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Hello, officially diagnosed with diffuse scleroderma on Sept 29, 2008


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#1 Tully

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Posted 11 December 2015 - 04:40 AM

Hello Everyone, new member here. I just found this forum while looking at information about biologics. Here's the very condensed version of my story. Back story, I'm a forty-five year old male, nondrinker, nonsmoker, no illegal drugs, active in various sports, rode motorcycles and drove a CJ7.

First noticed symptom was in December 2007. After a few weeks seeing a GP, I was referred to a rheumatologist. They didn't think it was rheumatoid arthritis (RA), but treated me for it anyway.

After a few months, the symptoms were getting worse. Hitting a golf ball caused a lot of pain in my hands, I could barely ride my bike 30 minutes before it became too uncomfortable to ride and the tips of my fingers were starting to curl.

The doctor and I were talking about going to a RA center for some fresh eyes. He said something about joint/bone pain and I said, "No, more of a muscle skin pain." I've broken a few bones and there's a definite difference. I saw the light bulb explode. He said scleroderma, and I said what?

I got an appointment at the Medical University of South Carolina in Charleston on September 29, 2008. After an hour of paperwork and an interview with the Resident, the doctor came in, asked a few more questions, and did the pinch test, I scored a 24. He said yep you have Diffuse Scleroderma.

Prior to the appointment, I had Googled scleroderma and knew I did not want it to be that. Sitting there on the table, 3rd year student, intern, resident and the doctor said "Okay, here's the deal, anything over 17 is diffuse, there is no cure, treatment is terrible, your quality of life is fixing to fall off a cliff, I'm estimating you have 2-3 years." He said my only hope was the SCOT Trial but don't expect a lot. I said sign me up.

The rest of the day was full of a ton of tests. I live in Georgia, 5 hours from Charleston, but I don't remember the drive home. It took about 3 more trips to MUSC and then the Duke Hospital for a solid 3 days of test before getting accepted into the SCOT trial.

The trial is/was a year of cyclophosphamide or a Stem Cell transplant. From my research, I wanted the transplant and of course the computer put me in the year's worth of chemo. My last ride was February 2009 and by May, I could not get in my CJ.

I started chemo in July, and by the holidays I was in a wheelchair. My last chemo was June 2010 and I could barely walk 20 feet. I knew the end was near.

In July I had a conf call with MUSC, Duke, and my insurance company, and it was decided I would go through the transplant. They gave me until September to get over the chemo, then another week at Duke for back to back, 5 days of test and exams. I was given the green light to have the transplant. November they did the harvest, December 2 I checked into Duke for the transplant. December 23rd, I went to a apartment close by because I had to come to the clinic every day. Came home on February 1.

By Memorial weekend I could live alone. In July I drove into town to have lunch with the work gang. Over the holidays in 2011, I threw my wheelchair in the basement. I still can't ride my Duc but I can get in my CJ.

I'm 53 now. Take that scleroderma!

So everyone, keep up with the good fight. If anyone has any specific questions about anything, just post them and I'll answer them when I can. I'm medically retired on disability. I don't like it at times but there are times it is nice not having to work. It's Friday, so that means lunch with the old gang. I'll be back later

Tully

#2 Shelley Ensz

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Posted 11 December 2015 - 11:20 AM

Hi Tully,

 

Welcome to Sclero Forums!  I am delighted that you were in the SCOT trial, and that the stem cell transplant worked for you. 

 

Many of our members have had questions about stem cell transplants, and it is very nice to hear a success story about it!

 

: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 miocean

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Posted 11 December 2015 - 11:40 AM

Hi Tully,
It is great to hear such a positive and upbeat story! I've been hit with a lot of negatives lately and you made me feel better.

I am an "old timer" on the forum. I am glad you found us and hope you'll hang around. There are several other guys who could benefit from some male company.

Continued success on your journey.

miocean
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#4 Joelf

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Posted 11 December 2015 - 12:06 PM

Hi Tully,

 

Welcome to these forums!

 

I'm very pleased to hear that you've had such a successful outcome from your transplant and it will be very helpful if you're able to share your experience with our other members.

 

Kind regards,


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#5 Tully

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Posted 11 December 2015 - 02:25 PM

Wow, positive, upbeat, successful outcome are not words I associate with SD, the SCOT trial or my current condition.  To me, this disease is cruel and vicious and we need to fight it with equal ferocity.  Make no mistake, I'm glad I made it thru to the other side, but I also know my quality of life is pretty poor.  Can't participate in my sports, ride a motorcycle, have a relationship, drive a stick or even operate a game controller to play video games with my son. But, I am alive and still kicking, just not as hard as before.  Yeah I'll admit I'm maybe a bit more cranky than I used to be.  Not being able to rub your own feet at the end of the day can be a little frustrating.

