Jump to content


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


Photo

Awaiting Diagnosis, Any Hope?


  • Please log in to reply
6 replies to this topic

#1 HopeAboveAll

HopeAboveAll

    Newbie

  • Members
  • Pip
  • 4 posts

Posted 23 August 2013 - 01:54 AM

Hi, 

 

I am 33, and my oesophagus has weak motility (proven by manometry) and I have severe severe Reflux. I also have scarring in my penis. I have no confirmed diagnosis yet. 

 

I am so depressed. I can't see any hope for men with this disease. As a grown man I have never cried so hard or for so long. 

 

I am off to see a sclero specialist today. I am petrified by what my future holds or does not more to the point. I am absolutely terrified and depressed. I am trying each day to come to terms with the probability of what's wrong with me,. 

 

Are there any hope stories? I just want to get married to my amazing lady and try for a baby. My ultimate wish is to grow old with my girlfriend. But that looks like all but impossible now! 

 

Please any men in particular with success stories... ladies too, but I want to try and see if men can survive anything like ladies can with this?



#2 Joelf

Joelf

    Star Ruby Member

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

Posted 23 August 2013 - 10:31 AM

Hi HopeAboveAll,

 

Welcome to these forums!

 

I'm sorry to hear that you are feeling so worried and anxious about a possible diagnosis of Scleroderma. I do understand how alarming it can be and I've included a link to our page on Depression and Scleroderma which I hope you'll find helpful and interesting.

 

I'm pleased that you've been able to consult a Scleroderma specialist; we do recommend that if possible, our members do obtain advice and help from a Scleroderma expert, as sadly many rheumatologists do not have the knowledge and expertise to deal with this complex disease.

 

Although I haven't experienced the exact problems you describe from having Scleroderma, I can let you know that a diagnosis is of the disease is by no means the end of life as you know it! I have lung involvement, but thankfully it was treated aggressively and successfully and I can verify that my quality of life is still pretty good, (not least because of the super people I've met through having it) although the disease does vary from person to person. I've also included a link for you to our medical page on Sexuality and Scleroderma which I hope will give you some more information; there is a link Penile Involvement in Systemic Sclerosis: New Diagnostic and Therapeutic Aspects  further down the page which I'm hoping you'll find particularly helpful. It's also possible that we do have male members who may be able to give you some first hand advice.

 

Now that you've joined our community, I hope that you'll continue to post and let us know how you get on with your appointment with the Scleroderma specialist.

 

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)


#3 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 24 August 2013 - 05:37 AM

Hello HopeAboveAll

 

Now hold on a minute who said you're going to drop dead?! Sure systemic scleroderma can be life threatening and life limiting, yes some people crash and burn quickly, some after 10 years, some after 20 some after 30 and more, no one here can tell you which one you will be. The quicker you are diagnosed and treated the better your chances. Jo Frowde recovered from pulmonary fibrosis thanks to quick diagnosis and treatment (and being very healthy at the time) but I also know people with pulmonary fibrosis who are on oxygen 24/7 as a result.

 

In 2010 I was diagnosed with myocardial fibrosis (scleroderma hardened area of heart muscle) and had an ejection fraction (measures how well the heart pumps blood around the body) of 32%, normal is 55% and the year before it had been 50%. My life expectancy was around 2 years at that time but thanks to implantation of a biventricular ICD my ejection fraction is now 55%. My dear friend (described by medical professionals as having the worse case of scleroderma) spent her first holiday with us and we thought it would be her last, this year will be her third with us provided she accepts our invitation again of course! As above Jo recovered and her life is much the same as it was although different...make sense?

 

Whether you marry and have kids is something you have to decide. For 20+ years I have been with my beloved, married to the man of my dreams, he's older and I always thought he would retire down to working a few days a week (not the type to stop work completely) and I would work full time but as it happens I retired at 40 due to ill health and my husband is now my carer. Not what we expected but we are more in love than ever and many healthy couples can't say that, everything is different but we have made it better, we determined to make the most of it. That's all you can do whatever life you have and let's face it no one knows what's down the road, perfectly healthy people marry, have kids and hey presto disaster strikes! Disaster, whatever guise it comes in, only brings out what is already there in the relationship, if it's bad that comes to the surface and people split, if it's good that comes to the surface and people don't.

