This would be my first post on this site so please do go easy on me xxx
I was wondering if any of you had been diagnosed privately or on NHS. I'm 50 years old female with suspicious symptoms of potential ASP. In 2009, I had some stroke-like event which gave me disability as I used to be quite fit and alert. My marriage went down and so my employment, friends etc. But I won't go into too much details to bore you with ...x
Unfortunately, my current financial situation means that I may be forced to be seen on NHS and may not be able to go for a private screening. I gather that Prof H is/had been retired from NHS (?). Did you have any specific doctor in mind when your GP was referring you to St Thomas's hospital for ASP screening? (This question may be too sensitive to be answered; so PM me, please if you can? Thank you! xx)
I also had sjogren's symptoms over many years and my eyes are only getting worse.
Am I correct to assume that you get to see a clinician who had been trained by Prof H (?) on NHS and these clinicians are also as good as Prof H? Is it better to see Prof Hugh privately after waiting for longer to save up?
I'm just trying to figure these out first by asking these questions if that's OK? Thanks very much in advance.
Hi Omega and welcome. I was referred through the NHS and saw Prof Khamashta at St Thomas' Hospital. He is Prof. Hughes main colleague, I believe, and he was absolutely brilliant. I took advice from others on this site and wrote all my symptoms down for him, and he said that was very helpful.
Really good luck with your journey, and remember that there is always someone on here who has been through this before, no matter how odd it seems, and I nominate this site for 'Friendliest website ever'...our blood may be sticky on here but the hugs flow freely!
I am new on this site. Please can you tell me how you got a referral to see Prof Khamashta? My daughter has had symptoms for 12 years and has not got any help anywhere. Her GP recently did a blood test which came back negative and has refused to refer her.
Hi SandraLily and welcome. My GP also refused...muttering something about the budget wouldn't justify it as I had already been diagnosed, but everyone was treating each individual symptom and it made sense to me to try to see someone with an overview of APS, and (let's be honest) some knowledge of APS!
I spoke to my haematologist and told them that I was getting no real support from my GP, and that, while the Haemo was very good at looking after my blood and monitoring my Heparin dosage, no-one was helping me with my joints, dry eyes and mouth, fatigue and the general effects of having APS.
My Haemo happily referred me to St Thomas' and I thank them for listening to my request.
I wish you and your daughter good luck, and good-ish health - keep smiling and holding hands!
Thank you Larraine. I am greatly encouraged to hear from you. I just need to get started on finding a way to get my daughter the best kind of help. Sandra x
Hi there, as above, the named professional is your best bet, write everything down in chronological order - your doctor will benefit from you being referred there, as well as yourself:
Hi Omega, I personally asked to see Prof Hughes at St Thomas but that was back in 2004. Even though I was referred to him I sometimes got a junior and fought to see him. I understand there are some great colleagues of Prof Hughes still in the NHs who also work with him privately.
His private waiting list is about 5/6 months.
My advice would be to try for an appointment on the NHS and privately to at least get on the waiting list. An appointment can always be cancelled with notice but at least you would be on the way to seeing somebody.
Were you tested for APS in 2009? If you already test positive for Sjogrens the 2 diseases often come together as a package. Do you have any treatment for the Sjogrens?
No, I'm afraid that I do not have a confirmed diagnosis of sjogren's. Over the years, doctors kept suggesting or mentioning sjogren's to me when acute / chronic symptoms kept cropping up.
In my experience, GPs weren't particularly too "bothered" by potential sjogren's. It had been "side tracked" from time and time again. If St Thomas's hospital has a doctor who can look into this, then I'd be more reassured.
To be honest, I would be shocked if my GP knows anything about APS let alone Sjogren's.
Hi welcome to the site. My experience is that you'll only ever get support from here, especially Mary's.
I was at st Thomas's last week to see prof hunts team, and saw one of her research fellows. They were brilliant, and I thought very thorough, so as long as you find out which consultant deals with the conditions you have then you won't go wrong. I found this out by calling them and explaining what I had, and also asking on this site too.
