Hi just trying to.find out about Harding of the skin on my arms and legs .It looks puckered not been diagnosed yet ..all they say is lupus like and mixed connective .But mines seems to be accelerating .Lung problems vasculitis Raynauds. But as each day passes it is way worse .My phone call from my GP has been moved to later but I do see rhumi at the end of the month. They noticed loss of power in my right side .Thinks just got worse after a spasm now got a small scar on my forehead well it has been there since January but getting bigger got facial changes and skin on my face tight now and all different colours. Calcium deposits in 2 finger is this normal at the start of scleroderma and do the meds work to get it back a bit mines don't really seem to help .I have lost faith in getting help from the hospital After I disagreed with the last rhumi When he said I had depression and a mood disorder. Saw a lovely neurologist that told me they had failed me .No mood disorders or depression of migraine that they sent me to him for My symptoms in January was crainial vasculitis. They discounted that because of blood test .But now bloods showing up a lot more .I honestly think this place seems to me to be the best place to get information.
Many thanks for any help Miriam X
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Hi,It sounds like you are having a hard time getting a full diagnosis which is so important!
Don't give up, keep pushing & fighting.
I can relate to a lot of your symptoms.
I have acute diffuse cutaneous system sclerosis ( scleroderma).
I started to have weird issues in 2017 whilst in Spain., difficulty in walking, pain in various areas of my legs & hands. I went to bite on an apple only to find my mouth wouldn't open as before. It felt like my teeth weren't fitting properly in my mouth.
My legs went red raw as if I'd been burnt
on the beach & they were intensely itchy.
I went to see a private German Doctor who performed numerous blood tests & infor med me all my body was inflammed. After a second round of blood tests he diagnosed Systemic Sclerosis.
Armed with the blood tests & a letter from him to state I needed urgent medical attention, I made an appointment at my local GP.
At my initial appointment he'did never heard of my illness which did frighten me & I thanked the ammunition from the German Doctor.
So it may be an idea if possible to have a private consultation so at least you know what you are dealing with. Then with this information you can push for suitable treatment.
If it iis Systemic Sclerosis each case is different & individual.
It can be range from limited or the worst of the worse with my diagnosis.
I had to take things into my own hands after the disappointing news that a consultant in Scleroderma at my local hospital didn't see me as an urgent case even with the German Doctors letter & findings.
I was distraught, in so much pain & totally couldn't understand this reaction.
I phoned a local BUPA hospital to see if they could help, yes they could though I had no idea at this stage what was in store for me.
Luckily my sister worked as a medical secretary at a hospital 40 minutes away. She identified a Consultant who specialised in Systemic Sclerosis & after a referral through my GP I went to see her shortly after. After an examination she confirmed the German Doctors diagnosis.
She asked me if I had ever smoked as she noticed slight lines above my top lip which was one of my face changes in the early stages. At this point she discussed the illness in great depth. & how the skin would tighten as the disease progressed.
I was admitted as soon as a bed became available ( 2 days later) & then started this very frightening journey.
At all times I tried to remain positive with a focus "I will fight this disease tooth & nail"
My skin was tightening over all my body apart from my back.
The consultant took skin scores from 17 areas on my body on a regular basis. Each area is awarded 3 points with a maximum score of 52. ( the worst scenario)
I was placed on Mycrophenolate after a few months, which normally controls the progression of the disease.
After another 2 months it wasn't working for me.
My skin score was upto a dangerous level of 48.
My Consultant discussed an alternative of a referral for stem cell treatment. I was told of the risks involved & decided to go ahead if I passed strict tests to show none of my organs had been affected & that my body could cope with this invasive treatment.
I was SO lucky & now 3 years on from this revolutionary treatment I am able to enjoy life & do most things I could before my illness though with a lot of limitations.
The moral of this story is to push for a true diagnosis & find a Consultant who specialises in that area.
You can then have confidence they will do everything possible for you supporting you with whatever it takes on your journey.
I hope my experience helps you in your quest for answers.
Thank you so much for your reply .So pleased to hear that stem cell worked for you .That it has given you some quality of life .I think you were really lucky to get it !
Does it resolve all the damage to the skin
.Or does it just stop it from getting any worse ?
