Mixed connective tissue disorder, a look at my journey so far

[Dousey85]

This is my hand at the moment, as you can see I have lost the tips of my pinky and my index on my dominant hand, I currently have an ulcer on my middle finger and a new ulcer forming on my ring finger. My drs discharged me seeing that my middle and ring fingers were starting to form ulcers and I am just basically left at home in excruciating pain living on morphine, whilst waiting for an appointment with a plastic surgeon to discuss the sympathectomy surgery to try and improve my blood flow, if it fails I could lose my full hand, but I have to risk the surgery in hopes of it succeeding

[Barnclown]

Hello Dousey: am very sorry you’re having this terrible ordeal! Seems to me you are being very brave about this

Looking at your photo, i’m wondering:

Have your consultants mentioned whether they suspect systemic sclerosis is part of you MCTD mix?

I think you are diagnosed with Raynauds?

Have you joined the HealthUnlocked Scleroderma & Raynauds UK (SRUK) forum. cause i’d be very interested in the response you’d get if you post this there!

healthunlocked.com/sruk/posts

Take care & please keep us posted 🍀❤️🍀❤️ Coco

[Dousey85 in reply to Barnclown]

Ill take a look at that forum thank you, my consultants haven’t really said anything to be honest, it’s taken them two fingers and a year of no answers to finally refer me for surgery and give me a tablet that reverses and prevents the ulcers, and as for brave, I think I’ve been the furthest from brave as I could be, constantly crying because of the pain, and the amount of times I’ve just wanted to give up

[Barnclown in reply to Dousey85]

We’re all with you dousey: you’d be very very unusual if deep dismay, including crying a lot, wasn’t happening as you make your way through this awful passage towards better understanding of your version of immune dysfunction & connective tissue disorder...dare i say that everyone here who reads your post will be remembering all the times they’ve wept and wept , while in terrible pain and feeling ultra low...well, just being here and sharing all this including the pic of your poor hand is like a badge of bravery: heros cry too! Hang on in there! Ths can & will get better...you & your medics will figure this out and everyone at LUK will help.

🍀❤️🍀❤️🍀

[honeybug]

Oooooo Dousey you poor thing.

I feel so badly for your suffering if I had a healing wand 🥢I would heal you in a heartbeat.

My lovely friend Barnclown is very knowledgeable and so wise you can rely on her experiences to guide you in the right direction.

I just prayed for you. I hope you get treatment a solution to your problems ASAP.

Please take care. Sending you prayers healing hugs love and kisses.

EJ 😊🌸🌿🦋🙏🤗💗😘😇

[Dousey85 in reply to honeybug]

Thank you for your prayer, I’ve only been a member for two days and already feel very supported by you all already xx

[honeybug in reply to Dousey85]

I’ve been flaring myself and not on as much lately.

W E L C O M E D O U S E Y 85

🌸🌿🌸🌿🌸🌿🌸🌿🌸

There are fantastic people on here who care and share. We all support each other’s needs and this community is watched over by very dedicated people that keep us all following the rules and safe.

🌎🕊🌎🕊🌎🕊🌎🕊🌎

Looking forward to seeing you on here often.

Main thing is to take care of yourself and we’ll all lend an ear and voice whenever needed.

🦋💗🦋💗🦋💗🦋💗🦋

Take care.dear Dousey.

😊🌸🤗🦋🙏🤗💗😘😇

[Hidden]

Oh my goodness that looks so painful you poor thing - definitely you are brave. I can’t believe your doctors discharged you with this awful problem to deal with daily.

I agree with Barnclown that this is something to ask about on the Scleroderma & Raynaud’s HealthUnlocked. I have Raynaud’s secondary to neuropathy - but it only causes minor chilblains in my fingertips and it’s very sore and increasingly numb but there’s nothing much to see. 🤗

[Melba1]

Oh you poor thing, that looks very painful 🙁 . Were you discharged from hospital? Has your rheumy seen it? I was in hospital next to a lady with something very similar and she was having iloprost infusions. Have they tried you on these? If not, I would ask why not as they can reduce further damage, improve blood flow and help with the pain.

I really don’t think you should be left at home to cope on morphine with pain like that and the risk of further damage. Can you ring your rheumy and insist on a very urgent appointment? I know A and E is no place for us usually but if the pain’s too bad and you want to force quicker action, it might be the best bet. No dr could see your fingers like that and not want to help reduce the pain and potential damage.

Good luck, you’re being very brave but really think you need to insist on more medical help.

