Jump to content


Did you know that exercise increases inflammation in systemic sclerosis?


Photo

Royal Free Hospital


  • Please log in to reply
16 replies to this topic

#1 Bobby Dazzler

Bobby Dazzler

    Bronze Member

  • Members
  • PipPip
  • 16 posts
  • Location:Livingston Scotland

Posted 25 August 2009 - 07:43 AM

Hi Everyone,

this is my first post on the forum and although I have started this post on numerous occasions I intend to complete this one even though I may get upset (but at least nobody will see me !!)

First of all let me introduce myself , my name is Bobby, I am a 48 year old male and live near Edinburgh.
I was diagnosed with Systemic Sclerosis/scleroderma in March and was in Hospital on 2 occasions to get iloprost infusions, CT scans, lung function tests, X-rays,heart scans, and endoscopy.
I also had an enlarged lymph node removed and an exploratory operation as I had bleeding from my rear end.

The results of the tests confirmed scleroderma and also showed that I have a problem with my lungs and I have to have further tests by a specialist.I also have a problem with my stomach and have a lot of discomfort with heartburn due to scarring of the digestive system and hernia. Although I previously had a bit of a beer belly I can only describe it now as looking like half a space hopper under my ribs with skin so shiny and tight that it looks like it is going to burst. again I am waiting to see a specialist about this.

I am currently having trouble with my Joints and my mobility and breathing are really poor at the moment and are getting worse everyday.I also suffer from a feeling of electric shocks throughout my body that cannot be explained by the medical staff but it keeps me awake at night.
I recently went through a period of Why Me? and yes I find it hard to cope but hey I am not a robot I do have emotions.But then I think that although I am ill there is always someone worse off than me.

I am sorry for the length of the post but I will now come to the questions.

The hospital in Edinburgh have referred me to the Royal Free Hospital in London can anyone tell me

What to expect
How often will be expected to go
Do I have to pay for travel costs myself or does the Edinburgh hospital cover this
Is it easy to get to from Kings Cross or is it easier to get there from London airports

I thank you all in advance of any answers that you can provide and wish everyone all the best in the fight that we all may have

#2 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 25 August 2009 - 11:24 AM

Bobby,
Welcome to the ISN forums! I'm sorry to read about everything you are dealing with right now and the anxiety of not being able to get in to a specialist right away. Unfortunately, I can't answer your questions because I don't live any where near the UK. I'm on the other side of the Atlantic.

Your emotions are normal! We have all been there and we all revisit "that place" from time to time. If you haven't seen it already, we do have a section on coping with scleroderma and emotional adjustment. Many of the ideas have helped me tremendously. I hope you find something that helps you. Just joining the forums is a great start. You are now talking to people that understand what you are going through and are willing to offer as much support as possible.

I hope you get the answers you are seeking.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 25 August 2009 - 12:32 PM

Hello Bobby

Welcome to the forum and I am glad you actually completed your post.

As Janey has already said the range of emotions you are feeling are quite normal, remember you have moved from the realm of the healthy into the realm of the no so healthy! The emotional ups and downs will come and go as you adjust to being a person with scleroderma and I have no doubt you will adjust because sclerodermians (that's me & you) do. At some point we come out fighting refusing to totally submit to our disease but getting there is a process. Right now you need to allow yourself room to grieve, be angry, be sad and accept that this is okay because it is. Most of us on this forum can relate to the process you are going through so please be encouraged.

I am a patient at the Royal Free which is a centre of excellence for scleroderma and houses some of this country's scleroderma experts which is why you would have been referred there. The Royal Free also has a team of specialist nurses that you will no doubt be introduced to when you visit and thereafter they are at the end of the telephone to help you.

How frequent the appointments are varies from person to person, myself I go every 6 months and I am into my second year with scleroderma. I travel by car to the hospital so can't help with public transport other that to direct you to the Royal Free website at www.royalfree.org.uk which gives details about this.

As for travelling expenses the referring hospital may have an assistance fund to help cover your travelling costs if you are unable to cover them yourself.

