Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

wcc3.75 hb 11.43 plt 14


  • Please log in to reply
20 replies to this topic

#1 thisisme

thisisme

    Senior Bronze Member

  • Members
  • PipPipPip
  • 32 posts
  • Location:London uk

Posted 14 March 2010 - 11:41 AM

This might be a bit garbled....Here goes.
Last thusday, I phoned Royal free, because of bruising, they wanted me to go straight away, to see them. I told them, I had a rheumatology appointment, the next day.

I saw the rheumatologist, what I thought was telangiectasia, all over. he didn`t seem concernered, just said the desease was progressing. Again, I pointed out, the Royal Free suggested a full blood count, reluctantly, he wrote out a blood form.

I was phoned at home, at 7.30pm, to go straight to A&E, my platelets were 12, average is 150!

Was hospitalised, and given platelets and sent home the next day, platelets 101 and told to have further test, on the Monday.

Phoned on the Wednesday, for the result...platelets down to 58, so that means they must be lower still. Off to A&E again, yes, down to 14, hospital has no platelets, will have to send out for them. Am told that as soon as platelets are depleted, I will start heamoraging from any, or all orafices.

It was my nose! luckily, the platelets arrived and as soon as it was completed, the nose bleed stopped.

This was yeserday. Sent home today, to attend the day unit, on Tuesday, unless I deteriorate! I will get more platelets then. I must not blow my nose, and take care I don`t harm myself. don`t know if I have written too much, feel free to cut anything out.
I have left a message on Specialised nurse phone, at Royal Free.
Diagnosis ? ITP ? MDS
Take care.
Lynne

A trouble shared is halved, a joy shared is doubled

#2 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 15 March 2010 - 03:13 AM

Hello Lynne

It's so good to hear from you again but I am so sorry you have been and still are so unwell. Make sure you get straight down to A&E if you have any bleeding or you feel really poorly. When you go to the hospital for treatment tomorrow will they then set up a treatment plan to tackle the problem long term?

The specialist nurses at the Royal Free will ring you back and they can access your records there and also consult with one of the rheumatologists.

Please, please keep us informed of how things are going and take care. :flowers:
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#3 thisisme

thisisme

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 32 posts
  • Location:London uk

Posted 15 March 2010 - 03:53 AM

Thanks Amanda.

Yes Royal Free nurse has phoned back, am to give the fax number for Prof Denton/Dr Ong.

Prednisolone might have kicked in, as petechiae and purpura are not as many :-) and I knocked myself and was able to stop bleeding. :jump-for-joy:

I will be giving the local Dermatologist a piece of my mind, if I had listened to him, I might not be here! BUT I AM :emoticons-yes:
Take care.
Lynne

A trouble shared is halved, a joy shared is doubled

#4 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 15 March 2010 - 06:12 AM

Hello Lynne

By all means go back to the dermatologist and explain the error of their ways that next time they won't miss it!

Please let me know what Prof Denton/Dr Ong says and I'm glad you're feeling a bit better.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#5 agilitygirl

agilitygirl

    Bronze Member

  • Members
  • PipPip
  • 17 posts
  • Location:Rochester NY

Posted 16 March 2010 - 12:28 PM

What a scary experience. So glad you got treatment when you needed it. Keep us posted.
Sending you all good healing thoughts, Gale

#6 thisisme

thisisme

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 32 posts
  • Location:London uk

Posted 17 March 2010 - 12:11 AM

Thank you Gail, for your good wishes.

