Private appointment : Hi Guys. I have... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Private appointment

donnabrain
donnabrain

Hi Guys.

I have just booked myself a private appointment with Dr Sanna.

I am not in a position to go more than once , am going purely to get my NHS treatment back on track, after being discharged last October by the Lupus unit.

My reasons for this post are twofold.

Does anyone here see Dr Sanna and is he good?

And does anyone have any tips as to how to get the most out of a one off appointment, I e what sort of questions should I be asking and what information should I have at my fingertips, etc

32 Replies
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KellyInTexas
KellyInTexasAdministrator

Hello Donna,

I want to take this moment as a reminder to all- that we cannot name shame any doctors on the forum- so just in case any here have had a less than stellar experience with a physician, always best to ask the poster if it’s ok to private message them, and then explain your personal experience.

It may or may not be relevant to the poster, and may or may not be consequential in influencing a decision in choosing a physician, as we are all different.

Donna, I will tell you that at the London Bridge Lupus Center, each rheumatologist will sub specialize in something slightly different.

At the time I went, in 2017, four out of the seven specialized in APS as well as lupus.

Of those four, one had a focus on cardiac issues, one neuro, one vasculitis, and I can’t remember the other.

I chose Natasha Jordan because she listed Vasculitis in her CV. I had already a fab cardiologist and neurologist in Texas, but my clotting and stinging veins were baffling my doctors. It was a weakness in my care here in Texas we all needed help with.

I was seen every 18 months from that point on in the UK. She was wonderful at referring me to other specialists in London to work with her when she needed a deeper look- like Hannah Cohen- who then Sent me to her colleague Prof Toby Richards.

Prof Natasha Jordan held her last Clinic on Dec 6 2019 to devote her time to her NHS practice, but felt with my particular set of APS issues, Prof David D’Cruz would be the correct fit for my presentation.

I encourage you to look at each Doctors CV and see what they published papers about.

Thank you.

Hi

I found Dr Sanna a very pleasant guy who gave me a lot of time at an NHS appointment. He seems a very competent Doctor and explained fully his theories and reasonings. I can also tell you that Dr Sanna told me personally that he does not agree with a degree of Prof Hughes work and findings. I never saw him again as he wished to remove me off of Warfarin and I didn't want to come off it.

Good luck

Kaz

Thank you.

Can I ask please where it was you saw him as an NHS patient

Guys and St Thomas's.

Kaz

Ty

whaleroad
whaleroad in reply to veganworld

Interesting. Was he specific about what he disagreed with?

veganworld
veganworld in reply to whaleroad

Not really specific just in general. I completely believe in Prof Hughes so this did not sit well with me. He said he didn't agree when he was a young doctor as well. He said things change medicines and opinions change over time but he was always a little sceptical. I appreciate all Doctors and their training and knowledge and have to accept this was his opinion. I travelled by train for the appointment and didn't even have any blood tests. All he was interested in was taking me off Wafarin that I had been on for twenty years. The trouble is I cannot function without it. Even if INR gets a little low I feel awful. So we had to agree to disagree. I think his intentions were good and this was his opinion.

Kaz

Lure2
Lure2 in reply to veganworld

May I ask you "veganworld" if you are off Warfarin now?

I read what you have written and I wonder if you get more than migraine as symptoms when INR is too low. You say you can not be without it. What Specialist is now treating you with Warfarin if you are still on it?

veganworld
veganworld in reply to Lure2

I get fatigue, migraine and feel like I am trying to walk through treacle with a clamp each side of my head that is tight. I have no energy and feel well muggy. Legs feel heavy and I can't remember anything properly and get my worst muddled. I feel awful and as soon as I am back in range I feel normal. When I have had to come off it for operations I end up having to lay down as it plummets as I feel woozy. I have had a PE and Prof Hughes listened to my family history which is all auto immune seizures factor five Leiden blood (as is mine). He also discovered some mini clots on my brain.

I am under a rheumatologist and haematologist locally now. I saw them privately and then they both agreed to treat me under the NHS and fully support me. I went back to St Thomas's after many years when I saw this doctor as I was having new problems in my digestive area that I wanted to see might be related in some way. The whole appointment turned into a let's get this women off warfarin appointment which totally shocked and worried me. It was unexpected.

Kaz

I am still on Warfarin.