Goody...but in turn, I feel supported by members on here, and also the other ADMINS I work with on here, who probably prevent me turning into a miserable old frump! Mary F x
Mary its no good I have to say this, I find it so hard to look at your profile picture and not think something stupid. My brain keeps telling me that face is writing the posts. x
I would just like to say Professor Hunts team is brill and I see Karen Breen at Guys on a Monday or Wednesday she is at St Thomas's too on a Tuesday I think.
If there are more problems other than the aps they will refer you to rheumotology.
Hi Diane xxx Thank you so much for your most helpful post.
I'm really grateful of your kind help and support over this site!!
PS I'm currently thinking if I should just have ASP labs first under my usual private doctor (whom I recently stopped seeing due to costs) locally and see if they come back negative or positive before seeing my GP to ask her to refer me to one of these ASP doctors.
Get yourself the referral anyhow.. you can always come back to that expensive route if that is what you need to do. I attend both, but take my NHS tests or anything I have done, along to private appointments... as I simply can't afford it, beyond the first set I had done. All the best with you progress, keep us informed, as it is always useful to hear how people get on. Mary F x
Without your consistent support, I would have been living wondering or in denial forever. I really appreciated your great support and this great site!!
Very Best wishes, xxxxx
Professor Beverley Hunt and Dr Karen Breen (and team) are the best NHS specialists at Guy's and St Thomas' at the moment - they are based on both sites. Prof Khamashta now works in Women's Health so still does his pregnancy clinic (along with Beverley Hunt) at the Lupus Unit, but all primary APS patients will start to switch over to Beverley Hunt's team so I suggest you start with them to avoid having to switch over.
You shouldn't have to pay privately unless you get nowhere on the NHS so it's best to try this way first.
• in reply to
Thank you so much for your valuable advice.
To a new comer such as myself, ASP diagnostic pathway seemed so confusing until I "discovered" so many lovely people over this site. I'm so grateful of your excellent guidance, too.
Thank you so much. I will get started on tackling the issue, and I feel encouraged now. It is so good to be in touch with people who understand what my daughter is going through. I will let you know how I go on. Sandra x
Hi there, after losing my sight for ten minutes in 2008, I was diagnosed with APS and told to take Aspirin, so not knowing about APS I decided to investigate myself on the computer and learn more about the condition as my doctors had not heard of APS. !!! I just came across Prof Hughes by accident and because I was so desperate for advice and help, I wrote to him personally and received a lovely letter back from him. Prof Hughes invited me to London where I had a private consultation which I could not really afford as I had lost my job due to my illness. I managed to see him a few times and he told me he was retiring from the NHS. I phoned the hospital and asked if they could recommend another consultant there, and was introduced to Dr Khamashta , (who is now a prof). I paid privately to see him a few times and found that I could not afford the consultations, so was told that if I requested from my Gp a referral letter to St Thomas , I may be lucky and get through the NHS. This I did, and am very pleased to say that I have been seeing Prof Khamashta ever since , twice a year, and whenever I feel that I need to see him. He has been tremendous. It was the best thing I ever did and thank god I did, because as I said previously, my GP is not too familiar with APS and apparently I am the only patient at my local surgery who has this condition-frightening!!!!!! So, I suggest you go to your GP, ask for them to refer you. Each area has a NHS budget so you may not be so lucky as I was. Prof Khamashta is wonderful and I cannot thank him enough. Good luck !
• in reply to
Thank you so much, Julie-Anne, for sharing your bravery and commitment to go through your own ASP/Hughes' S journey... You must be a very brave lady...I must learn to be stronger.....I feel so supported by your lovely post and this site!!
Thanks again xxxxxxx
• in reply to
Hi Omega, You are welcome could you tell me if you have just received a reply from me ? I think I have sent it somewhere else !! Sorry, I am having a really bad memory day !!!!! I cannot think straight and my head is like cotton wool !!!!
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xxx 
Thanks so much for being so constructive. xxx 
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