I just wanted to say a quick hello. Hope things are going OK.
Im having blood tests for scleroderma and APS. My symptoms include swollen purple fingers, purple red legs (levido reticularis maybe), hearing loss and severe tinnitus, blurred double vision, muscle spasms, pins and needles etc. With depression and anxiety having followed in the wake of these. I also lost my job and my home and my wife left me last year. So feeling a bit sorry for myself. But I know that there are others dealing with more and staying strong and Im trying to take hope and strength from their courage. Ive never been a religious person. This was maybe one reason why my wife left me. That and me being a bit of a pain soemtimes! But I have been searching for hope wherever I can find it. Anyways, I came across this link with two women with scleroderma singing Hilsong Oceans and found it pretty inspiring. I wish I could have their positive attitude. But tbh Im just exhausted and scared atm.
Would be great to hear how people coped with drawn out diagnosis process and the fears that can follow from reading too much on the internet.
cheers
Charlie
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charlieab
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Hi Charlie sorry to hear about your personal problems as well as your illness. I Can relate to all of them.It's not only awfull having to deal with this illness but to do it alone is even harder.I have defuse systemic Scleroderma with lung involvement. I,m still employed at the moment but I don't think I'm likely to be for much longer as I haven't been able to work for the last 3 months which is a worry for financiall reasons as well as for the sake of my sanity.I have two dogs that are a legacy of my son who's moved to new mexico. If it wasn't for them in would be deeply depressed. It's comforting to know that there are others in the same boat that you can call on as you can feel really alone at times.Well don't want to ramble on for too long. The best piece is of advice I would give you is to take everything you read on the Internet with it pinch of salt as this illness is so different to each individual and worry only exasperates the condition. Hope you feel better soon. Regards Sue
Thanks for your reply. Hope u are doing ok today. Its great to hear from someone who can relate to what is happening, though Im sorry that u are going through something similar. And sorry to hear about your worries about work. Have you discussed the posibility of reasonable adjustments (under the Equality Act if in UK)? Maybe part time or flexible hours or chnaged duties? I really admire that you have kept working and hope things go well for you. It must have been a real struggle at times.
Thanks again Sue and take care.
best wishes
Hugs Charlie - I get the swings. But as you recently said - you're nearly there now so please leave Dr Google alone and let your rheum work things out for you. Easier said than done of course and I'm diagnosed but still spend a lot of time asking questions and worrying my head off! Xx
Thanks for your reply and hope you doing OK. U are completely right about Dr Google. Trouble is that he has 24/7 opening hours and is free and there in the front room and resisting has proved impossible! Also getting a diagnosis has been a real struggle. The GP kept looking at things in isolation. It was just severe tinnitus, just visual snow, just raynaud's, jyst acid reflux, just purple legs (which were bizarrely put down to being too hot, despite teh concommitent raynaud's!!).
I think I may have hit as low as I could ever get atm and am still here. So I guess that means I have certain staying power. Im planning to try and do some volunteer work at a hospice nearby. Im thinking that keeping busy will be good. Though atm Im so down i think I would make the patients feel even more depressed, rather than cheering them up!
Poor you Charlie. I know just what you mean about the accessibility and availability of Dr Google.
Not sure the volunteering would help or not as I do this and it takes a helluva lot of my energy up. I'm sitting on boards as a lay partner though not practical or physical stuff.
I think using what we learn to help others here is probably just as useful - for me anyway. After all there are always people who will help the terminally ill, but far less who will help the chronically ill and those who are socially isolated by invisible illness - especially where rare diseases are concerned.
But having a name that feels right for your symptoms is half the battle won i have found - so hopefully you'll know more when you get the results back. The purple legs do sound very APS I agree. I get Livedo in my knees and feet but APS tests were all negative.
My husband once came with me to see a new rheum, who left me undressed on the bed for about ten minutes to hubby's consternation. When the rheum came over he commented to his colleague, "patient has some Livedo on knees and feet - test her for APS". A few days later I was looking at my husband's iPhone notes on this appointment and there was just one line which read; "she has libedo on her knees and feet". I wish?!!