I can only imagine how you must have felt at rock bottom when the meds didn't work for you .
I've been chasing and practically begging for help . There was huge errors and more or less dismissed me .Even after I had a NHS dermatologist tell them they should look to do more test for lupus as she was able to see blood work showed her that I had already had the blood work done with rheumatologist that show her something wasn't right! That was start of May I had I phoned to speak to rheumatologist and asked if it wasn't autoimmune what test could I do privately that could help me .He then told my GP .I had demanded he did an MRA to see if anything could be found .Which my GP found strange because I had informed her I had spoken with nuffield in Glasgow about cost and if they did that. I also had paid for private dermatologist that told me most likely burning scalp .But that didn't fit with the other symptoms.
So the rheumatologist told my GP I was developing a mood disorder or depression.
Only because I totally disagreed with everything he was saying. Even on the phone I was breathless he told me I was just letting things get to me .Total disbelief!! For a woman that walked minimum 60 miles a week plus gym and yoga ! Now these blood test have shown up indicating something lupus like .But as we know The test for scleroderma type is different from other ones .
I have got an private appointment with someone who has worked with 2 renowned ppl in scleroderma. But not until 6th October.
I would love to know if you knew specific blood test that would help me .
I am going to try and speak with the new rheumatologist on the 27th August and see if I can get her to listen .
But I fear October is too far off as most days just in bed or in a chair .I've had a lung test .When they did it they said there was something not right .But wasn't their place to tell me .I've even developed a small scar on my forehead that is now making it's way to my eyebrow .Forhead really tight. My friends last yr asked if I had botox on my forehead. Because it was tight and smooth.
I am 60 and had big frown lines all gone and forehead I told them felt stretched and smooth and my features were changing last yr .
Now one side of the face really white also got a few small red spots on my checks and nose also Raynauds on my face aswell as feet hands arms .Had GI issues since November. Too fingers got small spots on them that is very sore if I dont watch how I get up are really sore .Or to touch them Weakness down my right side .Trouble swallowing but have made a real effort to eat so my weight is good .
But yes got the redness that you had on my trunk and face really bad when I first get up .Hands and feet swollen and red .
Don't know maybe after taken prednisolone and nifedipine it seems to get a bit better .I am tired fighting now .But I know I have to keep going .
Sorry this is so long winded .
I really hope things stay well for you and having heard your story has helped me see I could turn this around .Just need to keep pushing forward and get a diagnosis.
My very best wishes for your future and thank you very much for your reply Xx
Yes I was extremely lucky in having the stem cell treatment. I only found out last year after speaking to my top Consultant in Sheffield who is running this pioneering treatment that I was 1 in only 20 people over the last 20 years that has had the treatment. It really blew me away when I heard this.
Unfortunately if the disease is not picked up early enough especially with the acute version organs are damaged which prevents this option.
This is why it's SO important to get the diagnosis as soon as possible.
My blood tests showed I was ANA positive which is a marker for Systemic Sclerosis.
My skin score is down to 23 so I'm making great progress.
My face seems to be the area taking its time but there is a notable difference.
I can open my mouth a bit wider & my nose doesn't look like a babies nose anymore.
I've been on predisolone since 2017 which at the start of my illness made my face look moon shaped. I have been reducing the dosage year on year as my body rejuvenates.
The swelling, redness & itchyness on my legs & hands has gone now which is such a relief.
I'm able to walk for over an hour a day & undertake a regime of daily exercises which has helped me rebuild my muscle loss.
I was given numerous leaflets from the hospital including mouth & hand exercises.
I've put back the weight loss of a stone back on again which dropped off at the beginning of my illness.
My swallowing is improved though I'm more aware of what foods to avoid e g toast, boiled eggs.
I'm on a low dose of Omeprazole, without which I would have terrible reflux.
At the beginning I did have a clump of cells bleeding inside my stomach. The only symptom being extremely anaemic causing weakness & fatigue. I had Argon treatment for this which seems to have resolved the problem.
I had incontinent issues with my bowles as my muscles had weakened.
This has got better though I'm unable to tolerate certain meats so eat more fish & vegetables.
You learn so much on this journey & especially how to listen to your body. There are days when I feel so tired & other days when I feel great. I accept that now it's part & parcel of moving on in a different way.
