Mixed Cognitive tissue disorder : Hi all thanks... - LUPUS UK

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Mixed Cognitive tissue disorder

Hi all thanks for your support I’ve seen doctor de Cruz just now and he said he thinks I have raynards

And mixed cognitive tissue disorder or a lupus like condition.

He also said my legs were weak and asked about my swallow he wants to see me on the nhs at guys hospital to run further tests xxx

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Excellent news Jade....did he give any indication of timescale?? Well done! happy for you to be getting somewhere finally! xxx

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Thanks 🙏 no he said he will write to my gp and wants to look at my finger nails whatever that means under a telescope or something like that and re run all bloods xx

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? Someone will be along and explain about fingernails...delighted he's taken you under his wing!...and you should have more support from your GP with a D'Cruz letter on its way! xxx

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Thanks I hope so xxx

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Dose it hurt xx

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No a bit. A tiny drop of oil is put on your fingernail, then they look at the capillaries underneath via a microscope.

Easiest test I’ve had xx

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Glad to hear that lupiknits xx

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Hi Jade, isn't he such a lovely man? His my knight in a white coat. I hope I remembered your name correctly.

He does the nail thing for all patients that have raynaulds. Its harmless, they look for abnormal capillaries .

You know what I like bout him, he defines most illnesses as Lupus like but when you get a copy of his first initial letter he will write what he suspects. I feel he does go back and researches symptoms and tries to slot them all in.

I am slightly frustrated at the slow pace in them medicating me, infact I now feel like abit of a guinea pig. They are waiting for my disease to progress, kind of like a study case but for me the return on this is a long drawn out suffering.

When you see him for your first NHS appointment, he will take loads of blood from you. Bloods you have never had done before, he screens you for the whole catalogue of illnesses (I ACTUALLY HATE CALLING THEM DISEASES). You are in good hands darling.

Did you mention your unsuccessful appointment with the other specialist you see at London Bridge? xx

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Haha .. knight in a white coat!

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That's a very good way of putting it Kay! A joy to behold! xxx

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Hoping they're just working on the risk/benefit thing Lisalou and not treating you as a guinea pig...though the little oinkers are the most cuddleable things put on earth :) xxx

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That was Lisa’s description of her “knight.” She is funny. Being tested like a guinea pig would be awful. But the risk of improper treatment when you are still working patients up would be too big in some cases. Unfortunately, the wait time for specialists are long, and often in complicated cases like Lisa’s they need input from other doctors. To me, these are the times when it is the hardest on patients to not get the referrals needs. Someone here with lupus and probable APS just mentioned a two-month wait to get seen by a hematologist in the U.S.

Kay

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Yes, just re-read Lisa's reply thanks...agree about the waiting times during diagnosis, came across an older post about a 21 month list to see a rheumy in one part of the UK! xxx

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Crikey!!!!!!

Don’t get me wrong I feel grateful to my D Cruzzy, but this process is sooooo slow. I’m definitely a complicated one but they don’t listen when I say my dad is seronegative. I’m sure this clue could be my golden gate x

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I have to disagree. I don’t thjnk anythjng is getting by your “knight.” Your one positive auto-antibody and your symptoms have clued him in already, I suspect. He wants those consultations, though.

It would be better if they could at least tell you when your appointments are. Has to be so frustrating.

XK

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Painfully slow when you're suffering all the time and have the weans (scots for wee ones!) too...but maybe, just maybe Cruzzy :) will be the one to unlock the golden gate! (and here's a guinea pig cuddle OOO) xxx

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Unbelievable .. 21 months to see a rheumatologist. I keep reading about a world-wide shortage of rheumatologist. X

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Maybe there's a job waiting for us! Talk of training up nurses to be doctors here to plug the gap! xxxx

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It is already happening in the U.S. and physician assistants and nurse practitioner are doing a great job. Patients seem to prefer seeing them for a lot of conditions.

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I had an appointment with the physician's associate in our rheumatology department once and it was one of the most useful appointments I'd ever had!

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Thanks Lisa should I be worried about my legs ?? He did say to me I don’t think you need treatment yet .. so I guess that’s my hydro gone 😣

Why would I have brain lesions with

McTd?