Scleroderma can be detected or excluded by a nailfold capilliary test I believe. Well it was certainly excluded it for me this way a few weeks ago - but I still have secondary Raynauds - only mine is secondary to Sjögren's.
Thanks for your reply. What you say about chronically ill is very true i think. Soemtimes these are the ppl that the media portrays as benefit cheats/ scroungers when many are in fact unable to work. Your voluntary work sounds really interesting and rewarding. I use to be chair of a charity but resigned last year as wasnt really much good any more.
Im glad to hear that APS tests were negative and that they ruled out scleroderma but sorry to hear about the sjogrens. I dont think I can have that as dont have dry mouth or eyes. But not sure.
Can I ask a question about the levido reticularis? Please feel free not to answer if prefer. But is it there all the time or just when cold or when been sitting down a long time. Mine seems to reduce greatly when I run up and down (probably making the newly acquired arthritis worse in the process). And is dark as heck when been sitting for a while and also it reduces greatly when lying in bed, maybe because circulation works better then.
The thing about libido made me chuckle. Glad your husband went with you. I imagine that can be a great comfort having someone else there. I know i forget pretty much evrything that is said and have been asking friend to come along. Though she was good enough to step outside whehn I got undressed. Probably wise on her part bearing in mind what my legs look like atm
Happy to answer you Charlie. Mine only comes on when exposed for a while - not necessary when I'm freezing but certainly when I'm chilled. I never used to have it or Raynauds so I am assuming it relates to my connective tissue disease. My feet and knees go bluish purple (toes bright white with Raynauds - not a great look!)
My form of Sjögren's presents neurologically and in my circulation and GI system. My ANA is the pattern for Scleroderma and Polymyositis rather than for Lupus or Sjögren's. I've had dry eyes and mouth since I was a kid and always treated them topically so my eyes are only just starting to show signs of corneal damage.
My teeth were always a problem but are much improved from cutting all unhealthy foods and fruit juice from my diet.
I was initially diagnosed with RA six years ago but this changed last year when I had a lip biopsy which was 100% positive for Sjögren's. The presentation for me is very similar to MS. I have small fibre neuropathy everywhere and GERD, dysmotility at both ends and lots of other autonomic features. The fatigue is awful!
I'm on Mycophenolate - to increase to maximum dosage 3000mg soon but it's not helping much and I've been on it for six months now. I've tried all the other immunesuppresants (which did help but caused severe allergic reactions) so I'm not sure what's left for me really - but I do worry about the neuropathy progressing much further because it's giving me balance issues now and my BP spikes and troughs, temperature regulation is a mess, inability to sweat etc. This is the reality of Sjögren's that is often not understood by others with better understood connective tissue diseases or by GPs or some rheumatingists.
Plus the significantly increased risk of non Hodgkin's lymphoma for those with it as their primary disease is a worry. So I'm really relieved I don't have Scleroderma of course but Sjögren's has no systemic treatments and Mycophenolate increases the risk of Lymphoma. I admit I don't worry about any of this too much for myself but I hate the MS like symptoms with a vengeance!
I'm trying the Autoimmune Protocol Diet now in desperate effort to get back on an even keel energy wise and for my GI issues. So far it's just making me crave toast and marmalade with a passion!!
Dr Google has taught me loads about my disease where my doctors have mostly been ignorant about its neurological forms. I was asking if Sjögren's could be the underlying cause for years now. The John Hopkins in the US has loads of excellent information on this.
New rheum and neuro both much more aware though so I've been lucky since relocating a year ago. Dr Google has become a bit less relevant to me now thankfully! X
Thanks for your reply. It has really helped ppl providing info and support.
tbh I think I mght have fallen into the mistake of assuming that sjogrens is easier to deal with than it is to spell. Sounds really hard. I hope that the treatments start to be effective for you. And good luck with the autoimmune diet. I think this can for some make a very big difference. Im trying to cut down inflamatory foods, but these seem to cover most of the foods I enjoy, including dairy, bread and tomatoes. No cheese on toast with tomatoe sauce!. Also Im not sure what you do to substitute dairy when soya is also inflamatory. Also atm its hard not to comfort eat and Im not comfort eating ginger and fish oil.