Let us know how you get on

Xx

[Barnclown in reply to Melba1]

Melba is vvvv experienced & gives great advice, dousey! Hope it helps. Medics really do get pain meds wrong for hands, eg after my finger was amputated the nhs messed up the date of the appt to remove the stitches....and i wasn’t well enough informed to beware of this...by the time they called me in to removed the stitches they had been grown over...the flippin nurse gave no NO PAIN MEDS at all before during or after what amounted to 30 min of torture removing them...this was in the 1998 when i was in my 40s...back then i was so cowed by the health system by then that i though this sort of “care” was normal...Years later i NOW know the pain sensors in our hands are notoriously sensitive and the way i was treated amounted to abuse...i hope you’ll follow up on melba’s advice 🍀❤️🍀❤️

[honeybug in reply to Barnclown]

Xxx

[Dousey85 in reply to Barnclown]

On both my amputations I was sent home two days later with no aftercare info and told tonarrange my own appointment with gp to remove stitches, first time was ok 2nd time they took them out too early and it got infected and I am still having problems with it and it was removed on 30/10/18 so a month down the line and it’s still infected and scabby, I just keep been given antibiotics.

[Barnclown in reply to Dousey85]

I used to wonder & wonder about my lifetime predisposition to dreadful recurring persistence pattern multisystem...i always seemed to be on high dose long term antiobiotics, or IV antibiotics...septicaemia etc...this was also in the years before i was prescribed immunosuporessant meds. i’ve always had lymphopenia (below range lymphocytes in my blood..which is characteristic of SLE and is an infection risk).

finally we discovered that when my blood immunoglobulin levels got tested, they have been & they still remain consistently below normal reference range (which is called hypogammaglobulinaema)

these 2+typesvof blood deficiency have turned out to be THE main cause underlying my predisposition to infections...so, might be usedul to just check with your medics re what your blood lab levels are for:

Immunoglobulin G, A & M

Leukocytes aka White blood cells ,including lymphocytes & neutrophils especially

Hope you’ll let us inow how you get on at the appt on Monday 🍀❤️🍀❤️

[Dousey85 in reply to Barnclown]

I will most definitely keep you posted, the appointment is to discuss the pros and cons and hopefully arrange a date for surgery, I googled the surgery sympathectomy and the photos are quite disturbing, please feel free to google it it’s quite informative x

[Barnclown in reply to Dousey85]

Thanks...will go googling...If any of your white blood celld &/or immunoglobulins are low, then they should give you IV antibiotics during surgery & oral antibiotics afterwards ongoing...am guessing your medics are alert to all this...but in your situation, could be worth asking the questions..XOXO

[Dousey85 in reply to Barnclown]

In the 18 years I have had lupus I have never been told any results I couldn’t even tell you what any have ever said, I’ve been on oral antibiotics since about the 22/10/18 and I’m still on two types today, my mum is looking at finding me a new dr as mine have done nothing but let me down and keep making lots of mistakes.

They just keep admitting me for weeks on end and I don’t see the drs, the nurses on the ward are like family to me, I literally get admitted to a private room and get hooked up to iloprost, left to deal with it and rarely see a dr then get discharged in a worse state then when I went in, it’s got to the point now where I don’t tell my rheumy dr when something is wrong out of fear of been admitted and made more poorly then I was. The last time I was admitted I went in on 18/10/18 and came out on 6/11/18 and during that admittance I had a bad reaction to the iloprost as they didn’t stop a medication I was on that reacts badly to the drip and my mum stood there and watched them resuscitate me because it dropped my sats to low and my blood pressure dropped to a dangerous level, then I lost my index finger, became very depressed and wanted to take my life so my mum made them discharge me, I’m just hoping the odds of this surgery go in my favour because if it fails I’ll lose my full hand 😔 everything is just so negative at the minute

[Barnclown in reply to Dousey85]

Thanks Dousey: i’m hoping the same for you...am right by your side

if a patient wants to understand more about the characteristics of their version of immune dysfunction & connective tissue disorder that patient has every right to be given details of their investigation results, diagnoses etc. Some people don’t want to know. Seems to me It’s totally a patient’s right: one way or the other. But, some doctors are more willing to give patients info about their cases than other doctors.

