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christopher

newbie

38 posts in this topic

Hi I thought it was about time I said hello as I have been hanging around for a few days reading and taking in the information.

 

I have been diagnosed with localized scleroderma. It all started after the worse flu I have ever had that was 15 weeks ago and a hard lump of skin formed along with a redness on the right side of my upper body. Went to see a consultant at the Dermatology department in Plymouth and he said I had localized scleroderma and after a number of blood tests they thought I had a liver diease as well but after a number of tests and scans it has cleared up, in fact it was the antibiotics my doctor put me on to start with that triggered the liver function tests.

 

Well went back to the consultant last week and he has put me on steroids (medrone), he has put me on a low dose to start with as he isn't sure something else isn't going on as well inside. I have had chronic fatigue from the very start and I'm in constant pain now in my upper body and if I'm out walking I'm out of breath quite easily. Is this normal with localized scleroderma?

 

Hopefully speak soon,

 

chris

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I thought I would add that I still need to find out what kind of Morphea it is that I have. Does anyone know what further tests/time taken to find out this sort of info? It all has seemed slow moving, and a roller coaster ride in one!

 

I have also read that most/if not all of you are under the care of a rhuematologist, I am still under a Dermatologist. Will this change?

 

Many thanks in advance of any readings/replies.

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Hello Chris

 

Welcome to the forums and your new disagnosis. We have a lot of information on site about localised scleroderma, also known as morphea.

 

About 25% of people with morphea also have a non skin symptom such as fatigue and about 4% can have two non skin symptoms like say fatigue and reflux. It doesn't mean you have or will develop the systemic form of the disease in fact only 2% or less of people with morphea develop the systemic form so there's a 98% chance you won't.

 

Take care and 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)

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Hello Chris

 

In answer to your second post have a read of Systemic Scleroderma Associated with Morphea.

 

It's my understanding that morphea is usually treated by dermatologists.

 

Take care and 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)

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Thanks for taking the time out to reply Amanda. I really appreciate it. I have found researching my problem very confusing. Thanks for those statistics, which help to put it into a little more perspective for me. It's so easy to let doom and gloom envelope you during the diagnoses.

 

On the plus side, I am taking the opportunity whilst on sick leave from a very physical job to improve my qualifications to get a physically less demanding job. Down, but certainly not out!

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Did I hear my name? Welcome to our Forums Chris. "Doom and Gloom" I am the Doom not sure whom might be the Gloom.

Many of us with Scleroderma do try to find a Rheumatologist that specializes in Scleroderma. So, if you get a chance to ask around before making an appointment with just any rheumatologist that would be a good idea. Many doctor's still don't know about all the treatments available to those of us with this intriguing illness. Keep researching and asking questions as often as possible to educate yourself and become more familiar with this disease.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi Chris,

 

Welcome to the Forum! We've got lots of members with Morphea, so hopefully a few of them will see your post and chime in. You can also look in the Personal Stories about Morphea in the main ISN site.

 

Good on you for using your sick leave so wisely! I'll keep my fingers crossed that when you go back to work you can move into the job you want.

 

I nearly asked "Which Plymouth?" and then the brain kicked in and said it had to be the original one since you posted in the UK forum. :lol:

 

Best wishes,


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

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Hi guys sorry not posted for a while!! Well be back to hospital for a few scans had a biopsy and MRI scan the biopsy showed up what my dermatologist consultant thought morphoea and the MRI scan showed nothing.I was sent for a MRI as they thought I have nerve damage to my upper body as I'm in constant pain and nothing seems to be improving with medication.

 

I'm finding it difficult to drive now because of the pain and last Monday I had to have a appointment with Occupational Health and took me until Sunday to get over the 70 mile round trip. Talking of the Occupational Health visit which went very well it's such a relief to be able to speak to someone who knows all about the illness and has been able to get this message over to my employers who are to have a meeting about me this week to discuss my future or lack of it and looks like they will medically retire me.

 

My dermatologist consultant is at a total loss what is causing my upper body pain so taken matters into my own hand and asked for a referral to see a rheumatologist and hope if they can't help they might be able to get me to see a specialist as it seems we are out on a limb down here in Devon.

 

Will keep you guys informed when I hear back from my employers.

 

Onwards and upwards,

 

chris

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Hello Chris

 

Should you get ill heath retirement I suspect you will find it a great relief, I certainly did. The pressure to have to try to work when you know you can't will be over. I'm amazed that your Occupational Health knew about scleroderma, what a relief that must have been.

 

Most definitely get a referral to a rheumatologist and you may want to take the opportunity to get a referral to a scleroderma expert. I always recommend the Royal Free because it's a centre of excellence for scleroderma and I'm a patient there myself.

 

Take care and 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)

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Hi Amanda,

 

You're not wrong; it was such a relief when he started talking about Scleroderma. It's really the first medical person I have spoken to that was able to have a proper talk about the conditions and living with the illness. He must have done his homework.

 

He also made it aware to me that finding a specialist down here wasn't going to happen so I was expecting it will take a trip to London

 

Thanks for your support this site is great for helping everyone out.

