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Biomarker for Diffuse Scleroderma skin has been discovered!


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#21 quiltfairy

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Posted 22 October 2014 - 02:20 PM

I saw the sclero doctor today; there was a lot to take in. He was concerned about the loss of hair on my arms, I am not sure why; he also talked about a bone marrow transplant for lung problems in December. I have more tests to determine exactly what form of Sclero I have; he is doing a MRI on my muscles to check for swelling inside the muscles and a pulmonary function test and also a echocardiogram for my heart. He was concerned about the problems with the muscles and that possibly they are not getting enough oxygen; now I am really scared.

 

I had a driver but I really don't want him again; he talked all the way there and all the way back and he gave me no chance to process all the info on the way back with his insensitive talking about his past jobs. It wore me out worse than seeing the doctor; when I told him I wanted to take a nap in the van I laid my seat back and he talked even louder! I think he just want to hear himself talk. Sorry about the ranting.



#22 judyt

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Posted 22 October 2014 - 11:14 PM

Hi quiltfairy,

 

Sorry to hear that you found your visit to the Sclero doctor today to be frightening.   The sort of things that you describe him talking about, in my opinion, are the things that most of us here are used to hearing.

 

There are many many different ways that Scleroderma can affect us and we are, each of us a unique example.  The thing is to find somebody who knows about all these different things and is prepared to check each and every one out one by one.

 

I have had Sclero for many years as you will know if you have read my other posts and still I am learning about aspects which could be, or are in fact, affecting me.

 

My muscles seem to let me down on a daily basis and still no answer is popping up but I have not given up on maybe finding something that will help.

 

My lung function tests show excellent capacity and very low quality gas exchange.   The Respiratory Specialist's opinion is that my lungs are fine but the blood vessels which are part of the gas exchange are affected so I have to take 3 breaths to get the same input of oxygen as the average person my age.  That is what Sclero does to us and if you know what is going on then we are in a position to accept it.

 

I hope you are able to calm yourself down and wait until the tests have been done and see what turns up, if anything.

 

Best wishes

Judyt



#23 Joelf

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Posted 23 October 2014 - 05:55 AM

Hi Quiltfairy,

 

Unfortunately, it can be alarming when you have your appointment with a Sclero specialist; it can help if you are able to take a friend with you and can jot down the salient points, as it can be rather overwhelming at the time. I do hope that your test results will be okay and help him to arrive at a diagnosis and thereby be able to advise you of the best treatment.

 

I'm sorry that you had Mr Sensitive driving you to your appointment and back again; it never ceases to amaze me how thoughtless some people can be, especially as he must have realised that it was a hospital appointment, not a social outing!! It's difficult in those circumstances not to appear rude; perhaps next time, if you have that driver, you could simply plug in your music player and sit there listening to some soothing music, oblivious to his chatter!  ;)  ^_^ 

 

Kind regards, 


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#24 Shelley Ensz

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Posted 24 October 2014 - 07:17 PM

Hi Quiltfairy,

 

My goodness, did you ever have a productive time with the scleroderma expert!  In the beginning, it can all make your head spin, can't it?  I know it is alarming to have more questions raised than answered in the beginning.  It sounds like you're going to be in for it, for a spell.

 

I will be sending lots of good wishes your way, and rooting for you as you go through the tests.

 

You could try bringing ear plugs or headphones for your next trip, to and fro. Even if the headphones aren't plugged into anything, nobody will know. I know what it's like to need time to process things. It's okay to do whatever is necessary to claim your quiet time and you have our permission and encouragement to do so.  After all, it looks like you are headed for *lots* of trips so they might as well be as pleasant as possible.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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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.

#25 quiltfairy

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Posted 25 October 2014 - 02:42 PM

Thank you all for your kind thoughts. 

 

My next visit is set up but not with the same driver, my son can drive me and he can go in with me to take notes. He and his wife have volunteered to be bone marrow donors and I am pretty sure that my son will match as he is also O negative.

 

His wife has also volunteered to do anything to help, I think she will be staying at my house and watching after the dogs.  I have a husky mix and Shar Pei and  since I cannot afford to kennel them it would be a great help.

 

My aunt has also given me a solution, she lives about half way between here and there so I could spend one or two nights with her and her husband .

