Catch up

[crista1]

Just a catch up.

I got to see my G.P recently who agreed to send a referral to Prof Bruce who specializes in APS/Hughes in Manchester. In the meantime I went to see a consultant in relation to a different matter and had a scan on my womb, where a blood clot was seen and taken out. I was told after two positive blood tests I had 'Cardiolipin M Antibodies' (a year and a half ago ) I feel I have had TIA's in the past, but until I am seen by Prof Bruce and am hopefully scanned, I won't know for certain. I have again this week bruised for no reason and did so three/four weeks ago.

I am afraid that I will be sent away and told there is nothing wrong after I have seen Prof Bruce. Would the fact there was a clot in my womb be taken into consideration along with the bruising, loosing my sight on three occasions, brain fog etc?

I am on no medication at all.

Thank you for any answers

Bernie x

[Manofmendip]

Hello Bernie

It certainly seems that you need an urgent referral to an APS specialist.

Has anyone suggested that you take 75mg Aspirin daily, as a precaution until you are seen?

Keep us informed on your progress and good luck.

Best wishes.

Dave xx

[crista1 in reply to Manofmendip]

No, no-ones said anything!!

Maybe i should take the asprin?

I'm wondering if I should pay, so I get seen sooner?

My G.P didn't know anything about APS : ( although he did know it had something to do with blood clotting)

Thank you Manofmendip : )

xx

[MaryF Administrator in reply to crista1]

Please give the GP this website, send it to his secretary by email: hughes-syndrome.org/

Let us know how it goes. Many of us have been in a similar position. MaryF x

[crista1 in reply to MaryF]

Thank you Mary, I will send it on Monday once I have found out my G.P's secretary's email address. I will keep you informed xxx

[Manofmendip in reply to crista1]

You are very welcome and we, on here, can't give you medical advice, as we are not qualified, but all I would say is many people with and without APS take low dose Aspirin for all kinds of reasons. As long as you are not allergic to it and you take it on a full stomach.

If you can afford to pay to see an APS experienced consultant, sooner than getting an NHS referral then that would be good. Have a look on the site that Mary sent you the link to and you will find a list of specialists in your area.

Good luck and very best wishes.

Dave xx

[crista1 in reply to Manofmendip]

Thank you very much Dave. I will contact the relevant consultant first thing next week. All the very best to you.

Bernie xx

[donnabrain in reply to Manofmendip]

is everyone supposed to take aspirin on a full stomach?

I take mine first thing as it is in the am bubble of my nomad tray

sorry to have hijacked your thread crista1, hope you get to see Prof Bruce soon x

[Manofmendip in reply to donnabrain]

Some people can get ulcer and bleeding in the stomach from Aspirin, the chance of the happening is reduced if you have a full stomach, so I have read.

Dave x

[crista1 in reply to donnabrain]

Thank you Donna. Hopefully get to see soon. And not at all. We get to learn so much from what others post xx

[Manofmendip]

That's good Bernie.

We will help you as much as we can. We are all in similar situations on here.

Dave xx

[diggers]

Hi Bernie

I am from the North West and have have been an APS sufferer for nearly 10 years. I have certainly done my rounds of consultants in the region including Prof Ian Bruce. To be absolutely honest, I think you need to see a haematologist at this stage and would definitely recommend Mike Nash who is on at the MRI. I have been under several haematologists in the past and he is by far the most proficient and interested in this field. It was Mike who referred me to Ian Bruce as I was experiencing joint pains at the time.

I think you need to get re-tested for anticardiolipin antibodies and I am sure they will also scan you for beta2 glycoprotein1 and also lupus anticoagulant. You need to have the latter done before you start any anti coagulation such as warfarin.

Don't think you should hang around Bernie: Mike Nash is purely NHS but I think he would be able to see you pretty quickly.

Hope all goes well. If you need any other local advice/help, please let me know.

It can all be massively frustrating but you need to take control of your own health issues as no one else will. Push hard for this consultation with Mike Nash.