I was at the day hospital yesterday. The result of the bone marrow biopsy, will not be back, until next week.......The good news is, my platelets seem to be holdig they have only dropped by 2 to 54....normal is 150-300, the prednisolone is holding them. The 2 conditions they think it might be, are ITP (Idiopatic thrombocyytopenic purpura) or MDS (myelodysplastic syndrome). We are hoping it is ITP :-)
Lynne
Take care.
Lynne

A trouble shared is halved, a joy shared is doubled

#7 thisisme

thisisme

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 32 posts
  • Location:London uk

Posted 31 March 2010 - 06:43 AM

Back in hospital, with platelets down to 13 again, more transfusions 3. Was discharged on 27th, fortunately, the sister accompanied me to the taxi but I collapsed by the lift, she called for a wheelchair, saying how sorry she was but as I was discharged, there was nothing that could be done, so I got home and called an ambulance. When I was back at hospital, it was called a failed discharge, so was transferred back to the ward and could not be seen by A&E but had to wait for the night doctor, was seen at 2.30am, platelets down to 12.. Released today, with platelets at 39, so will be back in hospital, tomorrow, or Friday! They still have no idea what is causing it, I have asked them to test for Lupus, because that is a cause. Have spoken to the special nurse at Royal Free and an earlier appointment is being made.

Do you think Royal Free would send an ambulance for me, because I feel too fragile to go by public transport.

Lynne
Take care.
Lynne

A trouble shared is halved, a joy shared is doubled

#8 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 31 March 2010 - 09:06 AM

Hello Lynne

I am so sorry! I cannot believe letting you go home to call an ambulance to take you back to hospital was the right procedure. When you feel able please speak to the Royal Free's patient and liason service (PALS) about how the situation should have been handled. Their details are on the Royal Free website www.royalfree.nhs.uk under patient and liason services.

From the Royal Free website is says about transport:

Hospital transport
Some people are entitled to hospital transport. If you need hospital transport on medical grounds this is usually organised by your general practitioner. You are collected up to two hours before your appointment time, so please be ready in plenty of time. When you arrive at your clinic, tell the receptionist that you came by hospital transport so that we can arrange your return and future journeys. If you have any problems, call the hospital's transport office on 020 7472 6572.


Have a look at the website under "getting here" for more information. You can also speak to PALS about the transport issue if you would like.

Please let me know how you get on and take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#9 Vanessa

Vanessa

    Senior Bronze Member

  • Members
  • PipPipPip
  • 94 posts
  • Location:Teddington Middx UK

Posted 01 April 2010 - 12:09 PM

Hi Lynne

It seems like you are really in the wars.

I hope you manage to get sorted out as soon as possible.

Best wishes

Vanessa

#10 thisisme

thisisme

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 32 posts
  • Location:London uk

Posted 06 April 2010 - 07:00 AM

Thank you all :-)

Looks like things are starting to happen. Had further 2 bags of platelets yesterday and another 2 ordered for Friday.

I am to see a professor in platelets at St George`s hospital, Tooing. It seems it could be autoimmune related!

Am to see Professor Denton, on 15th, an ambulance will take me.

I will keep you updated, as and when.

Lynne
Take care.
Lynne

A trouble shared is halved, a joy shared is doubled

#11 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 06 April 2010 - 07:12 AM

Dear heart, Lynne! I hope they get this sorted out soon, you certainly don't want to go on this way. I'm glad you can get hospital transport, I can't imagine dealing with public transport feeling as poorly as you must do. I'd missed your earlier posts and am sorry I didn't send you my very best wishes earlier. I'll keep you in my thoughts and watch out for updates.

Warm but very gentle hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#12 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 06 April 2010 - 11:01 AM

Hello Lynne

I am so glad you're now getting somewhere! Absolutely right they should be sending an ambulance and you know you'll be seen by the best when you get to the Royal Free, I'm up there myself later this month.

Please keep us informed and take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#13 Vanessa

Vanessa

    Senior Bronze Member

  • Members
  • PipPipPip
  • 94 posts
  • Location:Teddington Middx UK

Posted 06 April 2010 - 08:16 PM

Hi Lynne

I am pleased to hear that things are starting to happen!

Good luck on the 15th.

Vanessa

#14 thisisme

thisisme

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 32 posts
  • Location:London uk

Posted 16 April 2010 - 01:01 AM

An update.

