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Did you know that exercise increases inflammation in systemic sclerosis?


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Scared and emotional before diagnosis


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#1 Madusa

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Posted 26 March 2016 - 11:06 AM

Hi everyone,I have not been diagnosed by a scleroderma specialist yet and until I went for a routine check up in February had never heard of systemic sclerosis. Back in September I started suffering with aches and pains in my joints, overdoing it at work I thought so took pain killers and got on with life. Then in November I started with chest pains one afternoon and by evening had been rushed into hospital. After x rays and monitoring and blood thinning drugs, I was let home 3 days later.

 

I then had ct scans, stress echo cardiogram and more x rays and an appointment with a cardiologist in January, it was 2 days before this appointment that I had my first Raynaud's episode (my mum had it so I knew what it was). The cardiologist diagnosed me with vascular spasms with Raynaud's, put me on tablets and told me to see my Gp in a month.

 

When I went to the Gp in February for my blood pressure check he noticed I couldn't straighten my arms and mentioned scleroderma and refered me to a rheumatologist, of which I have an appointment in April, 10 days and counting.

 

I went back to my Gp a month later and he noticed other worrying symptoms so tried to get me seen earlier so off I went to the hospital the next day, waited 4 hours to be seen by a doctor (not a rheumatologist) he took one look at me and said Systemic sclerosis took bloods and said to wait for my appointment with the rheumatologist.

 

I am now in so much pain with either my joints, tendons or muscles, I can't tell which. I have swollen feet, ankles, knees,hands and fingers, trouble swallowing and walking. My elbow joins have got so bad I can't feed my self properly, bathe or undress without help.I feel as if my life has been suckered out of me.
Has anyone else had symptoms come on so rapidly and were you as scared as I am feeling right now.



#2 Shelley Ensz

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Posted 26 March 2016 - 11:25 AM

Hi Madusa,

 

Welcome to Sclero Forums. I'm sorry that you are concerned about possible scleroderma, and send my best wishes to you.

 

As it happens, it is possible, although quite rare, for scleroderma skin involvement to onset rapidly.  I know a few weeks seems like forever when you are sick and worried, but it is common for people to wait for months to see a rheumatologist for the first time. In the interim, stay in touch with your primary care doctor and see them for any change in your symptoms. They may be able to hospitalize you to jump start treatment of some sort.

 

You're very fortunate to be in the U.K., where they have truly fabulous world scleroderma experts who stay on top of all the latest developments.

 

:hug-group:


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.

#3 Joelf

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Posted 26 March 2016 - 08:02 PM

Hi Medusa,

Welcome to these forums!

I'm sorry to hear at you're experiencing such frightening and unpleasant symptoms, which could possibly be scleroderma.

Shelley is right; we do have some excellent scleroderma experts in the UK and do recommend that our members request a referral to one, as this complex disease requires specialist knowledge and expertise. The Royal Free hospital has a dedicated team of experts and nurses and they would be able to help, advise and treat you, so it's well worth trying to get a referral to them.

I can understand how worried and anxious you're feeling and I hope that you will be able to commence effective treatment very soon.

Kind regards,

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#4 Madusa

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Posted 27 March 2016 - 02:09 AM

It took me an hour to write my post on here, my hands can't use a computer so I have to use a tablet with a stylus......it was the best hour I have spent. I woke up this morning and felt better than I have done in months, the swelling is still there but my joints don't feel as stiff today. I don't know whether its because I final put down in writing what has been happening or that we have a little bit of sunshine here. Thank you, thank you, thank you for being here to reassure and advise on a practical level.

 

To be honest I had looked through quite a few posts on the site before I joined and have found a scleroderma specialist local to me in Salford if I need them. I had a bad experience several years ago going for every test under the sun at the hospital to find out why I was suffering from sea sickness to be told it was all in my head, I changed my doctor and he ordered a blood test (my last GP didn't think of that) to find out I was severely anaemic and I had hypothyroidism. Due to this I want to be as prepared as possible before my appointment to enable me to be in control as much as I can.

 I have found out a lot from all the collective wisdom that is on this forum and I would like to once again say thank you to each and everyone for not just being there and replying but for posting and enabling people in my situation to feel reassured :you-rock:



#5 Amanda Thorpe

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Posted 05 April 2016 - 01:40 AM

Welcome Madusa!

Prepping for your first appointment with the scleroderma specialist is a great ideas. Make notes, even audio record them and play to the specialist, if writing is hard. Take someone in with you, when you exit, you may forget something that you were told and they could even ask your questions.

Take care and let us know what happens.
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#6 Madusa

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Posted 06 April 2016 - 08:05 AM

On Saturday I was rushed to A and E again, this time with bleeding from the bowel and total loss of control of my left leg, it would hold my weight but refused to move. After an horrendous three days in hospital where no one would take me seriously and them falsifying records I was discharged.

 

Today I went for my appointment with the rheumatologist. I had done my research and wasn't expecting great things, I was wrong! I was scheduled for a 30 minute appointment, I came out 1 hour and 30 minutes later, he listened, asked questions, examined and gave me what he stressed was an initial diagnosis, mixed connective tissue disorder with arthritis. He wants to to undergo more tests and is looking at referring me to Hope Hospital who have more experience in this area. He explained that the diagnosis could change depending on what other symptoms present themselves. It was good to be listened to and not be fobbed off



#7 Joelf

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Posted 06 April 2016 - 08:21 AM

Hi Medusa,

 

What a horrible thing to happen to you and I'm sorry to hear that you had such a rotten time in the hospital.

 

However, how very fortunate that you've found a rheumatologist, who seems to be on the ball and has been so helpful and knowledgeable. It's a great comfort to have a doctor in whom you can have confidence and it makes all the difference to how you are able to respond to the treatment.

 

Please do keep us posted as to how you get on with your referral to Hope Hospital.

 

Kind regards,


Jo Frowde
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#8 Shelley Ensz

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Posted 09 April 2016 - 08:23 AM

Hi Madusa,

 

I'm delighted that you found a helpful rheumatologist. Hopefully this will help get you properly diagnosed, and treated.

 

:hug-group:


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.