 

Chris

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Have been told by my employers, that they had a meeting about me today and im to be invited to have a chat with the owner to discuss what happens next

 

will keep you posted

 

chris

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Hi Chris

 

I got IHR from my job due to having Limited Scleroderma among other problems and I found that my general health did slowly improve a bit just because I didn't have the stress from the job or an unsympathetic employer. Stress can make things worse.

 

Hope the meeting goes well for you.

 

 

Best Wishes

 

Buttons

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Hi Buttons

 

Yes I hope they give me IHR but aint holding out too many hopes as they have fought my illness all the way

 

Will keep you updated once I have had the meeting

 

Cheers

Chris

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Hello Chris

 

I didn't realise that you think your employer may resist retiring you on ill health grounds. That being the case you might want to consider getting prepared for the meeting, consider taking someone in with you whether a union representative or welfare officer. Have you had your copy of the report from Occupational Health? If not make sure you have it prior to the meeting so you know what your employer has been told.

 

I assume that your employer has some sort of fit for work policy, as mine did, and that the point of the policy is to determine whether a person can continue to work with any reasonable help (scleroderma is likely to be covered by the disability discrimination act) and if not...well to let them go because they have and will continue to have too much sick leave.

 

When I applied for ill health retirement it took 8 months for me to get a decision and it was a very, very long wait. If it had been no I would have been devastated having worked for the same employer for 20 years. As it was I was able to brag about being a pensioner at the age of 40 and I do hope you are able to join our exclusive club.

 

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)

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Hi Amanda,

 

Yes I have seen the occupational report in it he stated that he can't give a return to work date and he classes me now as disabled and there is no way I can go back and do the job I was doing plus he also stated that I was now covered under the Disability discrimination act so from that they understand how serious the situation is. I spoke to my manager on Friday and he told me that after being off since early April they can't keep the job open any longer and that he and the 2 bosses above were to have a meeting on that day.

 

After the meeting he rang me to say I will be invited down for a chat with the owner of the business as it has to be done by the book but as the company has been lets say less than supportive of my condition I expect them to probably get rid of me just hoping I will get the Ill Health Retirement as the stress of this ain't helping my condition and find myself in constant pain and finding it hard just coping.

 

Cheers,

 

Chris

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That's kind of you Chris but I'm not really an expert on them. I wanted to make sure you know what your employer knows so you don't get any surprises in the meeting. Should your employer decide to terminate your employment you could take them to an industrial tribunal to have their decision scrutinised. I hope it doesn't come to that for you.

 

Please keep us updated 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)

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Hi Amanda,

 

My boss emailed me the occupational report so there's nothing they can surprise me with. He has made it very clear on the report I can't go back in my current state and can give no idea when or if it will improve as my employers have not bothered researching anything to do with my illness so perhaps now they will.

 

I just want it over and done with now and in my heart I know I can't return to work.

 

Chris

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Hi Chris,

 

I'm sending good wishes your way, and hoping that your disability application moves along smoothly. It's a huge stress to handle on top of illness, so I hope you are keeping an eye on relaxing and refreshing as much as you can during this time.

 

Here are some warm hugs, just for you. :emoticon-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Shelley,

 

Thanks for the hugs :thank-you: really need them at the moment. Hope to have it sorted soon as my statutory sick pay runs out on the 8th December and will have to go onto incapacity benefit which ain't helping my stress levels :crying: .

 

chris

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Hi Chris,

 

Does 'incapacity benefit' mean 'lots less income'?

 

It amazes me that we don't have more topics on the board such as "How to recycle shoe leather for food," or "Dog food is man's best friend!" because of the awful effect of illness on income.

 

In the U.S., there is no automatic or gentle transition from work to disability, usually it is very harsh with several years waiting to be approved and with medical coverage only kicking in several years after approval, as well. So it might be even more of a hardship here, but I can't imagine a scenario where anyone would be better off sick and on disability pay, than healthy and on full salary.

 

More hugs for you! :emoticon-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Shelley you are hilarious but what a shame that what you say is very true.

 

Chris you'll actually be applying for employment and support allowance which replaced incapacity benefit and income support for any claimants after October 2008.

 

This relatively new benefit requires you have a medical assessment but the good news is:

 

*Under Employment and Support Allowance, if you have an illness or disability that severely affects your ability to work, you will get increased financial support and will not be expected to prepare for a return to work. You can volunteer to do so at any point if you want to.

 

I'm guessing that you'll be considered to have an illness that severely effects your ability to work!

 

I know from experience that the transition from income to benefit is a difficult one but you must persevere.

 

Take care.

 

*www.direct.gov.uk


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)

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Hi Chris

 

Thankfully I haven't been in the position that you're in at present as I haven't been in paid employment for many years, but I've been reading your thread avidly and I do hope your claim for retirement on ill health grounds is successful.

 

I shall be thinking of you and hoping that your meeting goes well. :)


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)

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Hi Joelf,

Thank you for your kind words must admit it is very stressful at the moment waiting on my employers. :temper-tantrum:

 

Hopefully they will sort it soon as they have given me a deadline of the 8th December that they will stop paying me SSP and they won't keep my job open any longer.

 

When they had their meeting about me last Friday I was promised they would write to me to bring me up to date on the situation still waiting for this letter to turn up!!

 

Thanks again guys for your thoughts and hugs really means a lot.:thank-you:

 

Chris

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