 

Now I can't deny that sclerodemra has taken more that its fare share from me, good health, control over body, mobility, career, ability to work,  independence, the future I expected, the time I expected (people with heart involvement can have a shorter lifespan) but it has given me as well, the people I have met through having this disease have brought joy, hope, hilarity and purpose into my life. My husband and I are aware of what we have, so often we just drift through life, we worry about work, let me tell you nothing I ever worried about at work was worth the effort!

 

Have a look at our emotional adjustment video (by yours truly) because we can help ourselves, it's not about giving up and letting the disease trample us underfoot. Yes grieve your losses but then move on! Wallow and get whalloped! Eat well, rest well, manage stress, these are things we can do and by doing what we can we gain some control over what's happening to us.

 

There's still good life to be had after scleroderma, it's just that life looks nothing like we thought it would but that's not becessarily a bad thing!

 

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)

#4 judyt

judyt

    Gold Member

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

Posted 24 August 2013 - 08:11 PM

HI,

 

I know that I have had Systemic Scleroderma since I was 22 and lately I have been remembering things from my childhood which make me think that maybe it started when I was about 11!!

 

Whatever! I will be 70 in February and have been married almost 48 years.   I have two grown up children and three granddaughters the eldest turning 21 this week.

 

Today my husband and I have been out with the car club we belong to.   First we went 10 pin bowling and I had third highest score, then we all went on to a seaside cafe for lunch, great fun.   Wednesday we are out to lunch with the Boating Club we have belonged to for many years - ex yachties we all are with gammy hips and knees and cancers for some and sclero for me but nobody lets that bother us.

 

You possibly know by now, from your visit to the specialist, something about what you are facing, but as Amanda says it certainly is not the end of things at all.   It will be different maybe but life goes on and we get what we can out of it.

 

Right now I need a sleep before I start dinner so au revoir for a while.

 

Judyt



#5 HopeAboveAll

HopeAboveAll

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 4 posts

Posted 26 August 2013 - 06:36 AM

Hi all.

Thanks for the replies. The specialist told me she disagreed and there were no current indicators for sclero. She said my manometry was bad but did not mean sclero. But she wanted to run tests. Skin score was 0. She then ordered a thermography test, a doppler. Bloods and nail bed capillaroscopy. I have to wait 4 weeks for the result. The thermography identified primary not secondary Raynaud's, whatever that means and my doppler test was fine. Just waiting on bloods and nail bed test. I have been in bits. I know I should be coping better and I am doing my best. My oesophageal symptoms just constantly remind me of the situation though so it's hard to forget about, as a result.

I take some hope from each of you...Thank you again for your replies :)

 

Joelf and Amanda. THANKS SO MUCH for the detailed links, they are very informative.



#6 judyt

judyt

    Gold Member

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

Posted 26 August 2013 - 02:36 PM

Hi,

 

Primary  Raynaud's Phenomenon, as far as I understand it means that the Raynaud's is a disorder on its own.   Secondary means that it is caused as a consequence of the Scleroderma.   Scleroderma is classed as a Vascular disease and Raynaud's is a disorder of the blood vessels hence the connection.

 

Raynaud's is often the first noticeable effect of Sclero and one can't be diagnosed with Sclero without some Raynaud's as far as I know so it looks like you are verging on getting away from it.   You say your doppler was OK mine never is!   But I have almost no skin involvement except on the tips of my fingers so I think my skin score would be somewhere 0 too.

 

It is a tricky thing to diagnose but you seem to be heading in the right direction so keep your chin up and hope for the best.

 

Best wishes,

Judyt



#7 HopeAboveAll

HopeAboveAll

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 4 posts

Posted 27 August 2013 - 12:10 AM

Thanks Judy.

Yes I also am of that understanding re Raynaud's now. The man who was doing the thermography obviously knew his stuff. He was part of the scleroderma unit. He stated my fingers rewarmed indicative of Primary Raynaud's not secondary. I don't know more than that, and he stated they went hotter than my hand within 13 minutes so again indicates primary not secondary?

It's all very daunting. All I know is my esophagus recently stopped behaving and it's horrible in it's own right.

I can only see how it goes now.

Just a small point to clarify. The specialist said my manometry was bad but did not mean sclero simply on its own..... hence the tests. .

It was my rewarming curve that indicates primary. This is still to be evaluated by blood tests etc. I think I have it to be honest. That's 2 of the 5 crest symptoms, osophogeal motility and Raynaud's.... I am sooo nervous and doing my best not to be :(

J