Thanks for the warm hugs, they are greatly appreciated. I am sending some back to you :emoticons-thankyou:  :thank-you: this is the best I could do I could not find

the warm hugs.



#26 judyt

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Posted 25 October 2014 - 07:01 PM

Hi Quiltfairy,

 

That is a more positive story, it is so good to be able to find a way around difficult things and get the help you need.

 

To find more emoticons, click on the smiley face and that brings up a list across the bottom of the screen, then click on Show All.

 

Best wishes :emoticon-hug: :emoticon-hug:

Judyt



#27 Amanda Thorpe

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Posted 30 October 2014 - 03:25 PM

Hello Quiltfairy

 

It's a guess but maybe the interest in the hair loss on the arms related to tight skin? I lost all the hair on hands, feet, arms and legs when they were covered with tight skin. It just all fell out and I never noticed at the time and get this, when the skin softened it grew back...long and black...because that is just what a woman wants on her limbs isn't it?!

 

Go with the earplugs or earphones and speak up and say "I am devastated and wish to process this in peace so please stop talking. I just know you'll understand what I am saying as you do this job regularly and so well." You're going to have enough on your plate managing your own feelings without worrying about those of a total stranger who is getting PAID to drive you!

 

The phase you are in, the fear phase, will eventually move into another and where you are will soon be a memory you share with others on the forums, who will then find themselves, where you are now. 

 

Take care and keep posting.


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#28 quiltfairy

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Posted 05 November 2014 - 11:15 PM

The fear has been helped with this site because I now know what is going on with my body.

 

When I was first diagnosed no one seemed to know anything about the illness just that it was a rare disease; I was really scared at that point not knowing what was going on. It is bad when your doctor does not know what to expect; she only had one other case of it so I got on the internet. Some of the things you can read can be very scary and I have found a lot of them to be untrue, so thank goodness for this site where I am learning the truth. I also gave this website to my doctor and my therapist and to the physical therapy department; they all said it was very informative.

 

My son is taking time off work to take me to my next appointment; any others I have to drive to, I can stop half way and spend the night with my aunt.

 

I had a talk with the young man that took me last time and he just did not seem to get it. He said he had a great time and was looking forward to my appointment in December. I informed him at that point that he would not be driving for me again; he also stated to me that the reason he drove was for him to go and visit a friend that worked at the university as I understand his parents are the same way. I also found out that he does not have a driver's license and that the one he showed me was a fake one. I have not reported that to the police but maybe I should.

 

Thank you all for the responses; they have been very helpful  :D  :D  :D  :D



#29 Joelf

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Posted 06 November 2014 - 04:21 AM

Hi Quiltfairy,

 

Quite apart from breaking the law, I think I would feel very worried being a passenger in a car where the driver had a fake/no driving license and surely this would mean that he's driving without insurance as well? I would certainly report him; he could be a danger to himself and other road users and shouldn't be driving around at all, particularly taking passengers.

 

I'm so pleased that you and your medical team have found our website and forums helpful and informative; that's what we're here for!! :emoticons-yes: 

 

Kind regards, 


Jo Frowde
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#30 Shelley Ensz

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Posted 06 November 2014 - 09:39 AM

Hi Quiltfairy,

 

I'm delighted that you are rounding up more help and support.  It sounds like everyone is pitching in with what they can, which is fantastic.

 

: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.

#31 miocean

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Posted 07 November 2014 - 06:24 AM

It is nice to hear you are getting so much support from family and your doctor seems to be doing the right things. Dealing with a disease is really frightening, especially when you don't have the answers. Prepare yourself for a roller coaster ride, because that is what it like; you will have your ups and downs. 

 

A recent example I can give you for me is that a recent pulmonary function test showed my diffusion rate had decrease by 7% down to 25 which is very low. I was very upset about this as I have been turned down for a lung transplant at 2 centers.  However, my recent Echo shows improvement and a recent spirometry at my pulmonary doctor also showed improvement. I can't figure it out and try not to get too overworked about anything these days. It's taken me a long time to understand a number is just a number and can vary for many reasons. 

 

My hair also fell out all over my body. I am very fair so it grew back but curly. The good thing about this is I was starting to get normal peach fuzz on my face, almost had a light mustache, and that is all gone now! 

 

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