Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Recent operation - advised to be tested for scleroderma

Reflux oesophagitis lap nissens laparoscopic niseen fundoplic LES Hypotonia

  • Please log in to reply
19 replies to this topic

#1 earthblaze

earthblaze

    Newbie

  • Members
  • Pip
  • 9 posts

Posted 07 December 2011 - 03:31 PM

Hi everyone,

I have been ill for 4 months with reflux oesophagitis which did not respond to medical therapy. Following an OGD I was diagnosed with Barrett's with multiple erosions. Due to a long wait for investigations and treatment and the fact of having pre-cancerous cells (Barrets). I opted to pay privately abroad. I found an excellent surgeon who spoke good English and specialised in upper gastro-intestinal surgery. I underwent oesophageal manometry which showed a hypotonic lower oesophageal sphincter (normal pressure is 10-15mm, mine was 2). Basically the sphincter between my oesophagus and stomach was not working which caused constant acid to wash up which is the reason for my problems. I had a laparoscopic nissen fundoplication 2 weeks ago (they wrap the top part of the stomach around the oesophageal sphincter to strengthen it). During my post-op check I discussed with the surgeon about scleroderma. He told me that reflux disease is usually a chronic disease (I'm only 48) but mine came on very quickly/aggressively and did not respond to medical therapy. He advised me to mention it to my general practitioner and be investigated. He said that scleroderma is known to affect the oesophageal sphincter.

After reading up on scleroderma I found that a lot of things 'fell into place' for me. I haven't felt 100% for about a 18 months now, nothing dramatic, just little things that were different. I think my first symptom was cold intolerance (over the last 2 winters, hands and feet cold which I put down to smoking but also feeling generally unwell after being out in the cold and taking ages to warm up.I have also experienced tiredness, extreme at times, which I put down to a busy job doing 12 hour shifts. I used to be able to do 5-6 shifts in a row without problem but I have struggles with two shifts in the last year.

I was diagnosed with an ulnar neuropathy (numbness and weakness in 2 fingers of my left hand) quite a few years back. I had nerve tests and the neurologist told me I had damaged a nerve in my elbow and that it would take 3-4 months to heal. He put it down to sleeping in a funny position. This happens to me 2-3 times a year and takes ages to clear up. I have never followed this up and have just learned to live with it. I have also developed skin dryness over the last 2 years, particularly on my face and it can get quite flakey despite daily moisturising.

Since January of this year I have had other symptoms that I have been to my general practitioner with. I developed a brown mark on my cheek which I though was a new mole and it is growing (now 1 x 1cm). My mum had one in exactly the same place and hers grew to the size of a 50p. She had it for 3 years and it disappeared this year. I also developed a lesion on my inner lower lip (blue/purple)in April, My general practitioner said it wasn't cancer and that we should 'watch and wait'. The lesion is still there (3 x 3mm) and hasn't changed or got any bigger. I have noticed my finger nails have changed in the last year, very fragile with lines running across them (from base to the tip). When I cut my nails they are sore for a few days (this is something new in the last 6 months). I have also noticed hard flat lumps 1cm on the top of the lower part of my fingers in the last 6 months (they don't hurt). They disappeared 2 months ago but came back this week.

I am due to see my general practitioner next Tuesday regarding my return to work. I am quite reluctant to present him with a 'shopping list' of vague symptoms, especially after having such a big operation. I am apprehensive thinking he will put it down me just being a hypochondriac. I have read that there isn't a test for scleroderma which also makes me believe that my general practitioner will not take me seriously. Any advice you can give me would be gratefully appreciated.

Many thanks,

earthblaze



#2 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 640 posts
  • Location:Auckland, New Zealand

Posted 07 December 2011 - 04:09 PM

Hello Earthblaze,

Welcome to these forums, where you will find a wealth of information. We are sorry to hear of your health concerns but it would seem you have come to the right place.
Others will chime in before long and give you links to the particular details which will help you sort out what is going on.

I don't know where you found information that there is no blood test for Scleroderma because as far as I know there is. The usual routine is to get a test called ANA which will identify antibodies in your blood and depending on the result of this test along with your symptoms a diagnosis can be ascertained. As you will discover these tests are not always absolutely definitive, but they can be a good guide, particularly if you have definite physical symptoms. In my case my symptoms, which are similar to yours, led to a ANA being taken then together they provided a diagnosis.