How are you doing xx

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I’ve no idea regarding the brain lesions , but rest asured that will be something they will look into.

I believe a lot of these Illnesses can cause weakness of some kind so try not to stress too much, easier said than done I know.

Did your GP ever do that referral to the other hospital you recently went too? I can’t remember the name sorry, the one who gave you the hydroQ? Xx

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Thanks Lisa yes they did however I was advised by doc de Cruz to stay with my original neurologist as he said he is never ever wrong and he is a very clever man I feel with that recommendation I should stay possibly with dr Malik xx

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I still have no medication tho xx

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I never got medication until I see him on the nhs.

Once he had done the full bloods. Hold tight.

Definitely go by his advice.

You just need to check with your gp if that other referral was done. If it was done under a 2nd opinion referral you may need to advise them that you would prefer to go to D Cruz

X

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Thanks x doctor de Cruz is the only remy that I’ll see via the nhs it’s just neurologist who I got the second opinion but I did tell them it was for a second opinion should I call Malik office ? Xx

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Hopefully you will be ok as they are 2 different specialists xx

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Oh so pleased for you...congratulations on your determination!!! Incredibly well done!!! Thank you for keep us posted about your journey so that we can be encouraged and inspired. I appreciate that you are having to be hugely patient whilst your tests play out but please know that my most supportive thoughts are with you, with very best regards, Lily

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Thanks lily it’s not a 💯 confirmed yet but it’s the first time a doctor has said yes I think your right something is wrong and it’s not all in my head. And willing to do further investigation mctd fits me he said which is something no one has said before cx

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well done really pleased to haer things progressing, Lou xx

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I'm so glad that you're getting somewhere jade..it's a long n arduous journey but u r getting listened to now n investigated..onwards n upwards!! 🤞Xx

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Thanks krazykat I hope so o the right path I hope he called me I interesting and took copies of all my notes and said he will put it all together for me but it’s definitely something xx

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I honestly believe this man does take it home and pieces you together, watch out for his first letter.

He appears to enjoy his job and puts effort into you. X

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As far as I can see, Dr. d Cruz is a world authority in lupus and APS. In articles, he stresses the importance of recognizing the various aspects of APS, including MS type symptoms.

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😬 this sounds so like me. I’ve said for a while if I didn’t have skin rashes I would be convicted it was MS. X

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Such good news for you! Have been so aware how despairing this has been for you and also periods of ups and downs after your various appointments. So glad this one has got you facing a diagnosis direction and I know it means everything when a consultant acknowledges that something is wrong. All kudos to you for staying with the fight for answers.

Panda x

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Thanks so much yes it really dose mean a lot I do believe he is the doctor for me I was diagnosed with penisous anaemia years ago via go only found out yesterday it’s autoimmune 🤦🏼‍♀️🤦🏼‍♀️

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Jade — I think you were fortunate to have a very senior rheumatologist evaluate you and move forward toward an understanding of your symptoms. I never heard, based on your posts, that any of your doctors thought this was « all in your head. » The first neurologist was planning to repeat your MRI. These are very expensive tests and done only when justified. The rheumatologist you saw recently thought it was « not lupus » but left open APS. He seemed to think the neurologist would be the best person to follow you at this point. I think what all the doctors are saying is that there is something going on but it has not expressed itself in a way they can clearly define. They seem to all be considering an autoimmune condition.

I am just giving my opinion because I think there is a big difference between « watch and wait » with suspicion of a particular type of illness and « psychosomatic. »

It sounds like you are in good hands. You seem closer to getting a diagnosis.

Better days ahead.

K

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Thanks Kay for your reply your right I guess in a way however Physcosomatic have been said in appointments due to the recent death of my mum . However it wasn’t recorded in the letters. I have a real hard time trusting doctors as so many failed my mum but I guess they are not all like this.

My neurologist said I think your fine and laughed this is why I asked for a second opinion.

Dr kaul left open aps but no follow up as he wouldn’t see me via the nhs and once the aps came back negative I was stuck again.

