On the NHS hamster wheel

[KELC]

Hi there I'm new to the group and could do will some advice as to where to go and what to do regarding booking a private consultation. Appologies in advance fir ny long post but i am at the end of my tether.

I'm a 38 year old women. Having had lots of symptoms for the past 8 months with a collapse at work which was followed by a 5 wks stay in hospital and now have carers to help me with personal cares 3 times a day. Having to use a walking frame and wheelchair aswell as other aids. I was discharged with ? Functional neurological disorder and was under the neurology team awaiting a rheumatology apt which I have had now and she feel it could be sjögrens. I am not fully convinced given my severe disabilities at present. Have had result of recent blood tests which are:-

Anti Rob (60) >8.00

Anti la antibody 4.20

ESR 48

LFT ALT 42

Vitamin D 56

Complement C3 2.10

Postie atypical P-ANCA pattern

Lupus anticoagulant- demonstrates persistent positivity

TSH 5.5 (I take levothyroxine for this)

Summary symptoms and past history

2 miscarriages in 2007 at 16 wks and 17wks

2012 migraines back problems and severe Fatigue aswell unable to put one in front of other.

Chronic back pain given physio in 2012 which didn't help. They said I had a weak core. Had physio but didn't really help

Heart burn since diagnosed with hypothyroidism given Lanzoprozole in sept 2015

5 mths of severe right handed pain unable to clench my fist and pain in my shoulder. Pin and needles. Right leg feeling heavy and walking becoming difficult. Unable to walk with a balance problem.

The day before attack I had pain in the back of my eye. Awoke with several pain at the back of head which continued then the collapse. 19th Jan Had monthly 10-11 days later

Ear problems like I have something in my right ear aswell as slight problem with left as though someone has covered my ear

Hug type pain around body under bust

Severe pain particular in right side of body.

Following physio experienced extreme pain in affected side aswell left sided weakness and unable to clench my left hand

Instances of coffee colored urine with blood and protein in urine - dip stick test confirms thus then lab results ok

Incontinence

Blood clots In my right leg

Night sweats

Extreme Fatigue

Episodes on semi conscious state

Hair loss

Dry mouth

Rash which appears then connects and seems be affecting when doing physio etc

Blisters on my toes and heel

Ulcers in mouth

Tickle on the roof of my mouth

Suffer with soar throats and voice goes hoarse.

Thank you in advance of your response

[KELC]

Forgot to add I have a chiari arnold malformation on the head too discovered 2012

[Footygirl]

Wow KELC. What a tangle you are in. I cant begin to sort out all your symptoms. I am just so sorry that you are feeling so bad. I hope your docs can help soon.

The only thing I can relate to is affecting fullness in your ear. I have Menieres Disease which affects balance and can cause hearing loss in either or both ears plus tinnitus, plus a feeling of something in the ear usually just before a "drop" which is a violent onset of vertigo which leaves me clinging to the floor as if I am going to be flung off it, vomiting all the while. Yes, attractive I know!

Other than that I have little experience. Once the sun is up I am sure you will get plenty of support and help from our great posters.

I do hope you have a clearer idea of your ailments soon. Please know you are not alone. We all have checkered histories with multiple symptoms that seem to take ages to resolve into diagnoses. Hang in there Kelc.

Gentle hugs

OXOX

⚽️

[KELC in reply to Footygirl]

Thank you so much for your support footygirl it means alot. I have lots of family and friends support although feel so alone at times xxx

[Footygirl in reply to KELC]

No one can know unless they share these problems, helpful though loved ones can be.

We are with you. We know.

Hang in

⚽️

[minnime63]

Sorry this is all happening to you... I'm not great at reading bloods, but had a thought about the LA antibody. Has anyone suggested Hughes Syndrome to you? I would ask a medic to interpret your blood results and specifically ask if you are LA positive. Hughes is diagnosed if there are 2 LA positive results taken 13 weeks apart. There is a group on this site that is very helpful. I have Hughes and lupus (often they go hand in hand). Good luck, and let me know how you get on. xx

[KELC in reply to minnime63]

Thank you for your help minnieme63, I will look at this xx

[KELC in reply to minnime63]

Hi there minime63 just wanted to touch base with you about the LA antibody results. That was my latest result but have had a few since November which are as follows

November anti ro 8.00

anti la 3.70

February anti ro 8.00

anti la 3.20

April anti ro 8.00

anti la 4.00

May anti ro 8.00

anti la 4.20

I really need to get a good specialist to review me. Do you have any ideas. Looking at London Bridge lupus centre and a Dr Karl. What do you think? Xxx

[minnime63 in reply to KELC]

Hi KELC, I was in the same position as you. Local rheumatologist diagnosed me then discharged me!. I asked my doctor to refer me to Professor Beverley Hunt at Guy's and she was excellent, very thorough (and NHS). I now travel up to see her every few months. I now see her at St Thomas's as she has a clinic there for those with chorea. Last time at St Thomas' I saw another consultant, Karen Green who is also REALLY good. Have you been put on blood thinners? If not, and while you're waiting for an appointment, ask your doc if you should be on daily aspirin. Whereabouts are you? You can also ask to see a local hematologist. The website for Hughes has a list of local experts hughes-syndrome.org.

Please do pm me if you want any more info, or just to vent 😁

[KELC in reply to minnime63]

Aw that's good to know I'll have a chat with my gp although I can't possibly wait 17 weeks for a referral, yes I'm on Rivaroxaban for my blood clots but only till 5 June. I've now started with pins and needles in my left hand which is how it all started in my right in sept. The only problem then us I'll have no arm to compensate and help me do things if it carries on.

Xxx

[baba]

Please read this site

hughes-syndrome.org/

It's about Hughes syndrome/APS/Antiphospholipid syndrome/"Sticky blood"

One condition many names!

Many of your symptoms fit and the positive lupusanticoagulant blood test.

There is also a very helpful Hughes Syndrome forum here on HealthUnlocked.

Best wishes

[joanne27]

to KELC

I WILL GET BACK TO YOU SOON I WILL TELL YOU MY STORY I DONT WANT YOU TO BE WHERE I AM MANY YEARS ON!

[Paul_Howard Partner LUPUS UK]

Hi KELC ,

Welcome to the group. Have you been seen by a rheumatologist before? If you do wish to pay for a private consultation, the London Lupus Centre at London Bridge Hospital is the main place to do this.

If you would like more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[KELC in reply to Paul_Howard]

Thank you Paul_Howard. I have made contact with a lady called Alison there. She suggested dr kaul given my situation but I'm still a little apprehensive. I haven't got an endless pot of money and one consultation will be all I can have privately so I need to get the right consultant. Do you have any recommendations or know what be my best option?

Thanks

[Paul_Howard Partner LUPUS UK in reply to KELC]

HI KELC, I wouldn't feel comfortable giving a recommendation for one of the consultants there above another because personal preference can play a big role in the feedback I receive. Sorry.

If you haven't seen a rheumatologist before, could you ask your GP to be referred to one on the NHS?

[KELC in reply to Paul_Howard]

Totally understandable Paul_Howard thank you for your honesty.

I have seen a rheumatologist who thought I may have sjögrens but couldn't be certain and didn't really seem very confident as my case seems to be complex. I can ask for a second opinion although I'll be waiting for another 17wks. Ironically I work for the NHS answer they make end up loosing me my job.