This is precisely why I took the opportunity to raise some awareness about the reality of having Sjögren's ("Show-Grins"😁) here Charlie.
Like any autoimmune disease, including Scleroderma, it can be mild and only affect the mouth and eyes for some. But for many others such as me it can be a full blown multisystem autoimmune disease. Then for yet others it affects their liver, kidneys or lungs or lymph nodes. In my case it has caused small vessel disease of the brain.
The only reason it is less acknowledged by non specialists is because it was only discovered in the 1930s so it has a lot of catching up to do on sister diseases RA, Lupus and Scleroderma. Also it's a common secondary to these diseases and because there are no treatments it gets relegated by sufferers of other CTDs and old style rheumatologists to serious nuisance status - although for some it's by far the more serious disease even as a secondary.
I'm really struggling with the AIP diet - I miss the foods you mention SO much -but I badly need to lose weight and find some mojo so I'll try anything just now - I've recently had 3 ENT infections in succession and antibiotics each time. I'm a fighter so this seems the most obvious way to fight autoimmunity where other pharma options aren't working. Grim but grown up! 🙄😏 X
Hope you doing OK today. Thanks for the info. I think I have a much clearer picture of sjorgrens now. Is pity that the websites dont make some of this a bit clearer. And is good I think to take up the cudgels in a cause that you feel strongly about. Once I know what the heck illness I have I think I will try and get involved in campaigning around it. My first job was as a transport campaigner for Friends of teh earth UK, so Ive done a bit of campaigning. But I suspect that my campaign "skills" will now be a few decades out of date. Not to mention the sea level having risen a good bit since I was at FoE and going on about climate change!
OK Im waffling now. Had blood take today for second ANA test. The first one was ELISA (they give them such sweet namea) and consultant asked for AFA ANA and the APS tests. The nurse had one heck of a job getting blood, which in itself made me a bit suspicious of APS. My second wife was a nurse and use to say that I had great veins for taking blood, as so prominent and large. Made me chuckle to think that my veins were prominant, like they did a lot of work in the community or soemthing.
You've made me chuckle now Charlie re prominent veins. I can almost see a painting coming on (I'm an artist by profession!). My veins have always been tricky and my blood is thick (high red blood cell count etc ) but apparently this is common with Sjögren's too - something to do with high antibodies making it thicker or something! The secret of getting bloods drawn is to drink tons of water a few hours before. Unless your bladder is shot like mine - in which case an hour will probably do.
I do get mad about the place Sjögren's seems to occupy amongst the rheumatic diseases - my GPs always seem to call my problems connective tissue related and I suspect they are baffled that so many serious and diverse symptoms come under the heading of Sjögren's. But also. I suspect they can't quite bring themselves to pronounce it!
I have an old friend who worked for Friends of the Earth until about 26 years ago but I'd better not name names. I also recall Jonathan Porret coming to speak to us at art school and asking us not to buy toothpaste in the plastic upright dispensers because of high wastage.I squeeze every last drop out of two of my most essential pharma products now so it must have sunk in pretty well!
Ach well I'm off with husband to buy a toilet seat from B&Q now - about exciting as things get! X
Thanks for the water tip. Makes sense. Strange thing is that the nurse looked a little bit like she might have scleroderma. Maybe Im just seeing it everywhere atm.
You cant not tell me at least the first name of that friend?!! Porritt was a great speaker i think; probably still is. Im afraid Im not so hot on being green atm. Though I guess, not getting out much, my carbon footprint is not so great. There again, i still have the heating on in May.
Hope toilet seat purchase wnet well. A faulty loo seat can be pretty dangerous, as i know from personal experience.
Ha well Dave was name and no toilet seat as couldn't find the right size!