It's awful how this disease disfigure your body, really unbelievable!
I was on Nifedipine too but found it hard to get hold of so I'm now on Sildenafil (Viagra) which helps the blood flow & my secondary raynauds.
My grip is not good & I constantly drop things but a least I've learnt not to be too hard on myself.
I was lucky as my specialist offered me so much help on my journey, physiotherapy, physcology & hydrotherapy sessions. The latter was SO good it was the only place I could totally relax my body.
I didn't get any colour changes on my body though I did see many patients in hospital with Limited Systemic Sclerosis who had brown areas on their face & arms.
The disease has such a varied way of affecting each person so each of us is special in our own way.
I was 63 when this disease struck. I know exactly how you feel as I too was very active, walking in the mountains & enjoying different sports.
Had my consult with rheumatology on Friday. Told them all my symptoms she said it could be sclerderma. I let her say it rather than tell her I knew it was .I had 6 out 6 symptoms as you know .On top of the lupus she called it overlapping syndrome. Going to test my bloods in 2 wks to compare them to 12 wks ago .Not sure why couldn't they be done just now. But I will take it .Better than nothing .She also told me it would be another 8 wks before I saw her again !!.So not confident in getting help anytime soon .
I've still the private doc to see 5th Oct and hopefully the blood test might help her but each day is a drag .I've just resigned myself to it being in their hands now .My face swelling up is becoming the normal .I even feel the roof of my mouth shrinking!!aswell as my nose .But now understand that's it active then the tissue breaking up happens .
Sorry for asking Can you make new tissue later ?When on good drugs for it and get it stable Or does it go and hard to come back the red marks come and go with me aswell .?
Sorry for all these questions. I don't want to put you out .But you seem very clued up on .
But please only reply if you are fit and well to do so .I know how hard it is to get my brain to work most days now. I am happy dealing with facts and I know everyone is different.
Just trying to get more info so I know the right questions to ask them .And feel if I understand things better from the off it will help take some stress out it .Thank you so much Xx
Thanks, yes I've had a good day & accomplished a lot.I can't understand why you have to wait another 2 weeks for blood tests!Is your consultant a specialist in Scleroderma or just a Rheumatology Consultant?
If not you want to find one near you soon, you need to be under a top one!
Each time I go to see my super Consultant, my weight, blood pressure & bloods are taken as so much can show up, especially issues with the kidneys.
She also knew straight away at my first appointment that I had the disease & that was without any blood tests!
I'm not sure about the new tissue, I know in general Microphenolate is supposed to manage the illness though in my case it didn't work hence the stem cell treatment.
What medication are you on at the moment?
What area do you live in?
It might be someone can advise you of a good consultant from this site.
It's a minefield at the start of your journey, hang in there. Don't give up, keep fighting though I know with Covid it has made things so difficult.
Glad to hear from you 😊And you had a productive day 💕
This is the department head at my local hospital I saw due to the last one telling me nothing wrong with me . I think the problem is the fact with the blood tests is there is hardly anything viles to put it into !! .That has been on our local telly up here .nationwide shortage!! .
She said she wanted to have a delay to see if more of a change in my bloods with the lupus that came back that I had it .But tbh the never tested for sclerderma before now
She said think we might have been on the wrong tract.
But I had postive ANA and ones to do with lupus and a blood clotting one that I knew and they knew I already had when I was 25 .
I had already made an appointment at Edinburgh's bupa .Googled her she's well clued up with lupus and sclerderma. After the last doc telling me I wasn't ill I knew I had to try something the appointment was made weeks ago.....well last doc's take was depression or mood disorder or Migrane!
I had a great meeting with neurologist that they had arranged for me to see for mood disorder! ..After they had found the test that showed up I had lupus and the words saying sorry he had forgotten he'd taken them in May. In a letter they sent me .
I showed him and asked my symptoms he then totally agreed with me ..Neurologist even said 'they had failed me' my symptoms were typical lupus or vasculitis type illness and more MCTD from his take....
My son is going crazy for me to complain.I just want diagnosis and treatment.
But problems not going away at all.My neck is tight now as my shoulders .But if it gets any worse I will make contact.