Every good wish

Paul x

[crista1 in reply to diggers]

Thank you Paul. I went to see my GP last week and gave the details for Prof Bruce. The referral may have been already done. I'm wondering if my GP will also refer me to Mike Nash or cancel for Prof Bruce and refer me to Mr Nash?

Not sure if my GP realizes how serious this may be. I did ask for a referral in May to the hospital for a unrelated matter and went just under two weeks ago. That's when they found the blood clot. I'm back for further results in 6 weeks or sooner depending on the outcome.

I will ask for another appointment with my GP this week.

I am grateful for your advice and will take you up on your offer on your knowledge of the local area : )

I'm from the M/C area.

Hope you are well.

Bernie x

[diggers in reply to crista1]

Anytime Bernie. I am in Knutsford.

I would insist that an appointment is made with Mike Nash. It is your life and you need to request the meeting rather than wait for someone else to suggest it. Sorry to sound so hard but you need to control the situation and not leave it to others. It is your very precious life.

Paul Xx

[crista1 in reply to diggers]

Thank you Paul. I will contact my GP tomorrow. It takes someone to say it as it is sometimes : ) Not hard at all.

Bernie xx

[Hidden in reply to diggers]

Thanks very much for sharing this info Paul - our charity will write to Mike Nash to make sure he's happy to be included in our online directory and this will, no doubt, help many other patients in the North West

hughes-syndrome.org/self-he...

[JanBad in reply to diggers]

Hi Paul

Mike Nash saved my life 6 years ago, after an high speed transfer from my local hospital to the MRI for with a very serious abdominal bleed that turned into a 8 lb haematoma. The man is my hero, I would recommend him to anyone looking for a haematologist who understands APS in the North West.

Jan xxx

[crista1 in reply to JanBad]

Thank you Jan xx

[Lure2]

-Hi Bernie,

I feel so happy for you because you have had so excellent advise what to do from Dave, Mary and also Paul.

I feel concerned all the way from Stockholm. I wish you good luck. It is sometimes a fight.

Kerstin

[crista1 in reply to Lure2]

Thank you Kerstin.

I cannot thank everyone enough (Yourself, Dave, Mary and Paul) The advice has been invaluable and I am so pleased I have found the site.

I am hopefully closer to getting to the bottom of my health issues.

Thank you again.

Bernie xxx

[Lure2]

Hi Bernie,

Yes I felt so glad because I realized that you were on the right track. Here in Sweden we do not have any site. They are glad to help you I know that.

I would also suggest you buy some books from Hughes Syndrome Foundation. They have helped me very much indeed.to understand my illness.

Take good care. My very best wishes from Kerstin

[crista1]

Not happy. After seeing my GP last week and giving him the details of the doctor and relevant hospital, I have now received a ring and book letter with a choice from 3 completely different hospitals and not the one I wanted. So will now contact my GP tomorrow to find out what's going on!!!!!

[MaryF Administrator in reply to crista1]

You may have to go in and calmly and firmly push your case, as it would be less cost effective for him/her to send you to the wrong place, rather than seeing somebody with a working knowledge who will decide on the correct medical treatment. Mary F x

[crista1]

Thank you Mary x

I contacted Prof Bruce's secretary today and left a message, she then contacted me and left a message saying that my GP would have to send a letter in relation to the referral and an appointment couldn't be booked via the check and book system?

Not sure what my doctor was thinking about in relation to the referral. I gave the name and address of Prof Bruce!

I also contacted a private hospital in relation to paying for scans, but it was like banging my head against a brick wall.

It has been suggested I see a hematologist first ( I had a blood test this week re-checking for the APS antibodies ) but I am unsure what tests a hematologist would conduct which may be different from one's done by a Rheumatologist?

Prof Bruce is a Rheumatoligist.

I am arranging another appointment with my GP to sort this out. But may be asking for an appointment with Mike Nash who is a Hematologist.

I have every faith I will get the correct referral, I just hope I'm not a puddle on the floor by the time it is done!!!!!

[MaryF Administrator in reply to crista1]

You are doing great with this, and just be sure to make sure they both talk to each other, and always extract any paperwork you can after tests or appointments, between myself and my children we use four hospitals.. I chase the lot for us all, and track down useful email addresses....Mary F x