or TIAs. I had microembolies and they are not always seen on an MRI but they do a lot of damage to our body if they are not stopped in time. Hope your read the book.
Yes I agree it is very frustrating. When I was first ill I assumed I would with urgency be pushed through the system and provided a clear plan of diagnosis and treatment. However due to APS not being well known it is unfortunately a bit of a battle. I do think though that over the last 5 years through the great work from the HSF things are moving forward and awareness is increasing. To help myself I made sure I read everything I could. Kept diaries of symptoms. Compilied my own medical file to every appointment. Asked for copies of every letter and test result. Asked for referrals whilst providing back up information. I also paid for some private appointments too but to be honest this was really only a help in the diagnosis stage rather than treatment. Like you I started on warfarin but found the symptoms you described only went away with an INR of 3 to 3.5. I did have to push to get this level and keep on at them to increase it as the symptoms didn't improve. I took loads of info from the HSF to back this up. I also bought an INR self monitoring kit. I was talking to and visiting my GP regularly. My early fears of being a nuisance went out of the window! I got there in the end being out on heparin although I am far from perfect but it did take a lot of effort. A lot of things that can help are not always medical led ie healthy living, supplements and exercise as my experience is that the medics are not too helpful in this area. It is also quite personal and is worth exploring every avenue you can without relying on doctors. Just keep them in the loop. My consultant is on the HSF list who I would recommend. Good luck.
Hello, please see our list of specialists here: hughes-syndrome.org/self-he... You need to be seen by somebody who actually understands the condition in it's entirety and also understands that they need to keep an eye on you for signs of Thyroid disease plus Sjogrens DIsease, also monitor your B12, D and Iron (Ferritin), alongside the correct medication for your Hughes Syndrome/APS. If you are not being listened too, you can involve PALS and also perhaps take your firmest and most articulate friend, neighbour, colleague or relative along to be your advocate and back you up. This is simply not good enough, MaryF
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