 

I do realize that I should share my "success" with others fighting this disease and other auto immune diseases, so if anyone has any questions please fire away.  Over the years, I gotten used to all the questions and if I can help anyone, cool.  If anyone wishes to contact me privately, let me know and we'll figure a way to communicate privately.

 

And I will try to write my posts in a manner that require less editing.



#6 Joelf

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Posted 11 December 2015 - 09:18 PM

Hi Tully,

For anyone who would like to communicate with you privately, we do have the Personal Message (PM) facility.

If you go to the very top right hand part of your screen, just click on the little envelope by your user name. This will bring up a small pop up with " Compose new" on it. If you click on that, it will take you to another screen to enable you to send a PM to the member of your choice.

On the mobile version, just touch the little square box in the right hand side of your screen and that will bring up the option of messaging; press the envelope icon and that will take you to a screen to enable you to compose a new message.

If anyone's having any problem with the above, then please let me know and I'll try and sort it out for you.

Kind regards,

Jo Frowde
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#7 Amanda Thorpe

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Posted 12 December 2015 - 01:09 AM

Welcome Tully!

 

Liked the analogy of quality of life being hurled off a cliff by scleroderma and congrats on coming through the transplant. Your quality of life has improved but not returned to as it was pre scleroderma, a common theme. 

 

I was diagnosed a year prior to you, nearly checked out in 2010 with myocardial fibrosis and have been using a wheelchair since 2007 and have been totally dependant on it since around 2012. 

 

Quality of life, unsurprisingly, is a huge issue for us enduring this disease and it's been discussed many time before and no doubt will be in future. Have a read of a blog I wrote "Adjustable Horizons", inspired by other members' discussions of how our lives has change BUT that we can still have quality. Compared to pre scleroderma we have no or little quality but if you squint and look again, it's possible to see things differently, softly diffused, no hard edges and lots of quality.

 

Take care and keep posting.


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#8 Tully

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Posted 12 December 2015 - 10:15 AM

Amanda,

 

I read your blog and can related to some of it.  Especially the Cowboy,  I'm to lazy to type the whole story but like you I wanted to kick him in the britches!

 

This effects of this disease are so varied, it is scary, Reading your story and a few others on here, I sound like a whiny brat,  While my life has changed dramatically, I still have my independence and can take care of my son.  I have friends that are careful around me when they are complaining about their aches, pains or life in general.  They know mine are so much worse.  Now I'm feeling the same.  Besides the skin, connective tissue hardening on me, the only skin issues I have had were a few ulcers on my finger tips.  My hat is off to you and the others that have it allot worse than I do.

 

Lastly, your husband sounds like a very stand up guy.  I wish I could give him a knuckle bump.  My hands don't allow me to shake hands anymore.  And your writing is very good, thanks for taking the time to post up your story

 

Tully



#9 Amanda Thorpe

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Posted 13 December 2015 - 05:10 AM

Tully, your life has changed dramatically thanks to scleroderma. I kinda think that's enough to make the stoutest of people blubber, let alone whine! I mean, are you kidding me?! You had a diagnosis of scleroderma after enduring years of misdiagnosis, underwent a stem cell transplant and survived, can't use your hands properly and have digital ulcers. Do you have any idea how many people would have collapsed and died under all you have been through? 

 

Tully, I suggest that, going forward, you give yourself the credit you deserve.

 

Take care.


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#10 Shelley Ensz

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Posted 14 December 2015 - 07:21 AM

Ah, my favorite quote of the day, "Tully, I suggest that, going forward, you give yourself the credit you deserve."

 

Couldn't we all, shouldn't we all, give ourselves the credit we deserve?  I hope everyone reading this who is affected by scleroderma or illness or adversity in any way, takes the time right now to pat themself on the back, and give themself more credit, if only for surviving it so far, rather than berating ourselves for not merrily thriving our way through every single second of it.

 

: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.

#11 Joelf

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Posted 14 December 2015 - 11:42 AM

Shelley Ensz, on 14 Dec 2015 - 6:05pm, said:

 

Ah, my favorite quote of the day, "Tully, I suggest that, going forward, you give yourself the credit you deserve."

 

 

Thanks, Amanda; another great quote, which I've put on the Global Banner to inspire us!