Kaz

Lure2
Lure2 in reply to veganworld

Hi again,

Can you hold on to that Rheumatologist and Hematologist and do they believe that you have got APS and need Warfarin? Are they knowledable of APS and autoimmun illnesses like many of your familymembers have had?

I am not a Doctor but it must be awful for you that a new Doctor suddenly suggests you to come off Warfarin after 20 years. You feel awful without Warfarin also when the INR is too low. You have had a PE and been diagnosed by prof Hughes himself also!

veganworld
veganworld in reply to Lure2

Thanks you

Yes I was extremely upset. I was told twenty years ago by Prof Hughes himself that I should start on Warfarin for life and that I would always be able to attend St Thomas's and basically they were the experts and they had my back and I was in the right place. I then got discharged a few years back after going there initially on a yearly basis where they always ran loads of tests. I was always told I could go back for advice if I ever had a problem that they might be better at solving. I had all these digestive issues and went back and was told I should come off the warfarin. was absolutely shocked. The people looking after me are not specialists in APS but seem to have enough knowledge to support me and they believe that I should stay on Warfarin. The Rheumatoligist I see has been to lectures etc and met Prof Hughes and he is very interested. The haematologist listened carefully to everything I said and believes I should continue on. It is all a bit of a mess but this Dr turned my world upside down at the time. I was waiting and waiting for the chance to go back there and super happy when I was on the train and it was not what I expected at all.

He has his own opinions and I feel I saw the wrong person for me.

Kaz

I have never been on warfarin, but what you described is how I feel now, and how I used to feel prior to my diagnosis.

At my best, I was on 75mg aspirin and hydroxychloroquine ,with an alternate dose, I believe 200mg every other day and 400mg in between.

My consultant said to me 3 years ago " I believe we have found the perfect cocktail of drugs for you " but then 2years ago reduced it and a year ago stopped it altogether.

I currently feel shit

Lure2
Lure2 in reply to donnabrain

Who did diagnose your APS? What symptoms did you have before Aspirin?

Who diagnosed your other many autoimmun illnesses? Why did you have Hydrochloroquine? For Sjögrens or RA?

It must be very difficult to know what is what diagnose? How many antibodies positive do you have? (for APS I mean)

donnabrain
donnabrain in reply to Lure2

Professor D, cruz diagnosed me in 2006.

My symptoms up til then were mainly falling asleep all the time, speech problems, memory problems, joint and muscle pain ( the muscle aches were caused by lack of vit D.

Feeling like I was wading through treacle , migraine.

All my children were premature and I had been hospitalised with 2nd and 3rd pregnancy due to bleeding.

I also had ibs.

I was fit and healthy until 2006.

I just slowed down gradually with these symptoms over a 9 months period until I ground to a complete halt in 2007, shortly after my diagnosis.

I fainted whilst in the que at the drs and when I came round my arm was stuck in a strange posture with the elbow pointing upwards and in a claw.

Oh yes I forgot, clawed hands and pins and needles was a symptom too.

After this attack I was bed bound for 10 days, and my right arm has never been the same since

Lure2
Lure2 in reply to donnabrain

Who diagnosed you for all the other autoimmun illnesses? Did you have positive antibodies for APS when prof D´Cruz diagnosed you?

donnabrain
donnabrain in reply to Lure2

Yes, had positive anti bodies, twice, three months apart, now negative.

Prof D,Cruz did shimmer test, bone dry, but my bloods for sjorgrens say I don't have it, but I have been told I do at my local hospital and I am treated for it.

Artificial saliva and artificial tears.

The hydroxychloroquine was prescribed at the lups unit to help with fatigue and balance.

I don't remember who diagnosed arthritis.

I also have diagnosis of fibro and thoracic outlet syndrome

Lure2
Lure2 in reply to donnabrain

You have a lot going on........Was it prof D´Cruz who stopped your drugs altogether?

What are you going to do now? You can not have all that and be without any drugs at all. I live in another country so I can only wish you the best of luck to continue your fight to get a Specialist who knows how to treat you.

Why won't they give you Warfarin ? I am thinking I was lucky to have been able to see Prof Hughes and get on it. It really does make a huge difference. There is no way I would give it up without a fight.

Kaz

I don't know.

It,s never been. Mentioned.

I was put on aspirin in 2007.

Hydroxychloroquine some years later.