Feel if I can get through these 2 wks then get blood results so I have it all to take with me for private consult...I am hoping then things will move faster
I am trying to do a good diet infact started celery juice..seems to help my tummy until then .But if anything changes I will make contact with them .Bed and chair and Telly will do me until I get to private consult.
Please 🤞 then the journey really just starts then as you know . Tbh would love if I could do treatment at home with covid .But don't know protocol for that .
It will give me time to educate myself in what they might do .Then I would at least be armed with the info I might hear them discuss. About what happens next .That is something you would have been through.?
Did you have any clue what they would do for treatment were you given options. ? I kind of work this way .I was in the NHS with my daughter for 30 yrs until her failed heart transplant.She was really rare very lucky to get her to 30 .But lost count of surgeries. But were in 5 differnt hospitals in that time
So I have a good mind for research and that's then my head sorted for to tackle what's next if you understand.
I know you'd have gone through all the emotion from scared to that lost feeling in all what you went through ! Can imagine loads of crap times when the treatment wasn't working for you .You are a true blessing for me !! 💕
It might be worth asking the group for any recommendations for a good consultant in Systemic Sclerosis ( Sclermoderma in the Edinburgh area. I'm under Professor Herrick at Salford Royal in Manchester. I know Professor Denton at the London Royal Free is mentioned a lot.
The issue with Bupa is the cost long term.
If I had gone down that route I would of lost my house & everything to pay for the stem cell treatment.
Hopefully you can just use them for a true diagnosis.
As far as options go, my disease was very aggressive & progressed so fast. It was a whirlwind!
I only had 2 options when the Microphenolate wasn't workng:
1. To continue taking Microphenolate & hope at some point it would halt the disease
2. To see if I was eligible for stem cell treatment & to see if I passed the tests for this invasive treatment.
I was between the devil & the deep blue sea!
I was in so much pain & knew I couldn't carry on as I was hoping for Microphenolate to start to work, so I grabbed at option 2.
Really I didn't have any option, I was fighting to survive!
Bear in mind from first starting to feel strange things happenning early 2017 I was in this situation by the November.
I was already prescribed Morphine & Predisolone at this stage.
Once you have the true diagnosis your Consultant will talk through how the disease can progress & what tests/pain management, physiotherapy & physcological support may be available.
Start a diary now with your daily symptoms & feelings.
This helps you prepare for your appointments & make sure you don't omit anything.
Jot down any questions you want to ask no matter how silly/appropriate they sound.
Take someone with you to write down answers to your questions as you may miss some of the answers.
I will keep my fingers crossed for you. Let me know how you get on..
Oh for sure I am only hoping for a one off visit with private and hopefully she can confirm and maybe direct me better at least all the blood test would already be done for her !! I believe she works in Fife with NHS that I believe is the center that treats sclerderma in Scotland. I am widowed and pension so paying private not a option long term .I am hopeful she would put me in touch with the best NHS sclerderma for me..It was my only option at the time when know one believes you .But least she saw tightness and red marks nose lost volume and other that made her say sclerderma on my last visit .knows I had tummy problems before even seeing them .
This is something private doc has treated I believe she worked under 2 doc's that were well known for work and research in the sclerderma so I am hopeful.
If no joy with her I hate to say it local will have to be .But I would ask our GP for referral for anyone else in the hope they would agree and hopefully they would be more clued up ..Don't know what we can ask for in terms of treatment or is it a case of take it leave it
You probably wouldn't have been able to get transplant on private let alone pay for it ! .
I know the don't do private heart transplants not that we needed it but it was told to us in a conversation..
You won the lottery with your transplant even getting a chance of it . I bet not a lot happening just now with covid going on .
Trust me to take ill at the worst time...The irony is not lost on me ..Any chance of anything I will grab .At this point nothing really to lose. I will let you know .I should probably just message you rather than this way .Not sure how it all works and what's normal. I was on the GCA because that was my GPS diagnosis start of Jan ...Hate to say it but I felt better on the meds thought it was it best I felt in a yr and half until they said it wasn't. Took me off the meds Then it all got way worse .I still have days I wished it had been and probably would have done well because I was walking loads doing everything really well .But went drastically down hill since .It just seems to have been a nightmare.But hopefully one I will have an answer to very soon 🤞💕Take care for now Xx
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