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#12 Tully

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Posted 14 December 2015 - 06:18 PM

Back again. I understand what you guys are saying. But reading a few of the stories on here, Amanda's blog, I realize some/a lot have a ton worse than I. It was 11 months from the first symptom to the "official" diagnosis. I did not have to deal with the years of frustration some have gone through. When I was first diagnosed, I learned very quickly, not to look at the pictures on the web. Beyond scary. Seeing the pictures on this forum and knowing the name associated with them is gut wrenching for me. I've had a few digital ulcers that were maybe 5 mm in diameter. Nothing compared to what I've seen on here. Until stumbling upon this forum, I have only met one person with scleroderma. I was going through my harvest process and it was her last day there. So now, 5 years after my bone marrow transplant I'm dealing with the nightmares again and hearing my Dad say, "Careful son, there's always people that have it worse than you."

Yes, I miss my Ducati, the golf course and tossing the (American) football with my son, but at the end of the day, I'm able to live independently and still take care of my son. Working on the CJ, refurbishing furniture and chores around the house are a lot harder but I have managed. If I can't do something, I just ask a friend or just call someone and pay them to do it. I'm lucky that I had a really good job with decent benefits. So, reading what you guys are going through is very humbling and I'm honored to be so willingly and warmly welcomed to the group.

Okay, allergies are kicking in, 'Nite all



#13 Shelley Ensz

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Posted 15 December 2015 - 03:22 PM

Hi Tully,

 

Oh don't worry, we are all used to always thinking everyone else has it worse than us on some days, and that we are the worst of all, on other days.

 

For each of us, our journey and our situation is better than some, and worse or even much worse, than others. So all that really matters is that we tell our stories, and share our journeys, and be there for each other.

 

We are all in it together, and our togetherness makes all our collective joys, and sorrows, easier to bear.

 

: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.

#14 greypilgrim256

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Posted 16 December 2015 - 02:58 AM

Hey Tully.  Did you ever find out which scleroderma antibody type you have?  Scl70?  RNA III?  U3RNP?  Those are all associated with diffuse.  



#15 Tully

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Posted 16 December 2015 - 07:57 PM

Hey GP, sorry, can't answer that question. Searching the hits on Google was not helpful either. I'm still in touch with my case manager in MUSC, I'll ask her tomorrow. So, why do you ask? Are there different treatments related to them? I did see something I had not heard before, one of the studies I was looking at concerning the Anti-U3 RNP autoantibodies said that the skin may loosen up after a few years. Has anybody seen this happen? Mine has to some degree, but I thought/think it was due to the BMT not the disease releasing its grip.

Does anyone know if there's a procedure they can do to relieve the contractures in my hands? It would be so nice to open my fingers a little more



#16 Joelf

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Posted 17 December 2015 - 02:41 AM

Hi Tully,

 

I have very little skin involvement (merely the tips of my fingers) but I understand that some of our members, particularly with diffuse scleroderma, have experienced skin softening after several years.

 

I've included links to our pages on Skin Fibrosis and also Hand and Joint Involvement , which includes information about Sclerodactyly and Joint Contractures, and also another link regarding possible treatments which I hope you'll find helpful and interesting.

 

Kind regards,

 

 

,


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#17 Tully

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Posted 17 December 2015 - 09:07 AM

Hey GP, here's what I got back this morning

 

I looked in your med record, lab history.  The SSc type labs that we did with corresponding results are...
ANA - negative 
Double stranded DNA antibody - negative
Scl-70 - negative 
SM-Rnp - negative 
Smith antibody - negative
 
Those are the only ones I see.  
These were done over 7 years ago and may have different results now.
 
Hey Jo, thanks for the info.  Busy day for me and I pick up my son tomorrow, so it may be a day or two before I get to the sites listed.
 
Thanks


#18 Amanda Thorpe

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Posted 28 December 2015 - 01:55 PM

Hello Tully

My SCL-70 is and always has been negative but my ANA became first time positive last year.

I have a stonking case of sclerodactyly, if you watch our video of that title, you'll see me and my sclerodactyly! Rather have my shadow, but hey!

No, I know of nothing to help it other than UVA-1 Phototherapy to soften the skin (see details on site), or an operation in which they reset the fingers as straight but you don't get anymore movement just more asthetically pleasing and apparently easier to care for. I'd need a bigger pay off to have my fingers and thumbs broken, reset, in a cast etc. but that's just me.

Take care.


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#19 Tully

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Posted 31 December 2015 - 06:31 AM

Amanda,

 

Thanks for the info.  No way am I going to go through that just to have straight fingers that don't do anything.  I think that procedure would make a bad situation even worse.

 

Hope everyone has a good time tonight, be safe.

 

Lets have a great 2016



#20 Shelley Ensz

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Posted 31 December 2015 - 08:49 AM

Here is the link to Amanda's video on Sclerodactyly (hand involvement in systemic scleroderma).

 

: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.