It's all very odd. I had my PE after I contracted a virus. They then went on to diagnose me after lots of tests (finding further mini clots) and appts covering family history with Prof Hughes. Now with Covid a lot of people are complaining of post Covid fatigue and are complaining of the same symptoms. Most of these people will have experienced clotting as that is what it does in the way of mini clots. I cannot remember if you have ever mentioned having clots but if you have it would be worth a try for you. I think many more people because of Covid are going to be thrown into the same situation as us. Someone even mentioned recently that it could possibly cause APS. It is a really tough subject for doctors (APS I mean not Covid although that is really tough also) my problem was that I had found something that worked for me for all these years and Dr Sanna wanted to take me off it. I found his thought process extremely insensitive to what life is like living with severe fatigue, mugginess, vice like headaches, memory loss etc everyday. For him to sit there and have no compassion was awful for me personally. He wasn't listening. He may go on to be right and I could have a bleed but I would rather have the choice myself.

Hope you feel better soon.

Kaz xx

Yes, that was the reason Prof D,Cruz took me off aspirin, stating that current thinking is that the risk of a bleed outweighs the risk of a clot.

Yes, pretty much what Dr Sanna was saying. The way to treat APS is to prevent clots with blood thinners so they are going against Prof Hughes thinking about how to treat this. My Rheumatoligist discussed this with me when I asked his opinion and he said bleeds could possibly happen as could clots. The fact that I can have almost a normal life on Warfarin I opted for that. They had no alternatives really.

Kaz

KellyInTexas
KellyInTexasAdministrator in reply to whaleroad

Whale road, are you on blood thinners for APS? Did you personally see and speak with Dr Hughes regarding your APS or Lupus ?

Did you find the help you need with warfarin ultimately? Can we help you with that-helping link you with a specialty APS doctor in your area?

Each patient is very different, and their comorbidities will drive a very specialized and individual treat plan. ( I have discovered this, like so many of us- probably you included- through a long and difficult journey.)

HollyHeski
HollyHeskiAdministrator

Hi, bullet point all your questions and have any medical notes/tests you have done in the past.

List all your history, symptoms, drugs taken especially if helped. Family history too.

If you can take someone with you, for support.

As you've said above why you've made the appoitment, have that clear at the beginning to explain.

It's a shame you have been pushed into this route, remember you deserve the right treatment whether NHS or private.

I'm really hoping you get your answers.

thank you

MaryF
MaryFAdministrator

I agree with what you have been told re doctors, we always highlight the positive on here regarding individual doctors, and never name and shame. It is important as so clearly laid out by KellyInTexas that you do look at their individual backgrounds, in terms of their particular specialist field. I have never seen this particular doctor, so can't personally comment, as when I went I was lucky to see Professor Hughes himself. I hope your appointment goes really well. MaryF

Well I had a good long chat with him and he he did a thorough exam.I am in agony today lol.

He explained why I should not continue aspirin and ghat bit really made sense.

He asked what I wanted out of my appointment and I said to not be left unlocked after or high and dry.

He said my gp should be looking after me.

He said I don't have RA.

I think I do.

And he thinks my dry eyes etc is down to fibro.

I was actually diagnosed with fibro in 2005 and had forgotten about that.

I have previously been told by 2 or 3 different medics that I have sjorgrens, but apparently there's no mention of it in my lupus unit notes.

It was Prof D, cruz that did my shimmer test.

Bone dry, both times

I think my problem is my bloods are often negative.

Both my local hospital and my gp have commented before that I can have very obvious inflammation visible and palpable, but my bloods say no inflammatory markers 😑

Lure2
Lure2 in reply to donnabrain

I am very surprised that so many here are asked to go off drugs and also hear that they have not the diagnoses they have been given!!

We are not allowed to name the Doctors here who do these things. It is very difficult to diagnose these autoimmun illnesses that often go hand in hand. Therefor it is so very important that we have a Specialist who really knows what he is doing and doing it correct also.

This has been a site for Antiphospholipidsyndrome only and that would be easier than to answer to Sjögrens, SLE, RA, APS, Thyroidosis and Fibro etc etc.

Donnabrain please ask for copies of everything.

Some Doctor has now told you that you do NOT have RA and Sjögrens. Sjögrens should be Fibro. You have earlier been diagnosed with RA and Sjögrens!

Also you should not take Aspirin for your APS. Nothing was mentioned about APS and Lupus.......?

I must say that I can not understand. I long for prof Graham Hughes. He knew his job.

* shirmer, not shimmer.

Damned tanned autocorrect

** what IS the matter with my phone, lol, I didn't even type the word tanned!!

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