I think you will find everything much easier to cope with and manage once you know the cause. It's so hard being sick with no real explanation yet. No wonder you keep googling and worryingCharlie. I really do hope you get to the bottom of things soon. I found the neuropathy with no explanation one of the hardest things to bare. Before that the RA symptoms were hard too but I was quickly diagnosed and treated at least. Some just want treatments and never mind the cause, others need explanations followed by treatments. Guessingyou're in the latter category like me. Hang in there! X
I once stayed with a friend who had a dolphin loo seat. It was kind of transparent plastic with little dolphins "swimming" around inside. Im not sure that aesthetically it worked! And Im a big fan of dolphins (in their proper place).
The guy's surname didnt sound like a letter pronounced on its own did it? Not that you need to answer. I can only think of one Dave at FoE but my memory is a bit shot now. I keep doing online memory tests to try and reassure myself but its having the opposite effect. My memory use to be pretty good i think. I use to memorise 30 minute conferance talks word for word. Now I struggle to remember my own middle name (slight exageration).
I think an explanation for the symptoms would be good. Just so that I know the worse and dont fear even worse and so that I know that treatments are appropriate. One fear, that someone on another website accidently stoked, is that I have quite a few conditions. In fact, the symptoms do not seem explicable in realtion to anyone one condition.
I hope things have got easier for you now you know whats going on. Though it will be one heck of a battle whatever you know.
Ha ha no dolphins I can assure you- just plain oak and fingers crossed it fits!
Today I read a conversation between three people with Sjögren's- 2 of whom had been originallydiagnosed and treated for MS. Both are now in wheelchairs and struggling daily - which makes me feel very fortunate althoughI'm feeling lousy today - not sure how - just general nausea and fatigue and shooting pains. Son and his girlfriend coming for tea to see our new home so I must somehow pull through the treacle!
I guess you are probablythinking of Mixed Connective Tissue Disease (MCTD) or undifferentiated (UCTD)? The thing is every one of us has a different presentation - there are degrees of severity for every disease and once you are diagnosed and start treatment yours could quite possibly remit.
So envisaging the worst case scenario is not always constructive. I can say this now, looking back on the past 7 years and thinking how much time I've wasted by being health focussed at the expense of lots of other important things I should have kept my mind on. That said it's great to be well informed, but all too easy, I've found, to pick a disease you dread most and get the symptoms to fit.
MCTD and UCTD are often both managed very effectively with the same meds as all the others. Some will have these severely where others will be okay just managing them by themselves.
On the other hand, once you know what yours is, you will always have more compassion for anyone dealing with a chronic illness. And in your case, I sense you will use this newfound knowledge to do something constructive one way or another. Once campaigning and awareness raising, helping others by turning your lemons into lemonade etc gets into your psyche it's very hard to let it go!
My Dave was on the design, arts and fundraising side of things back in the late 80s. That's all I'll say but he's lovely and has his own design agency now with his wife.
My brain is a bit shot too and the Sjögren's small vessel disease is a scary thought but both my folks dropped dead suddenly at 73 so I'm a seize the day kind of gal just now. On bad days I wade about in treacle and on the odd good day I go full pelt. None of this pacing nonsense for me hee hee! X
Fitting a loo seat is one of the hardest things I have had to do in my life. And I think I failed. Maybe it was the wrong size. Maybe I should have followed the instructions more carefully. Maybe I just lacked what it takes to fit a loo seat correctly. When my mum sat on it when she came to vist there was a yelp from the bathroom and a kind of gentle chrashing sound. Luckily she was sprightly enough to not be injured (dignity aside).
Sorry your were feeling lousy yesterday and hope feeling a bit better today. I know what you mean about the treacle I think. Its like someone has poured treacle into my world and its affected no one else around me. They hop and skip, glasses of wine in hand, or gardening instruments, or doing whatver makes them happy and doing it full of energy and enthusiasm. And I kind of stare at them and think that was me once. Thinking and doing feel like such an enormous struggle now. I use to love writing and the words seemd to pour onto the page as fast as i could type, and I read them back and chuckled at the little jokes and asides. Now the treacle means that writing anyting seems like hard work and it is neevr quite what I want to write.