You don't say where in the world you live but with any luck you will be somewhere that there are specialist Rheumatologists who can help you.

If you approach your general practitioner with a request for a referral to a suitable Rheumatologist then maybe you will be on your way to a suitable response.

Best of luck, keep posting and making use of the information available here.

JudyT

#3 earthblaze

earthblaze

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 9 posts

Posted 07 December 2011 - 04:35 PM

Thanks for the quick response Judy. I live in the UK and went to Spain for my operation. I got a lot of comfort and reassurance on the UK gastric forums when I was really ill before my operation. Although seeing textbook symptoms etc is useful, I found the forums and people's experiences a lot more reassuring. It may sound silly but I am a charge nurse in intensive care (25 years). Despite this I am completely in the dark and very worried (even intensive care nurses are human!). I have never come across scleroderma during my career. I have heard of ANA and ANCA, we do these routinely with critically ill patients when the diagnosis has not been identified. I am usually very good at researching but as it applies to me its difficult to take in imformation. I am going to look at everything on your website over the next few days.

I think my main worry relates to a patient I nursed earlier this year. She had systemic pustulative psoriasis (it covered her entire body). She was very ill and ended up with respiratory failure and acute kidney injury. Thankfully the methotrexate we gave her worked and her kidneys recovered. We discharged her to the ward after 9 weeks in intensive care. They say too much knowledge can be a dangerous thing and its true in my case (I am probably worrying too much).

I do have intermittent psoriasis on my elbows but am now wondering if it scleroderma having looked at photos on google. Another thing I have noticed is that my middle fingers appear to be curving to the side slightly. My friends say I am imagining it but I know my own fingers. When compared to the fingers next to them you can see a difference. Maybe its me being too hyper-vigilant and I have just not noticed it before.

#4 Joelf

Joelf

    Star Ruby Member

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

Posted 08 December 2011 - 07:31 AM

Hi Earthblaze,

Welcome to these friendly and informative forums!

I'm sorry to hear that you've had a very worrying time with your symptoms and diagnosis of Barrett's Esophagus. However, your symptoms could be due to a number of different problems and not necessarily due to Scleroderma, which unfortunately can be notoriously difficult to diagnose, We do therefore recommend that if possible you consult a Scleroderma specialist, rather than a general rheumatologist as Scleroderma is a complex and unusual disease which unfortunately many rheumatologists do not have the expertise to deal with.

As Judy has advised you, there are blood tests that can be done to help with finding a diagnosis for Scleroderma but they are by no means conclusive as it's also possible to have Scleroderma and yet have negative blood tests or vice versa as some of our members can testify. Many of our members have had similar vague initial symptoms and only when other problems have manifested themselves have their rheumatologists been able to get any nearer to a diagnosis. I believe the average time for a diagnosis is 6 years! In my own case I suffered with Raynaud's, Carpal Tunnel and a general feeling of being unwell and poorly; it was only when I presented symptoms of lung involvement that my excellent medical team were able to diagnose me and start me on my treatment.

I can understand how worrying these symptoms can be, but it is easy to allow yourself to become very anxious (don't I know it!! ;) ) especially as you unfortunately come across very upsetting cases in your job. Perhaps as you're going back to your general practitioner on Tuesday you could discuss your fears with him/her and request a referral to a Scleroderma expert, if only to set your mind at rest.

Do please keep posting and let us know how you get on with your appointment.

Kind regards,

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)


#5 earthblaze

earthblaze

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 9 posts

Posted 08 December 2011 - 11:56 AM

Thanks for the advice, specialists, links and reassurance Jo. I think you are right about the worrying bit and it's nice to have someone tell you that. I had an umbilical incisional hernia repair (from a previous op) at the same time as the Nissens. Ideally it should have been meshed but the infection risk was too high having the Nissens at the same time. My navel bulged out several days ago and I was convinced the repair had come undone ... then it popped (abscess). Now on antibiotics and have been told it is only superficial. It has surprised me how all these things have taken an emotional toll over the last 4 months. I am going to take your advice and speak to my general practitioner on Tuesday. In the meantime I am going to try and relax and not think about things too deeply. I will start reading the links you posted in a couple of days.

