Need prognosis

Hi there, I'm 52 and diagnosed with APS and recently and commenced on Warfarin ( 2.5-3.5 range expected), this is as a result of a stroke in May 2015. I am still experiencing giddiness, fatigue, migrane type headaches, numb fingers, feeling dim and clumsy and forgetful, I also have chest problems which I feel are related. My symptoms fluctuate and I have good days and bad.

The 2 years prior to my stroke I was getting chest problems every 2-3 months which resulted in severe breathlessness, A & E attendances, steroids and antibiotics and time off work. My symptoms never fully resolved and doctors attributed this all to chest infections/exacerbation of asthma.

My INR has been 1 and 2.5 on my 2 recent tests. I have not yet seen any specialist regarding diagnosis, in fact I found out about APS having been CC'd into correspondence from the haematologist to the stroke specialist, so I've not actually spoken to anybody yet.

My problem is ( if I don't have enough all ready ) my employer is really hassling me about returning to work, prognosis etc. I have been to 2 formal sickness meetings, in the last meeting I was told by them to 'tell my GP to expedite the appointments' as my 'job was at risk'.

They feel I am unlikely to have another stroke now I'm on treatment and cannot see why I can't come back. I am currently on half pay and work for the NHS as a senior nurse in A & E assessing mental health patients who attend in crisis.

I get the impression that my employers feel that I am overdoing the sickness role, my stroke doctor stated that all my symptoms were psychological and asked my GP to refer me for counselling, I can assure I am not anxious these are real symptoms. My GP admits he knows nothing about APS and he is reluctant to refer me on to anyone.

As I say I have not seen any specialist as yet, I am due to see a chest doctor next month and the haematologist even though I have already been started on warfarin and managed by the warfarin clinic run by a nurse. Occupational Health doctors have referred me for neuropsychiatric testing

I'm a bit stuck and not sure how to proceed......any suggestions in regards to answering my employers, they want answers now.

Thanking you all in advance

9 Replies

  • Well your symptoms are very similar to mine but I don't think mine are Aps related. I've had two strokes both prior to diagnosis and was started on Clopidogrel for a year, followed by Warfarin from a year after the strokes, it took that long to get a diagnosis. Apart from fatigue, joint and muscle pain I had no other symptoms until recently when I developed vertigo and have struggled with dizziness and permanent headache, worse joint pain, fell over in the shower etc. Mine has now been put down to Polycythemia, I produce too much haemoglobin.So have now been referred to a Heamotologist/ Oncologist to get to the bottom of that. Lots of people on here have issues with every symptom you've mentioned so it's unlikely to be psychological, possibly neurological. Can you get your Gp to write to your employer? Mine has been really helpful. I don't understand why your Gp would be reluctant to refer you when he admits he knows nothing about the condition. Push for referral to one of the Aps specialists listed on the Hughes website.

  • Has your employer referred you to occupational health? I deal with hr and sickness monitoring as part of my job, the employer needs to get professional advice on your prognosis before trying to force you back to work. This condition would be considered a disability and it would be down to the employer to make reasonable adjustments to help you get back to work. Are you in a union? How old are are you? Are you in the pension scheme?

    I think you need to push hard for a proper referral to a specialist.

    Don't depair. The symptoms are very real. With proper treatment, you can feel a lot better.

  • Sorry, I can see you are 52. If you are in the pensions scheme, and your employer is suggesting that you must return to work or be sacked, then the question must arise about whether you can access your pension early. Speak to your Union.

  • Thanks, I should have reiterated that I am currently awaiting an appointment for Haematology therefore my GP is reluctant to refer to anybody else ie; Rheumatology. I have printed information from the Hughes website to give him though.

    The OH Consultant has been great, supportive and sensitive and it was her that has arranged the neuropsychiatric assessment.

    Unfortunately I was with the RCN but found them biased and stupidly left. I have called the RCN & Unison who have both said they can give me telephone advice if I join, but they will not be able to represent me. So this is something I need to look into more.

    Also, as a MH nurse I have something called special officers status which means I can retire at 55 so I plan to call the pensions people about that.

    Problem is, I have a short window of motivation and concentration and by the time I get into gear I either fall asleep, get distracted or something else happens.

    If procrastination was an illness .......I would have it.

    I might add that the dizziness has worsened since being on warfarin and on telling the warfarin nurse this she replied by saying I need to mention it to the consultant........but I've not been sent an appointment yet.

    I suppose had I been seen by Haematology and then started on treatment I would not be asking for help here, I just feel very alone with this.

    Once again thanks for your replies......

  • Sorry that you have such a bad time ....... Who put you on Warfarin? Did you test positive to several antibodies? I know read that you have not seen a Specialist at all!!

    Do that as fast as you can! Also see to it that you INR is quite too higher than 1.0 (you are not anticoagulated).

    Do you live in England? You have to speed up with this matter I think. I am from Sweden but your situation is a bit unusual I think (been on this site for several years).

    I wish that "chest-dr" was a Specialist. Do you have high bloodpressure? That Chest-pain could be microembolies. I have done a lot of Echocardiographies.

    Good luck from Kerstin in Stockholm

  • If your INR is listed in your range of 2.5 to 3.5, then your medicine has not reached the therapeutic level and your symptoms will not resolve until you do. Of course, many of us do better on injectables instead of warfarin. This is why it's so important to see a specialist who is experienced in treating Hughes Syndrome; they will be more likely to craft the specific therapy that best fits you. But until you get in to see that ecperienced, qualified doctor, do watch your Vitamin K intake -- the more green leafy veggies you eat the lower your INR will be. And though green leafies are healthy, at this point you want that INR to be in your range so that, hopefully, your symptoms will resolve.

  • Agree with colleagues that your symptoms may not improve until you reach your target INR, which for many of us is 3.0 minimum.

    Doesn't matter whether you see a Haemo or Rheumy so long as they know about Hughes/APS. Look at the list of recommended docs on this site- usually on right hand side.

    Good luck with it.

  • Thanks for all the comments, sorry for the delay in responding, been feeling lousy this week.

    I've spoken to my GP who seems to have familiarised himself with APS, in fact he says I have PAPS, he also said that I will see a Heamatologist as a one off and will not need a referral to anyone else as I have now been diagnosed.

    I had a Neuropsyche assessment and the psychologist believes I have a brain insult (lol) which accounts for some of my clumsiness and problems with concentration and organisational skills.....but she feels my memory is OK.

    INR really playing up, I'm on weekly bloods now but my INR is still hanging around the 2.3 they are fiddling around with my warfarin. I do watch my diet and have not overdone the green veg, in fact my diet is fairly regular.

    I'm now looking forward to my respiratory appointment to see if my chest problems are connected to the PAPS.

    As for work......I don't really care anymore, If they want to think I'm malingering let them do so.

  • Hi Tmal,

    You just have to get an Expert!!!! otherwise you will have difficulties. So many organs can be attacked by these antibodies. I had very high bloodpressure and now I have Pulmonary Hypertension.

    So many of us have gone the way you go now through Neurologists and Psychologists who do not know that APS has to do with too thick blood. When it is properly anticoagulated you can start feeling normal and be able to work again. My therapeutic level is between 3.2 - 3.8 and I feel best at the higher level. I also selftest.

    An Expert of APS knows exactly what to look for when you talk of chest pain for ex.

    It is a real fight for us to get to the right doctor and get the right treatment but we have to do it. Ordinary Doctors are afraid of us as they do not understand all the curious symptoms we have. A Doctor wants to understand and not feel incomptetent. An Expert is interested if we meet the right one. I want to help you but can only wish you Good Luck!


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