I did tho get his letter only yesterday when I was back in London seeing doc de Cruz which did state I could have uctd but this wasn’t discussed in my appointment but I guess they rethink and think again and maybe ask each other’s opinions.

Yes I am very fortunate to have doc de Cruz on my side I have had to push so hard to get there and paid 1000s out in scans because I’ve been fobbed off Via nhs so I guess this made mad too.

I hope there is better days ahead he said i was interesting 😂 and he is the first person I’ve seen I’ve felt wanted to help with a follow up plan ect xxx

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Yes, I think it is important you have a plan for follow-up. It is good to hear both rheumatologists are considering undifferentiated connective disease. The new way they seem to be sub-grouping UCTD is « stable UCTD » or « early UCTD. » In the first years a minority of patients progress to a disease they can classify and others stay the same. It is very confusing but does make a lot of sense when you think about it. The good thing is you will be watched by a team who see complex, « interesting » patients all the time.

Best of luck

K

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This is true although it’s only a possibility I think this will be the out come thanks for your advice and interest it’s much appreciated xxx

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I have UCTD with abnormal brain MRI. My antibodies are low level and not always positive. Makes these diagnoses very hard. They will probably keep testing you, though. Happy to help in any way.

K

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Just like me possibly how are you do you mind if I ask if you can live a normal life I have my children to think of this is all I worry for

Do you have muscle twitching too ? Xx

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I am doing well. I have always had weird neurological symptoms— light-headed, tingling hands and feet, numbness in face, even what was described as “loss of consciousness”. I do have low level anti-cardiolipin antibodies. I am sure they see testing and re-testing you for all of these antibodies. The first rheumatologist did mention to you possible APS.

I did start to get twitching — legs and arms would jolt. Neurologist thought it might be the kind you get while dosing off but was not sure. It has pretty much gone away.

I do take aspirin, Topamax and Effexor. Once they find out what is going on with you, they may feel more comfortable starting treatment.

Hope my experience is encouraging. I know it is scary. I was always able to work. Hope you will head in the same direction.

K

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This is encouraging thank you for sharing I really appreciate it . I am worried but on the same hand I know I’ve got this xxx

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Hi Buckley123,

You may find out factsheet on 'LUPUS: and Mixed Connective Tissue Disease' helpful - lupusuk.org.uk/wp-content/u...

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Thanks xx

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For information on APS/ Hughes Syndrome see the following:

ghic.world/

healthunlocked.com/hughes-s...

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Thank you xx

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I was diagnosed with mctd in 2009 👎👎👎👎😤

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How are you now xx

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I was 1st diagnosed with mctd after being hospitalized with pneumonia. It wasn't until 2014 that things started to ....well get shit 😱 I woke 1 Sunday morning with what I thought was severe stomach ache ? Chronic pain on the left hand side just below my rib cage I went to A&E and 59 days later I woke up from a induced coma due to me having a pulmonary haemorrhage my lungs had a MASSIVE bleed. This was down to my mctd .It was and still can be horrific the trauma of the induce coma left me with post traumatic stress unable to walk talk eat basically I couldn't do anything I then spent a further 4months in the hospital learning to do things again ie.walk and being treated with chemo (the pain I cannot describe 😷😖😖) throughout my body for 6months high dosages of antibiotics.

For my Raynaud's in my hands and feet both which are severe I have a iloprost treatment around late September by IV everyday for 5 days 7 hours a day the treatment leaves me with awful migraine and nausea. I didn't have it last year because in Nov 2018 I again was taken to hospital after suffering with chronic diarrhoea it turned out to be CNS vasculitis and because I had no memory of the ambulance coming etc they gave me a MRI which showed small clusters of blood clots on my brain !!!!! So they wouldn't go ahead with my iloprost.so I've been prescribed sidinefil (Viagra) for my Raynaud's as this works in the same way as iloprost by opening up your blood vessels although I still get chronic headaches with the Viagra the same way as iloprost.

Life chucks shit at us sometimes and boy I've had and still do get it chucked at me health wise I just think it shows that when your at your weakest and get through it live with it ,it shows strength 💪💪💪of character .

Again all because of this invisible disease😬😬😬😬 mctd .