Many thanks,

Earthblaze

#6 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 08 December 2011 - 04:31 PM

Hello Earthblaze

Welcome to the forums! I have to reiterate that there is no one definitive blood test to rule scleroderma in or out. I have diffuse and localised scleroderma and do not have the blood markers you would expect, my ANA and SCL-70 are negative, my blood work says there is nothing wrong with me! Even my rheumatoid factor is normal although scleroderma is a rheumatic disease. I also knon of members with positive blood work but no symptoms!Unfortunately the difficulty with blood tests is one of the reasons that scleroderma is so hard to diagnose and it can take so long to do so.

Have a read of the information you've been given and keep posting.

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)

#7 earthblaze

earthblaze

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 9 posts

Posted 11 December 2011 - 10:32 AM

Hi guys,

Just a quick update. This afternoon my fingers on both hands became cold and tingling. There is quite a big temperature differential between my arms down to my palms and my fingers. The ambient temperature in my flat 22.6 degrees (I like it warm). My capillary refill is around 3 seconds with no blanching/mottling to my fingers. The tips of my toes are the same as well (cold with warm feet).

Can anyone advise? Does this sound like Raynaud's? Bit upset since they came on as it's something new :(

Hi Amanda. I did reply to your post a few days ago but it hasn't been moderated for some reason.

earthblaze

#8 Joelf

Joelf

    Star Ruby Member

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

Posted 11 December 2011 - 02:01 PM

Hi Earthblaze,

I suffer with Raynaud's and one of the most noticable symptoms is that my fingers (and toes on occasions) become tingley, very cold and painful and totally white. The colour then gradually returns to them often going purple then red before returning to a normal colour. I've had Raynaud's for probably at least the last five years and I had a nailfold capillaroscopy which confirmed it was due to Scleroderma.

As you're going to see your general practitioner on Tuesday, perhaps you could include the symptoms you're suffering in your hands to help him/her to get a more overall understanding of the situation.

Kind regards,

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)


#9 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 11 December 2011 - 02:27 PM

Hello Earthblaze

Sorry about your post, I'm not sure where it went! I also have Raynaud's, diagnosed by capillaroscopy, however my fingers only turn white, never blue or red, in fact even when they turn white it's not that obvious. My feet are also affected but cramp is the worst symptom I get from the Raynaud's.

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)

#10 earthblaze

earthblaze

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 9 posts

Posted 12 December 2011 - 08:48 AM

Thanks Jo and Amanda. Have read quite few articles over the weekend (thanks for the links guys). I do feel more like I am 'armed with ammunition' if case my general practitioner fobs me off on Tuesday. My umbilical hernia repair is still oozing but the culture on Monday did not grow anything (strange considering I drained 20ml pus). I emailed the consultant surgeon in Spain yesterday and he replied an hour later (how good is that!). He told me not to worry and it gave me a dressing plan and reassured me it would clear up in the next week without further intervention. Can scleroderma affect/delay wound healing? I have done an internet search but could not find anything.

Many thanks Philip

#11 Joelf

Joelf

    Star Ruby Member

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

Posted 12 December 2011 - 12:26 PM

Hi Earthblaze,

Scleroderma can affect wound healing and I've included a link for you which I hope you'll find helpful and informative.

Kind regards,

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)


#12 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 12 December 2011 - 03:05 PM

Hi Earthblaze,

Welcome to Sclero Forums. I'm sorry its because you have concerns about possible illness, and send my best wishes to you.

I know it's very hard, and probably goes against all your instincts, but this is probably the time to sit back, relax (ha!) and let the doctors do their evaluation. It's probably impossible to get up to speed on how to evaluate every possible symptom of scleroderma in a short time. Certainly, we are not fit/able to define which symptoms of yours meet (or don't) the criteria for scleroderma, either.

I'd share your concern over giving your provider a shopping list of vague symptoms, because more precise and verifiable symptoms are definitely helpful when it comes to scleroderma -- tight skin and pulmonary fibrosis, for example. Even if you did have some form of arthritis, disability issues would be based on exactly how (or if) they impair your daily functioning and prevent your ability to work.