I hope this helps and please keep posting.
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)

#4 Peggy

Peggy

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 635 posts
  • Location:Minnesota

Posted 25 August 2009 - 12:42 PM

Welcome to the forum. With regard to the electric shocks you describe................if it's what you're referring to I think I know what you're talking about. My sclero started with my hands and feet going tingling; then it progressed to numbness; and then it progressed to where I had these stabbing shots of pain in random parts of my arms and legs. It would feel like I was being stabbed from the inside / out and it would hit me in random parts of my body at random times but would be painful. If this is what you're talking about when you said you have electric shocks then this is the same as me. I now have progressed to where this is now constant pain in my arms and legs and not just the joints but the entire muscles. I have muscle damage up to my knees and the neurologist that is doctoring this part of my disease has no idea if it will continue to progress. I've tried IVIG where they give you the good blood platlets from people and that did bring my CPK muscle numbers back to normal but it didn't do anything to aid in the pain. I wear a pain patch that administers pain meds 24/7 and I change this every 3 days. I also take oral pain meds as needed. I also take Cellcept that has helped in softening some of my skin. Now the doctor is trying Methotrexate to see if this will help with the pain. If that doesn't work then I'm at the end of what they can do for me. I have some lung involvement; a nodule on my lung that they're watching; terribe reflux/gerd/esophagus issues; cystitis of the kidneys; polymyositis; raynauds; sjogren's; and a protein marker that they are watching that indicates that at some time I will develop lymphoma.

At the beginning of my diagnosis it was really hard to get used to my new life. I used to be so active and the energizer bunny and on the go all of the time. Now my days are filled with pain and a great deal of fatigue. It's been turned upside/down and I'm no longer able to work and do the things I used to do. But with time you just get used to it and it is what it is. I am determined to fight with all that I have and try whatever they give me to combat what this disease does to me.

My biggest advice to you is to make sure you are dealing with doctors who know about Scleroderma. If they don't then you're wasting your time and also could possibly be harmful to you as they miss something that needs to be addressed. You also have to be your own advocate and if something isn't being done fight for it to be done; if you have questions make sure to ask; if you don't like what's being done then change it. You have to fight for yourself as no one else will. It took me a year of going from doctor to doctor to find out what was wrong with me. Alot of them along the way didn't take me seriously and looked at me like it was all in my head. It was only because of my own determination in knowing that something was wrong that I trudged on and thank heavens got in front of a neurologist who saved my life by taking me seriously and really wanting to find out what was going on and not settling for a blanket answer that really didn't address what was going on.

Good luck to you and keep us posted on how it's going.

Warm hugs,
Peggy

#5 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 26 August 2009 - 06:23 AM

Hello Bobby.

I'm so sorry that you have been feeling very low; it is really horrible to realise that you are no longer as fit & healthy as you used to be........I think perhaps acceptance plays a large part in coming to terms with a chronic illness. I have suspected Scleroderma/Polymyositis with lung involvement & in fact have listed all the gruesome details of my condition on the thread 'Treatment for Interstitial Lung Disease'. I also had excruciating joints & swollen fingers which have been subdued with a low dose of steroids but I don't think I shall remain on them ad infinitum; after 6 months I think my medication will be reviewed. Most people who meet me cannot believe I have a horrible disease as I look slim, toned & fit (I spend most of my life at the gym so I jolly well ought to!!! ;) ) so I'm afraid I don't get much sympathy as the average person has never heard of Scleroderma & doesn't realise how serious & debilitating it is!! :angry:

I too am going to be a patient of The Royal Free Hospital very soon of which I am extremely glad as they seem to be specialists in dealing with Scleroderma & I agree with Peggy that you do need someone who totally understands this bizarre disease. As far as what to expect goes, I think every case is treated differently & the same goes as to the frequency of your visits. I'm not sure about going from King's Cross Station; you could perhaps fly down to Gatwick Airport & then get the train to Clapham Junction & then get the overground to Hampstead Heath station. I have been refered by The Royal Brompton Hospital but think it highly unlikely they would pay my travel costs; possibly if you were claiming something like invalidity benefit you might be able to claim?? ; I have to admit I don't really know about that but I'm sure there must be someone at the hospital that could advise you.