I was also diagnosed with breast cancer in 2017 (not caused by mctd)

I feel pants , I owe my life to the fantastic NHS nurses ,specialists ,consultants,physios,ICU staff and nurses they are my 😇😇😇😇 I had a 1 in 10 chance of surviving whilst in the coma !

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Good appointment nice to here

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Thanks xx

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What's raynards? Did you mean to say Raynaud's? Usually people w MCTD have Raynaud's - fingers turn white when exposed to cold, then blue, then red...

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😂😂😂yeah that’s what I meant x

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Ok. I use nitroglycerin gel 2 percent for Reynaud's. Works well for not too severe cases...

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Thanks 🙏 xx

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This is why I love this site so much. I always manage to smile at something

I have raynards too 😉. I call them my death hands xx

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Sidinefil Viagra

Iloprost

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?x

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I was diagnosed with MCTD when i was hospitalized with pneumonia. It wasn't until 2014 that things started to ....well get shit 😱 I woke 1 Sunday morning with what I thought was severe stomach ache ? Chronic pain on the left hand side just below my rib cage I went to A&E and 59 days later I woke up from a induced coma due to me having a pulmonary haemorrhage my lungs had a MASSIVE bleed. This was down to my mctd .It was and still can be horrific the trauma of the induce coma left me with post traumatic stress unable to walk talk eat basically I couldn't do anything I then spent a further 4months in the hospital learning to do things again ie.walk and being treated with chemo (the pain I cannot describe 😷😖😖) throughout my body for 6months high dosages of antibiotics.

For my Raynaud's in my hands and feet both which are severe I have a iloprost treatment around late September by IV everyday for 5 days 7 hours a day the treatment leaves me with awful migraine and nausea. I didn't have it last year because in Nov 2018 I again was taken to hospital after suffering with chronic diarrhoea it turned out to be CNS vasculitis and because I had no memory of the ambulance coming etc they gave me a MRI which showed small clusters of blood clots on my brain !!!!! So they wouldn't go ahead with my iloprost.so I've been prescribed sidinefil (Viagra) for my Raynaud's as this works in the same way as iloprost by opening up your blood vessels although I still get chronic headaches with the Viagra the same way as iloprost.

Life chucks shit at us sometimes and boy I've had and still do get it chucked at me health wise I just think it shows that when your at your weakest and get through it live with it ,it shows strength 💪💪💪of character .

Again all because of this invisible disease😬😬😬😬 mctd .

I was also diagnosed with breast cancer in 2017 (not caused by mctd)

I feel pants , I owe my life to the fantastic NHS nurses ,specialists ,consultants,physios,ICU staff and nurses they are my 😇😇😇😇 I had a 1 in 10 chance of surviving whilst in the coma !

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That’s awful I hope things improve for you xxx

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Hi. I don't know too much about your background but saw you mention muscle spasms and twitches. I started getting these 20 years ago. I saw a neurologist back then who diagnosed myoclonus and dystonia brought on by medication for depression. He said it would go away when I stopped the medication. It didn't.

I sort of just learnt to live with it for the next 18 years and then a few years ago I developed inflammatory arthritis and was put on hydroxychloroquine and the spasms and twitches and jerks all but vanished.

I have since been diagnosed with psoriatic arthritis, but I think there is also something else going on.

Would be interested to know what the outcome is for you.

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Hi yes I twitch all over even my tongue 😣

I have muscle weakness on the neck shoulder and legs and being tested for Myositis i think they think it’s a uctd I hAvemt had any medication yet I am keen to get a actual diagnosis and treatment as I want to limit damage as much as possible don’t google twitching I have and frighten myself to death. I do have unexplained brain lesions too xx

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I think over the years I have lost some muscle somewhere from my shoulder to my hand, that results in me not being able to do some things with my hand. It's exhausting.

Hope you get some decent treatment soon. I've seen Dr Kaul a couple of times and had mixed experiences, but Prof D'Cruz is in really high demand so fingers crossed for you. x

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Thanks I’ve seen them both too and your right doc de Cruz is the best.

I didn’t know I had weakness mine seams to be over night comes and goes xx

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