My question would be, what would YOU recommend to a person in your particular position? If someone else was in your exact same shoes, like me, what advice would you give them?

I dare venture to guess, you'd advise me to just chill a minute, tell my doctors I am concerned and perhaps being overly anxious but who in their right mind wouldn't be if they were told to get examined for scleroderma, for pete's sake, and to wait and see what they have to say about THAT. Unfortunately, neither worrying or hoping is going to change the course of events. It will be what it will be, and we'll be here for you whether you have scleroderma or not or other illness or not.

:emoticons-group-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.

#13 earthblaze

earthblaze

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 9 posts

Posted 12 December 2011 - 05:34 PM

Thanks for the link Joelf. Shelley, you are 100% spot on with your frankness and advice. I really appreciate you replying. Sometimes we do need a reality check when our emotions are all over the place. I will mention to my general practitioner what the surgeon advised and see what his response is.

#14 earthblaze

earthblaze

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 9 posts

Posted 13 December 2011 - 11:35 AM

Just a quick update. I saw my general practitioner this afternoon. My general practitioner retired last month and I saw his replacement (a young male general practitioner who has just joined the practice). He seemed to know about scleroderma and checked my hands and nails thoroughly. He told me that scleroderma is very difficult to diagnose and is usually made on obvious symptoms. He said I may have scleroderma although he personally doesn't think it is that. He told me scleroderma treatment is symptom specific and is based on how it affects your daily life and activities. If any of my vague symptoms become more evident he has advised me to go and see him again. In the meantime he has advised me not to think about and concentrate on recovering from my operation.

I think I am going to like my new general practitioner.

#15 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 13 December 2011 - 12:11 PM

Hello Earthblaze, welcome to the forums!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#16 Joelf

Joelf

    Star Ruby Member

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

Posted 13 December 2011 - 01:07 PM

Hi Earthblaze,

I'm very pleased to hear that you had a good appointment with your new general practitioner. It's a good feeling to have someone who can understand the complexes of this bizarre disease and can, to a certain extent, put your mind at rest.

Kind regards,

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)


#17 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 13 December 2011 - 08:34 PM

Hi Earthblaze,

Oh my goodness. You have certainly landed what sounds like an excellent new general practitioner! That was a perfect way for him to have explained things. It means he's not discounting any of your symptoms, I'm sure he will pay attention if anything more pronounced rears its ugly head, and in the meantime he has certainly steered you right as to focusing on recovery from your operation now.

I am enormously happy for you. Can you put him in the copy machine and duplicate him by the thousands? So many people get such poor responses, which really only worsens their concerns, raises more doubts, and intensifies the worry.

Thank you for letting us know how it went. This is one of those rare moments when we get to throw a Sclero Happy Dance. This dance is not because you're totally well, or will never have another concern (and for a spell you still might understandably feel a bit as though you are waiting for the other shoe to drop) -- but for you to have landed a thorough, compassionate and understanding doctor who sounds like a real keeper. Which means you really can relax and focus on healing now.

Do you feel like a huge weight has been lifted off your shoulders? Yes, time for a Sclero Happy Dance! :emoticons-yes: :happy-day:

:emoticons-line-dance:
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.

#18 earthblaze

earthblaze

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 9 posts

Posted 14 December 2011 - 01:29 PM

Thanks Shelley and Jo. Yes I do feel like a big weight has been lifted. I could get hit by a car in a few months ... who knows but I am not going to spend time worrying about it and will apply the same thing to my symptoms. Fortunately, unlike so many of your members, I have vague symptoms that do not impact on my life. If they do in the future I will deal with it at the time. Thanks for all your advice.

#19 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 14 December 2011 - 09:36 PM

Hi earthblaze,

A lot of good advice has been given to you, some that I needed to read again. And you have given good advice, reminding me to deal with it at the time.

miocean
ISN Artist

#20 earthblaze

earthblaze

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 9 posts

Posted 15 December 2011 - 07:51 AM

miocean, I have been given really good advice on these forums which has helped me a lot. I am glad that I have helped you in some small way (ie given something back).





Also tagged with one or more of these keywords: Reflux, oesophagitis, lap nissens, laparoscopic niseen fundoplic, LES Hypotonia