Finally got to see a Rheumatologist.

[Newcastlelad]

After 2 positive Lupus anticoagulant tests 12 weeks apart my GP agreed to refer me. This was about 8 months ago. I finally found out why I was waiting so long...……...the GP didn't actually refer me at all even though she reassured me twice she had. Anyway a different GP apologised and said she would give me a urgent referral. After waiting 4 weeks today I finally got to see a Rheumatologist. Sadly this was not the APS specialist which forum member Bevjane so kindly told me about. My GP originally told me she was referring me to her as I requested but like I said it never happened. I'm guessing the hospital and DR was different with it being an urgent referral.

So I explained to the Rheumatologist what had been happening with me. I told him I had the positive tests but I had not been diagnosed with a full blow DVT but I was confident I had many smaller clots around my body. If I sit too long I get a knots in my veins near the surface of my ankle and I have numerous lumps left in the veins in my leg from what I suspected were clots but my GP never referred me to get an ultrasound carried out. I also told him I was very scared I had Osteonecrosis of my knees and hips with being left so long with thick blood.

I was finally expecting some help and to be on the way to treatment...………. He told me as I have not had a clinically diagnosed blood clot I can't meet the clinical part of the diagnosis criteria so could not be diagnosed or started on blood thinners. He looked at an 8 month old X ray of my knees as said there was no signs of necrosis but since the X ray things have gotten 100 times worse and I have read X rays won't show necrosis in the earlier stages.

He told me I should see a physio and to keep exercising...……..by this point I can barely walk let alone exercise.

He took some bloods and said he will see me again.

I was wanting to ask has anyone been diagnosed with APS without a DVT and just from superficial clots.

Should I ask to be referred to the special I originally want too see but I'm worried they won't as I have not been officially diagnosed with APS.

Sorry for the long message and thank you for any help you can give.

[MaryF Administrator]

I think if I were you, I would be seeing the practice manager and explain just how long you were waiting to see the 'right specialist' and that despite being reassured twice, the referral did not happen, and then you got a referral to the wrong one, the other thing you can do is to gather up all existing blood tests you have had and consider a private appointment, I know it is annoying, but many of us have had to do this to get our NHS care back on track. MaryF

[Newcastlelad in reply to MaryF]

Hi Mary I'm definitely going to see the practise manager. I have always tried to be a good patient but it's gone too far. I'm going to look into going private one thing I was considering was getting a private ultrasound to try and get some evidence of the superficial clots but I'm not sure the doctor would class these as clinical criteria with them not being DVT's

thanks.

[MaryF Administrator in reply to Newcastlelad]

You would be best making sure that your GP runs your tests again for Hughes Syndrome/APS, Thyroid, Vit D, B12, Ferritin and Folate, and make it clear to them, that you will be forced to go private to one of the recommended specialists, and then use this as the basis of a very formal complaint also involving the Care Quality Commission, as it is simply very sloppy and dangerous what has happened with your care. You can give them the charity website, as well as the list of recommended specialists off this forum. Make it clear you would rather not complain but as you are not being heard and your condition is not being properly looked after you may be left with no choice if they do not help you.

1. tests: ghic.world/hughes-syndrome/...

2. general info about the condition: ghic.world/hughes-syndrome/

3 . a useful paper: the-rheumatologist.org/arti...

Mary F

[lupus-support1 Administrator]

This is appalling & absurd from 2 doctors! Lying to a patient is unethical!

My husband has had a DVT, but does not have APS. I have APS but have not had a DVT! Yes, I tested positive & had a wide range of clinical symptoms but no clots!

IMHO, doctors who cling to "Criteria" are not expert since like SLE, it requires a clinical evaluation!

I would recommend seeing Prof. David D'Cruz, trained by Dr Graham RV Hughes at the London Bridge Hospital, London.

I would also get the physiotherapy as this is also very important. Physiotherapists are acute observers of the body. It's especially important if you have problems moving. If it is unsuitable , they will say so.

With good wishes,

Ros

[1sam]

Hi dear, I second the idea of going to a private appointment.

I have APS and Lupus but not DVT, these are the blood tests that my rheumy used to diagnose me with APS:

INR

prothrombin time (PT) and partial thromboplastin time (PTT).

Anticardiolipin antibodies IgG, IgM, and IgA.

They were all off-range. My lupus anticoagulant numbers are within range.