I wish you the very best of luck & do hope this post is a little bit of a help to you.

Kind regards x

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#6 Bobby Dazzler

Bobby Dazzler

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 16 posts
  • Location:Livingston Scotland

Posted 26 August 2009 - 06:31 AM

Hi Janey, Amanda and Peggy,

Thank you for replying to my post and for the encouragement and help that you have given me

I think one of the hardest parts of this illness is that I spend all my time explaining and educating others about Scleroderma so it is great to communicate on this site and be able to relate with others and not to have to explain.

At a recent hospital appointment a nurse was writing down my details and asked me where I had been on holiday ( I also have hyper pigmentation all over my body and I look very tanned and dark skinned ) she also commented on how smooth and young looking my skin was around my face and asked if I had had botox!! I explained that I had not been in the sun never mind been on holiday and that my skin was tight around my face because of my condition. Now wait for this..... her reply was " your so lucky to have a tanned body and such smooth skin without having to spend any money obtaining it " I will leave it to your imagination on my reply to her comment.
I then proceeded to explain and educate to her about scleroderma as she had never heard of it before even though she worked in the department that was treating me.
Thankfully the consultant had heard of my condition and then asked " have you been somewhere nice !!! " Unbelievable !!,
I constantly get asked the same question as I do look tanned and my skin is smooth but sometimes get fed up repeating the same story and wish I could hand out a pre printed explanation of my illness as at times I get fed up listening to my own voice.
I feel like getting a tattoo on my forehead saying " This is not a tan "


I am so glad that I have found the courage to start communicating with you all and now I have started hopefully you dont get fed up of my posts and think "oh no its that mad scotsman again !!!"

I feel so much better now so I am thinking of changing my user name from "Crying Scotsman" to "Bobby Dazzler"
Is this possible to change the name, if so can you advise on procedure.

Bless you all and have a great day :)

#7 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 26 August 2009 - 06:38 AM

Hello Bobby

Passing out explanation leaflets....superb idea! I am very confident no one at the Royal Free will ask if you have been on holiday or think that tight skin is a benefit.

You can change your name by going into "my controls" below the purple toolbar. Once you change it all previous signatures change as well.

Be dazzling 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)

#8 Bobby Dazzler

Bobby Dazzler

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 16 posts
  • Location:Livingston Scotland

Posted 26 August 2009 - 08:04 AM

Hi Amanda,
I think I am having one of those senile moments ( please dont tell me thats also linked with Sclero !! only joking )
I have went into the my controls section, edit profile then got page that shows aol identity,yahoo identity etc. and dont know what to do next.

Hi Joelf, sorry I didn't say hi in previous post but your post was not there when I submitted mine, thank you for advice and if you have appt at the Royal Free in September who knows we might meet up.

I was thinking of flying down to London but although the train will take longer it would be better for me to leave and arrive in city centre as my mobility and breathing are bad and hanging about airports and arriving outwith city centres would be too much for me.

Re travel costs, I have no problem in covering costs myself. I am currently on sick pay at work although they are pushing me for ill health retirement. Things like travel costs, benefits are all new to me as I have never been unemployed before or claimed for anything
However people are always telling me to claim for this benefit, claim for that benefit and although I may be able to claim and maybe I should it just a constant reminder of my Illness and it just another thing to cope with

#9 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 26 August 2009 - 08:33 AM

Hello, Bobby

Just a quick note of welcome and a hug. I'll come back and read more later, but I wanted to let you know I have changed your display name (and login id, so it will be changed if you drop into chat as well).

I am also from Scotland.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#10 Bobby Dazzler

Bobby Dazzler

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 16 posts
  • Location:Livingston Scotland

Posted 26 August 2009 - 08:46 AM

Hi Jefa,

Thank you for that.
I think I must be having a major senile moment. I saw the post Royal Free Hospital started by Bobby Dazzler and thought someone has pinched my topic :angry: then I remembered that was me :lol:
I think I should go and take my medication and have an early night ;)

Lots of Hugs

#11 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 26 August 2009 - 11:03 AM

Hello Bobby

Lovin' the dazzlin'!