I’m mostly the type of patient who copes better when i know these details...although i am all too aware that everyone, doctors included, struggles to TOTALLY understand immune dysfunction & connective tissue disorders...whatever we all try at least to do our best & “cope”... but, frankly, sometimes illness can be so hard on us that we don’t have the energy to cope with “knowing” much, so we may just leave the “knowing” to the health system...that’s when we rely on our medics to decide which details we really must be aware of, and give them to us

The important thing, i feel, is that you know as much as you want to know about your case..and especially about the current critical condition of your poor hand. And your doctors really should respect you enough to share your details according to your wishes & their professional guidelines

Eg I’ve survived 65+ years of infant onset incurable illness,..+ long term misdiagnosed malignancy in my dominant hand (and come close to loosing it).. + all sorts of really awful stuff...+ i’ve had to put up with needing to be on daily oral antibiotics continuously for years with no end in sight... and i’ve coped better with this than i might cause when i made my “need to know details” clear to my GP & consultants, they’ve mostly been cooperative about “sharing”...and also cause this forum has been great about helping me make sense of my details

So when/If you decide you do want to know more but the health system doesn’t seem to want to cooperate about sharing, do let us know, cause Lupus UK and this forum can help 🍀❤️

[Dousey85 in reply to Barnclown]

I’m seeing my rheumy on 14/12 so I’ll ask them, thank you for this and I’ll deffo be keeping you all informed so that we can all help each other xx

[Barnclown in reply to Dousey85]

👍👍👍👍🤞🤞🤞🤞🤞🤞🌈🍀❤️

[Dousey85 in reply to Melba1]

I have done a year on iloprost and it didn’t work for me at all, my rheumy has now given up on that, I’m now on a pill called bosentan which is supposed to prevent the ulcers, but so far no success, I’m seeing my plastic surgeon on Monday to discuss my surgery

[MissusTee]

I have scleroderma, and that looks like scleroderma to me! I think that you need emergency iloprost, which is what I had when my finger looked like that!

[eekt]

XOX that is absolutely no way to be left to cope on your own...Melba1 is super-experienced and her advice is first-rate. We're all behind you, maybe with a tear in the eye, but strength comes in many forms xxx

Just copying in this from one of Gemma's (Dousey's) first post since a couple of replies here mention iloprost:

"My amputation journey started last June when my right ring finger turned blue, I was admitted to hospital and put on a drip called iloprost which is a vasal dilator, after 3 days of 16 hour infusions the dr informed me my dose was wrong, this caused my little finger to die and go black and had to be removed.

The rest of my hand continued to go blue a lot worse then it had been, over the last 18 months I have been on and off the drip with no improvements and despite me telling my drs it’s not working they keep putting me on it."

[honeybug in reply to eekt]

Ohhh eekt I’m so very sorry to hear this dear.

Gentle gentle hugs kisses love and prayers sweetie.

😊🌸🌿💗🙏

[eekt in reply to honeybug]

Hi honeybug, that's an extract from Dousey's first post on Monday since she'd already written about her experience of iloprost xxx

[honeybug in reply to eekt]

Oh thanks dear. Hope you’re doing okish.

Xxx

[eekt in reply to honeybug]

Sorry for the confusion honeybug 🤗 ...tried to save Dousey some typing about the iloprost since her dominant hand is affected. I'm on the up again, hope you are too 🌻...looking forward to the end of darkness 🌑 🌒 🌓 🌔

Let's hope Dousey has some proper medical care soon XOX

[honeybug in reply to eekt]

Yes sweetie prayers for poor Dousey. So nice of you to help her out with posting.

Thank you dear. You take care and bless you.

😊🌸🌿🦋🙏🤗💗😘

[LalSD]

I am very sorry to hear and see your troubles Dousey85. I can not offer much but send you my love and well wishes. Please keep positive. Lxxx

[Lupiknits]

I’m so sorry that you are going through all this, and it seems that you have had some extremely bad treatment. I agree with the suggestions others have made. All I can do is send a hug. We’re all on your side xx

[DMM01]

Hi Dousey, I really feel for you, your hand looks so sore! When I have had ulcers in the past I have been admitted and given a 5 day Iloprost infusion, have you ever had this treatment? As this keep happening I was booked in as an outpatients and had over 3 days letting me go home with the canular in, this seemed to prevent the ulcers as even a papercut could result a week in hospital! If it's something you haven't tried it could really help in the future. All the best

[Dousey85 in reply to DMM01]

I’ve had iloprost 4 times over the last 18 months and it hasn’t worked for me so my rheumy has stopped it now and put me in a tablet called bosentan, too early to see any changes as only been on it a month so hoping this works x