INR and the 2 times measure how fast your blood clots, the aCL antibodies tell if the immune systm is targeting phospholipids.

I hope you get soon a diagnosis and proper treatment, but you need to fight for yourself and push Doctors to do their job.

You deserve to be healthy and feel well.

Hugs,

Samantha

[Jmiller623]

Hi Newcastle. Unfortunately, to meet the criteria for a diagnosis of APS, you need to have a documented blood clot, documented sequela of a blood clot (MRI shows old stroke, necrotic appearing bones on MRI) or multiple miscarriages. I am in the same position as you. Osteonecrosis is very very very painful. I am hoping you have not had to experience this!

Some doctors will prescribed anticoagulation for those who have long-standing livedo and/or TIA with lupus anticoagulant. However per guidelines, no anticoagulation should be prescribed without a documented clot. It would put the doc in a pickle if you had any sort of bleeding incident and this does happen in people with lupus.

A second opinion seems warranted but I wouldn’t beat yourself up if the second doc also says no. It’s frustrating but guidelines were made for a reason. Are you having any other symptoms beyond superficial clots?

[Newcastlelad in reply to Jmiller623]

I understand about them not wanting to give blood thinners until they are sure you have the condition. Would a documented superficial clot count towards the criteria?

The problem is I keep telling them I can feel the clots in my veins but they wont look into this deeper so I'm a bit stuck. I really need an MRI scan of my knees and hips as I'm sure I have Osteonecrosis from what I have researched. They just keep saying exercise more but it's impossible and sending me to a physio. Have you got Osteonecrosis? My knees are literally purple in colour which looks like the circulation is really bad. The capillary refill time in my knees is crazy long.

Yesterday I felt another big fracture in my knee and the area is very swollen now. The problem is I have gone to A&E with a fracture like this in the past and they ask have I had a fall or been hit by anything and I say no they immediately discount a fracture and refuse to XRAY me and I mention my Osteonecrosis worry they just say see your Doctor about this. Day by day I feel my knees and hips dying more and more it's so sad.

[Jmiller623 in reply to Newcastlelad]

Hi Newcastle. I’m so sorry to hear this. It sounds like you are in a lot of pain. A superficial clot is not considered a DVT and does not count towards criteria. As others suggested, it’s best to see a specialist for a second opinion. They will also be able to investigate if you have osteonecrosis or not as they will have likely seen it in the past.

I would try, as hard as it is to do, to not diagnose yourself before going to the doctor. Tell them your story and symptoms and see what they come up with on their own. In general, doctors do not respond well to the patient who comes in with their own diagnoses and tries to guide their own management. You have to lead them to the promise land without forcing them there.

I do hope you find a doctor that can help you! I wish there was something that could take your pain away. Sending many hugs your way! ❤️

[Wittycjt in reply to Jmiller623]

That is do true they have to be the “leader” and help us if they will just ever say “i dont know but we, you and I (meaning Dr) will figure it out. Reminder there is only one God... im being a smart a$$

[Jmiller623 in reply to Wittycjt]

If you find a doctor who says I don’t know. Let’s figure this out together. That right there is a litmus test for a good, self aware doctor. Search no more.

[Newcastlelad]

All my problems started 6 years ago and I never used to look online as it can often scare you. I was left on my own about a couple of years ago as my Neurogentics Dr left her post and it still has not been filled after all this time. I had no choice but to start researching. I had a really good GP at the time who admitted he had no ideas what was going on and was more than happy to look into my ideas. After looking for just a little while I was convinced I had auto immune problems. My Dr agreed to run the APS bloods and it came back positive and we were getting somewhere...…...until he left! I have tried so hard not to tell the Dr's what I think is going on but after a while you have too. Your so right about a good Dr being able to admit there stuck. Thanks for your messages.

[HollyHeski Administrator]

Go along and see your practice manager and get referred to who you originally asked to see.

MaryF and Kelly have some excellent experience with this, let them guide you.

I know quite a few people that have been diagnosed with APS without a clot and some with a clot that the bloods come back seronegative. It's why we recommend an APS specialist that looks at the whole picture and not just one part.

You are entitled to this care within the NHS but sadly if you need/want to speed things up then see your specialist privately.

Wishing you well..

[Newcastlelad]

Thanks yes Mary and Kelly have given me some great advice Definitely going to push for the original specialist thanks again everyone for your kind words and help. thanks.