To see what benefits you may be entitled to have a look at the government website www.direct.gov.uk. To my knowledge you could apply for disability living allowance now but could not apply for incapacity benefit until any sick pay finishes but do check out the website.

I am in receipt of both having taken ill health retirement last year at the age of 40. Although there are financial implications of early retirement for me it was an absolute blessing, no worries about being off sick or future sick leave and still being able to bring in a salary albeit less than before.

Keep us posted 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)

#12 Deb1million

Deb1million

    Silver Member

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

Posted 26 August 2009 - 01:40 PM

Hello Bobby

I have noticed on the UK part of the forum, that there are a lot of members in Scotland, some may have made the same journey?
Today I have just flown back into Stansted airport from Glasgow (Prestwick). My daughter lives in Largs and I fly up once a month. You can get good online deals with some airlines from Edinburgh, too. I usually book a month in advance and often get deals for £5 each way all inclusive.
From Stansted, there is a train into central London, 45 mins, arriving into Liverpool Street station which is central for the tube for the Royal Free.
Im also having the stabbing pains all over my body, but not sure if its my sytemic scleroderma, or my long term type 1 diabetes. There is a range of medication that I hope your new specialists will be able to offer you and I really hope you get some relief. Personally, since I started on Cellcept and Plaquenil last December, my problems including heart, lung, fatigue and dexterity have all been noticeably improved.
..... and yes - I also get asked where I have been on holiday as I look so tanned. I also have a rosy complexion from Lupus and autoimmune hepatitis. My daughters want to buy me some 'stick-on wrinkles' as I look too well to be ill!!

keep on keeping on!
best wishes
Debbie

#13 scampie5

scampie5

    Silver Member

  • Members
  • PipPipPipPip
  • 158 posts

Posted 27 August 2009 - 09:04 AM

Hi Bobby so glad you found this site and finished your post I have a over lap of both so also have lung problems I have to say you couldn't be in better hands than the royal free I am not with them but my specalist is and I have seen one of the doctors from royal free please keep in touch and join us in the chat room on a wednesday night at about 7 Lynn

#14 Blue Girl

Blue Girl

    Newbie

  • Members
  • Pip
  • 5 posts
  • Location:Merseyside U.K.

Posted 27 August 2009 - 09:43 PM

Hi Bobby

I am under the excellent care of Dr. Marina Anderson, a Sclero Expert at Aintree Hospital Trust Liverpool. Marina works 'hand in hand' with Chris Denton and his team at the Royal Free. Liverpool may be easier for you to get to....besides you will have a 'lorra, lorra laughs in Liverpool (as Cilla woud say)!
Marina is based at the Clinical Sciences Research Centre. Either way you will be seeing someone who has an interest and specialism in Sclero.
Good luck Tricia.

#15 chockers

chockers

    Silver Member

  • Members
  • PipPipPipPip
  • 133 posts

Posted 27 August 2009 - 11:31 PM

Well by train go too Kings Cross ask for an all in ticket for the underground when you buy the ticket in Enidugurgh. Get the northen line to Belize Park there are 2 trains thinks its the Edgewhere Road one. When at Belize Park its signposted its about quarter mile up a slight hill. Turn right at Pond Street by a church. There is a youth hostel at Kings Cross.

christine

#16 Bobby Dazzler

Bobby Dazzler

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 16 posts
  • Location:Livingston Scotland

Posted 28 August 2009 - 01:00 AM

Hi Everyone,

Thank you all for the advice and support given to me. I am glad I plucked up the courage to start posting on the forum and will continue to do so.

Hi tricia thank you for info, I am going to Hampden Park in Glasgow next Saturday to watch Scotland playing football in a world cup qualifier,so I am sure I will get a lorra lorra laughs there :rolleyes: then come home in tears :angry:

Have a great day.

#17 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 28 August 2009 - 06:34 AM

Hi again Bobby

Just to say I have had my appointment at The Royal Free & can only echo the comments of the other posters on here; I had an excellent consultation with Prof.Denton & his team & they have confirmed that I am receiving the very best treatment for my particular problem with Scleroderma which was started by The Royal Brompton.

I feel confident that when you have your appointment you won't be disappointed!! ;) :)

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)