Have now developed a heart problem and have to take Glyceeryl trinate and undertake tests. To inject iodine, will be too invasive and could cause more bleeding, so have to be injected with something to make my heart work, as if I were on the treadmill, forgot to write down what the procedure is called :( Also have to undergo chest investigation. Fortunately Mr sclero has taken a back seat, apart from skin hardening, which makes finding soft skin, for the needle to go in, becomes increasingly difficult and soooo painful. Any ideas on making this more comfortable?

I still have not found out, what I should have done about the failed discharge, someone was to have called me back, when I feel stronger, I will go to PALS in person and get it sorted.

Will keep you updated, as and when.

Ispell not detected, can`t go to download page to install :excl: so hope spelling ok :unsure:

Lynne
Take care.
Lynne

A trouble shared is halved, a joy shared is doubled

#15 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 16 April 2010 - 07:16 AM

Hello Lynne

I am so glad that you are getting good care now but I am sorry you have new symptoms. Please do follow up with PALS (patient advice liason service) when you feel able because the way you were treated doesn't sound right to me, a non medical person.

Take care. :flowers:
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#16 scampie5

scampie5

    Silver Member

  • Members
  • PipPipPipPip
  • 158 posts

Posted 17 April 2010 - 09:39 AM

Hi Lynne,

I'm so sorry to hear about all your problems and hope that the doctors sort it out soon. You are really going through it but we are always here and thinking about you. I hope this helps you to know that you will always have some one to talk to.

Take care, love, Lynn

#17 Vanessa

Vanessa

    Senior Bronze Member

  • Members
  • PipPipPip
  • 94 posts
  • Location:Teddington Middx UK

Posted 20 April 2010 - 09:11 AM

Hi Lynne

Sorry things are still so difficult.
I have been having weekly blood tests and experiencing difficulties due to skin thickening (3 stabs yesterday) but then the nurse used a smaller needle which was much better.
Maybe worth aking about.

Best wishes

Vanessa

#18 Deb1million

Deb1million

    Silver Member

  • Members
  • PipPipPipPip
  • 108 posts
  • Location:Maldon, Essex, UK

Posted 21 April 2010 - 08:34 AM

hi Lynne
sorry to hear about your newly diagnosed problems, but glad you are now getting the best care. I hope the tests arent too stressfull. Please keep us updated as to how you are getting on? And I'll be thinking of you!


Hi Vanessa as well!
(sorry, Ive not logged on for ages)
I sympathise that youre having more skin issues. Sending you warm hugs.
I always have to have blood taken using the baby blue cannula, as they can never get any blood, or set up infusions etc. As you say, its worth asking

take care everyone
Debs

#19 lizzie

lizzie

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 497 posts
  • Location: UK

Posted 22 April 2010 - 12:57 AM

Hi Lynne, Hoep you get your problems sorted soon. Re problems with taking blood-although I do have skin thickening , the bigger problem for me is that my veins don't want to be found! We often have to resort to me sitting with my hands in warm water for 10 minutes, and they have also use glycerin trinitrate spray on my skin to make the blood vessels dilate.
Lizzie

#20 thisisme

thisisme

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 32 posts
  • Location:London uk

Posted 14 June 2010 - 02:17 AM

At last, things are about to happen!

Had platelets today, as they were down to 11!, normal 150-400. My platelets are now being matched, as I developed a reaction to unmatched, so I have to be prmedicated with steroids and peiton. I find it hard to keep awake, when I get this :-)

Tomorrow, I have a lung function test, on Thursday, see the Prof at Royal Free, more platelets on Friday as well as blood transfusion.

On Monday, start on cyclosporin will have to stay away from infection, as I have to be as well as can be expected. If all goes well, with cyclosporin, I will start ATG, in 3 months time.

Thank you all, for your good wishes.
Take care.
Lynne

A trouble shared is halved, a joy shared is doubled