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Sclereoderma raynauds GAVE exausted iron defic

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#1 TazzaP

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Posted 11 June 2012 - 12:17 AM

Hi everyone

I just found this blog! So happy!

I was diagnosed with Scleroderma at the end of 2009. I was exhausted beyond words, had started suffering from Raynaud's (although I didn't know what it was) and had been to every doctor who kept telling me to take more vitamins, eat healthy and exercise. They wouldn't believe me that I was so exhausted and I eventually thought I was turning quite mad and maybe it was all in my head.

I went to an alternative therapist eventually in a bid to try lose weight - I seemed to keep eating high energy foods as I felt so exhausted all the time. In any event he treated me for a while but after 4 months he gave me a list of specific blood tests that he advised I get done as he suspected I had something but did not want to tell me what he thought.

I went back to the general practitioner who was very anti and I said I would like him to please do the list of blood tests. He was very rude and tried to talk me out of it saying I was like every other young mum out there, I needed more exercise and to take my vitamins and there is nothing wrong with me. I told him that it was my health and I insist the tests are done. He eventually agreed and I had the tests done.

After a few days some results came in and he called me and sarcastically told me test results are in and as he told me I am fine and I must get on with it there is nothing wrong with me. A few days later he left me another voicemail but this time he had an apologetic ring to his voice saying I must call him straight away. Turns out the rest of the blood tests came back and these were the ANA Antibody bla blah tests and that yes something is wrong. GRRR.

I was sent to a rheumatologist who saw me once and just said let's monitor it and comeback in 6 months time. This time I was not going to be pushed around by doctors so I asked the general practitioner for a referral to a second Rheumatologist. I went and saw him and gave him copies of all the tests. He asked me questions, examined me and then told me I had Scleroderma. The man is wonderful, not very flowery or strokes on the head type of doctor but black and white - this test shows yes this and this test shows us that and explained everything and then proceeded to explain how we would treat things and move forward. Finally someone acknowledged the problem and had a plan!

I immediately went onto Nexium and Felodopine to treat the Raynauds and shocking heartburn. It did make a difference having these treated. After a few years though it seems things have progressed. I got pregnant last year and all the way through my pregnancy I kept losing iron, despite tablets, iron liquid, injections etc. It just went from bad to worse. After an unfortunate slip (due to a shopping centre's negligence) I injured my pelvis at 30 weeks pregnant and ended up being hospitalised and they delivered my baby prematurely as the damage was so severe. Coincidently my iron and haemoglobin went haywire and after birth I had to have some iron transfusions.

Now 5 months later I am even more exhausted - and it's not the baby that makes me tired as she has slept through the night since 7 weeks old! My rheumatologist has just sent me to a gastroentologist and on Friday I am having an endoscopy and gastroscopy done as they have no idea why my blood work in terms of iron and haemoglobin are dissappearing. The gastroentologist also noticed that I have Telangiectasia on my face - I didn't know what it was I just noticed I am getting them all over my body.

He said it's possible I have them internally? Now my question is - is this what I read on your site that GAVE is? I am confused. I hope they find something so they can treat it - my body feels like lead and just walking around doing normal things makes me utterly exhausted. I would like to know if anyone else has similar symptoms with their iron levels and if this is what they have? I just want to take a tablet and make it all go away so I can feel healthy and normal again and enjoy my two beautiful girls.

I am 35 years old and surely I shouldn't feel so shocking day in and day out? No amount of sleep helps me feel better - is anyone else like this?

Lastly, I am chubbing up big time and due to the pelvic damage I am not allowed to return to gym - I can only do clinical pilates at the moment and I haven't done that for 2 weeks as I got a shocking case of shingles. Guessing that may be cos my immune system is so low?

Any advice from anyone would be very welcome. I live in Melbourne.

Thanks so much everyone

#2 Robyn Sims

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Posted 11 June 2012 - 01:19 AM

Hello TazzaP,

Oh dear, what a terrible experience you went through to finally get a diagnosis!! Unfortunately your story about being told to "get on with it" is not all that unfamiliar. Things are improving with medical awareness but you really need to get a wonderful general practitioner for a start.

Sounds as though you have found the right Rheumatologist. Constant monitoring is so important.

In regard to the GAVE, yes the telangiectasia on your face could be also on the lining of your stomach and your gastroenterologist will help you deal with this. Others on this Forum will also give you lots of advice regarding their experience with GAVE as it is quite common with scleroderma.

And the tiredness!!! When I was in Florence at the 1st World Systemic Congress the Canadian Ontario presented a survey of 600 people with scleroderma and one of the interesting outcomes from this survey was that "Fatigue" was the number one as the most stressful factor people experienced. Since that time there have been studies undertaken and these are still ongoing.