You are 100% right I think about fearing teh worst, and being too health/ illness focussed. Im goimg to try to get on with life but feel atm that Im surveying teh ruins and have no idea how to begin rebuilding or whether there is much that is salvagable. its like maybe at best I can take the stones from the ruins of the main house and build a small stone shed to sit in and nurse my self-pity.
Your attitude sounds great. And its really helped to read your replies. As to your brain being abit shot, I'd have to say that, from what Ive read in this forum, it is functioning at full throttle. Anyways, take care. Best wishes
I know only to well how you feel. I have diffuse systemic sclerosis and it's not an easy disease to live with. You get good days and bad days and as someone else said this disease is literally different in everyone. I've been lucky to meet someone with the disease and it was so fascinating how different it had manifested itself in each of us. But like all of us you have come to the right place to just talk to like minded people like yourself. We all have good days and bad days but together we are a great support to one another. Goodluck and remember we are all in it together!
Thanks for your reply and kind words. Hope you doing OK atm. Yes, I think meeting someone with same illness would be a great help and I plan to do that if at all possible. though atm Im not even sure what illness(es) I have but suspect that it/they will be rare and might be hard to find people in similar boat in rural Wales. Certainly forums have provided a great sense of not being alone and it has been inspiring to see how others have coped.
I just read your back story. Sounds like you have had an awful lot to deal with in the last 12 months. I really hope that you get treatment that is effective. Have you made any decisions about stem cell therapy yet?
The other thing I should mention is that I have been reading about the use of plasmapheresis in Systemic scelorderma and the case studies suggest that it can make a big difference. I think it should be available on the NHS. There is a guy on the Inspire website who has it for CREST and thinks that it has kept it in remiission for decades. I can post his details if you think might be useful.
If it turns out that I have scleroderma and/ or APS I think I will be asking about this treatment. Though I suspect that there might be a fight to get it, as its not cheap. There again it seems to be pretty safe from what Ive read. They clean and declump your own plasma and put it back in adn it takes about 2 hours and is done about 4 times a year. There again, I dont think there have been clinical trials yet, so isnt 100% clear who it will work for. Tbh Im nervous about medication side effects and want to try and avoid or minimse if posible.
Well things have moved on a lot since that short time ago. The Stem Cell transplant is still on the table but Dr Ong thinks the chemo has actually worked so I'm now going to have 6 more cycles over 6 months this time. I've spent the last week at The Royal Free having iloprost treatments through my new Portacath as my skin is too thick now for cannulas and mid lines. I also got partial results back for my Cardiac MRI and the disease is now in my heart as there is scarring and inflammation present. But the chemo should help that as well. Professor Denton has offered a study which could be of benefit to both the hospital and myself so still considering things. It's amazing how after just a year in after diagnosis how quickly things have developed but I remain positive always. My new mantra is " If you don't smile, you will only cry". But don't give up hope of finding people in Wales with some form of the disease. As I'm sure there are actually quite a few on this site from there. But whatever happens going forward one thing I would definitely say is there are always options and get a good support network around you. You will need them always. X
Glad the chemo seems to be working. But i know it must be really draining. Everyone fighting this illness deserves a medal imo. Sounds like you are in very good hands at the Royal Free. I think ppl go there from US and worldwide. My local hospital would probably just prescribe anti-depresants to ppl with sclero.
Really sorry to hear that it seems to have hit your heart. Im not sure which study you are refering to but there does seem to be some incredibly exciting break through scleroderma studies atm. I cant remember what its called but I think that researchers have identified an agnet that reverses firbrosis in in sclero and other conditions and that there will be clinical trails soon. Also I think resunab (spelling?) will be going into stage three trials soon, including in the UK? Gives me hope to know that, if I have sclero and/ or APS, at least there is so much more available than even 5 years ago.
Anyways, I reallu hope that they can slow down/ stop progresion for you. You are right about the smiling and crying. Though I think crying is good as well soemtimes, not that its soemthing I really know how to do. But plan to give it a go.
Look aftre yourself mate, and let me know how the treatments go please. Im rooting for you. cheers
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