June 29 is World Scleroderma Day. This day is so important as we don't want people to be misdiagnosed or brushed aside as you were. Scleroderma Australia and all those wonderful people around the globe trying to raise awareness are doing their best to raise the level of awareness of the word SCLERODERMA. Very few people when diagnosed have ever heard of the word, and it can be a very frightening experience, especially when you can look so well.

I thank you for posting and look forward to hearing what my friends on this Forum have to say.

#3 Joelf

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Posted 11 June 2012 - 01:47 PM

Hi TazzaP,

Welcome to these forums!

I'm sorry to hear that you've been suffering such unpleasant symptoms although it's a good thing now that you've found a rheumatologist in whom you can have some confidence. We do recommend that if possible you consult a Scleroderma specialist as this is such a complex and unusual disease.

To give you some more information I've included links to Fatigue, Raynaud's,Gastrointestinal Involvement which includes a section on Gastric Antral Vascular Ectasia (GAVE) and also Telangiectasia. I hope that you'll find them interesting and helpful.

Do keep posting and let us know how you're faring.

Kind regards,

Jo Frowde
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#4 TazzaP

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Posted 11 June 2012 - 04:49 PM

Thanks so much - I shall let you know what happens with the tests on Friday.

Just out of interest - if I wish to go to a Scleroderma specialist do I just make an appointment or do I get the general practitioner to make a referal to the specialist again - I am guessing the rheumatologist I currently see would have his nose put out a bit if I ask him to send me on?

#5 Robyn Sims

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Posted 11 June 2012 - 07:26 PM

Hi Tazza,

If you want another specialist rheumatologist, you can get a referral from your general practitioner. There is a Scleroderma Clinic at both Monash Medical centre and St. Vincent's Hospital. These are great places for those with scleroderma and they also have a data base and do lots of research there.

Of course you do have a perfect right to get a referral from your current specialist, but I understand how you feel about that.

Looking forward to how you go.

#6 Amanda Thorpe

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Posted 12 June 2012 - 04:58 PM

Hello TazzaP

Welcome to the forums! Yes, get referred to a scleroderma specialist right away so they can get the right tests done and evaluate the results and decide upon treatment.

If you have systemic scleroderma, and as a novice it sounds to me as though you have, you won't go back to the way you were but you will learn ways of living successfully as you are. You can feel better but maybe not as better as you once did. You will be able to enjoy your children again albeit differently. Have a read of the blog "Barefut Impression" because it's about a mum (single) with systemic scleroderma successfully raising two children.

Life after scleroderma can still be good it's just that life looks nothing like you thought it would be it's not all bad.

Take care.
Amanda Thorpe
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#7 TazzaP

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Posted 20 June 2012 - 11:24 PM

Hi everyone

Thank you so much for all your replies :-)

I have been for both the gastroscopy and the endoscopy and they took biopsies to check for malabsorption - he said in his report No colitis. no Crohns and no infiltrate with no obvious source of blood loss (this was the colonoscopy) and for the Gastroscopy part he took the biopsies and because he couldn't find any blood loss evidence there I have to go for a pill camera assessment.

Has anyone ever had this?

Thanks so much Tarryn

#8 Robyn Sims

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Posted 21 June 2012 - 01:46 AM

Hi Tarryn,

So far so good then. Looks like GAVE is not the problem.

Did you get onto a good scleroderma specialist yet?

I hope there is some more information for you from the others regarding the pill camera assessment.

Keep us posted on how things are going,

Kindest regards

#9 judyt

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Posted 21 June 2012 - 03:54 AM

Hello Tarryn,

You seem to be making progress ticking off things which need investigation, and hopefully you will get some more definite results before too long.

I have no experience of the pill cam procedure, but from what I have heard the pill is a quite small capsule, very easy to swallow, and one wears the recorder on your waist. The cam. makes its way through your system sending photos regularly to the recorder which is what the doctor uses to analyse the results.

There is a post somewhere here, in the past 6 months I think, from somebody who had this procedure, and a few years ago a friend of mine had the same test.

Sounds to me like a very good idea.

Best wishes
JudyT

#10 TazzaP

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Posted 21 June 2012 - 07:31 PM

Thanks everyone I shall try a search for that post JudyT - thanks.

They have no answer for my non existant iron levels that required iron transfusions - 4, so hopefully as you say they tick off, do everything and hopefully find the cause.

Thanks again

#11 Amanda Thorpe

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Posted 04 January 2013 - 07:03 AM

Hello Tarryn

So how are you getting on these days, how are you adjusting to life with scleroderma? It certainly takes time and most cetainly isn't something we'd choose! We now have a selection of videos about scleroderma that you might find helpful, have a look!

Take care.
Amanda Thorpe
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