Jump to content


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


Photo

Positive ANA and possible symptoms?


  • Please log in to reply
8 replies to this topic

#1 Marchr

Marchr

    Newbie

  • Members
  • Pip
  • 4 posts

Posted 24 March 2015 - 04:47 PM

Hi Everyone, 

 

I apologize if this question's been asked before or if I'm posting in the wrong place. I've read through quite a few forums here, but I still have so many concerns and questions for my mom's health.

 

She recently received her blood results indicating a positive Antiscleroderma-70 Antibodies (1.7). She also had a high BUN/Creatine ratio, low creatine levels, increased thyroid activity, and low specific gravity. 

 

This just came out of nowhere. For the past 6 months, her complaints about her finger and neck pain have increased quite a bit. She wakes up every morning with her fingers in a curled/claw-like position. However, she does have complete mobility immediately afterwards. She also feels her fingers and toes are extremely cold at times and it seems like the cold is embedded in her bones, at times. But she does not seem to have any discoloration during these "episodes." Her fingers don't go white or blue (thankfully). In addition, they don't become stiff or swollen. 

 

She does not show any changes in her skin. She has these two calloused-feeling bumps on her finger tips which seem like they have some fluid inside it. But the fluid color does not seem white, seems mostly clear. 

 

She has suffered from acid reflux for a while now. But this may have been due to H. Pylori infections. A few months ago, her acid reflux has come back and her test results show no H. Pylori infection. 

 

We've scheduled her for the next available appointment for the rheumatologist. However, these past few days have been a nightmare. I can't stop thinking about this, I can only imagine what it's like for her.

 

I just want some feedback from others based on your experience with the early stages of this disease. Anyone with sclerodactyly experience the curling fingers at the onset of the symptoms? Do cold fingers/toes count as Raynaud's disease if there's no color change? Does acid reflux occur at an early stage or does that usually come later on? Is her 1.7 antibody count significant enough to be diagnosed, the lab cut off was 0.9. I just can't imagine something like this could happen. She's healthy (for the most part one day) and then this comes along? Does it really get as bad for most people with diffuse scleroderma? Right now, she feels like this disease will be the end of her. I would really love your feedback on your experience when your symptoms all began and how they have progressed so far. When did the skin and finger stiffening take place? I would love any sort of input from anyone. 

 

Thank you for reading through all this. I look forward to hearing from you all. 



#2 Shelley Ensz

Shelley Ensz

    Root Administrator

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

Posted 24 March 2015 - 06:10 PM

Hi Marchr,

 

Welcome to Sclero Forums. I'm sorry you have concerns about your mother having possible scleroderma. I need to run right now so I can't answer all your questions, but many here will pitch in to try to help. My thoughts are with you and your mom.

 

: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.

#3 Joelf

Joelf

    Star Ruby Member

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

Posted 25 March 2015 - 07:11 AM

Hi Marchr,

Welcome to these forums!

I'm sorry to hear that your mother has worrying symptoms, which could possibly be Scleroderma. I can understand how anxious you must be feeling and not knowing is the very worst part of it.

Unfortunately the symptoms for Scleroderma are very varied and because they tend to affect everyone differently it does make this a very difficult disease to diagnose.Another problem is that having positive antibodies does not necessarily mean that your mother will develop the full grown disease and the reverse is also true.

I have Limited Scleroderma and in the beginning my symptoms were rather vague; I just felt generally unwell and poorly. Thankfully, I don't have Sclerodactyly, but my fingers were very swollen and stiff; I'd also suffered with Raynaud's for quite a while before any other symptoms became apparent.Obviously, I can't predict whether your mother's symptoms will worsen, but in my own case, Scleroderma was certainly not the end of everything! Rather it's opened up new avenues for me, which I would never have considered had I not contracted it.

We do recommend that our members, if possible, consult a Scleroderma expert as this complex disease does require specialist knowledge and expertise. I've also included a link to our Medical Pages to give you some more information.

Now that you've found our forums and joined our community, you will find a lot of help and support, whatever the outcome of your mother's tests.

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)


#4 Marchr

Marchr

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 4 posts

Posted 25 March 2015 - 02:14 PM

Thank you Shelley and Jo, I appreciate your input!

 

She's scheduled to visit a rheumatologist on Wednesday, I'm hoping a lot of worries will be put to rest. We've done so much research together and some on her own about the signs and symptoms, I feel she's psyching herself out. I made a detailed list of symptoms when we first discussed, but now she seems to be recognizing more based on what she's read.

 

I haven't had much luck researching what tests they run exactly for the diagnosis. I'm assuming they'll run another blood test and read something about a pulmonary test with something else involving examination of the fingertip capillaries under a microscope. How conclusive are these tests? 

 

Also, as for the progression (or lack thereof, hopefully), how have you guys managed it? Is there a lot of drug therapy or did things begin to dwindle on their own after 3-5 years (apparently this happens to most people...).

 

I hope I'm not asking too many questions!



#5 judyt

judyt

    Gold Member

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

Posted 25 March 2015 - 06:11 PM

Hi Marchr,

 

Just to put the case for the other side of the story, which probably won't help you at all much :emoticon-dont-know: but I have had Limited Scleroderma at least since I was 22 and probably long before that.   Now I am 71 and still pegging along.

 

For me, the first thing was a gastric episode and that was when I was a child, no reason was given, just one of those things thay said.   Then when I was 22 Raynaud's started and continued for 45 or so years then just as suddenly disappeared.   I didn't have any skin involvement at all but all the while the disease was working along inside me.   Now I have complete involvement of my Alimentary canal from throat to the other end, but still no skin involvement except for a little Sclerodactyly which is hardly noticeable and certainly no curling of fingers.

 

As Jo has said, this is a very difficult disease to diagnose and all my life I got the shrugged shoulders and just on of those things responses.   So I have had very slow onset which is very very different from other people.   That is the thing that is most noticeable, we are all different - a rare bunch of birds with vastly different symptoms.

 

My Scl-70 is negative and always has been, but there is no question in anybody's mind these days that I have Systemic Sclerosis.

 

Carry on with your investigations, it is important to do what you can to help your Mother, but try not to worry, it doesn't help and can actually make things worse.

The symptoms can be treated in various ways and each and every one of use here will be on a different medication regime to everybody else.   What is important is to do things that help with what is happening.

 

Best wishes

Judyt



#6 Marchr

Marchr

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 4 posts

Posted 26 March 2015 - 08:00 AM

Thank you for your story, Judy. It's amazing that you went for so long with such limited involvement of the disease. I hope you've been able to control the latest progression though. I also remember reading that the younger you are at diagnosis, the better off your chances. My mom just turned 50, so I don't know if age is on her side. 

 

I guess this fear the of the unknown is the worst part because of all the different courses of the disease. At this point, I'm just worried that regardless of the doctor's actual diagnosis, the disease is still within her. I can't wait until her appointment for some answers. 



#7 Joelf

Joelf

    Star Ruby Member

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

Posted 26 March 2015 - 12:41 PM

Hi Marchr,

One of the more difficult things about Scleroderma is that it varies so much from person to person and affects everyone differently.

In my own case my lungs were affected, which had the bonus of being treated very rapidly, so I obtained a good result. So although lung involvement is quite serious, it did mean that I had some concrete symptoms, which did make it easier to diagnose. The tests I had related to lung function and the other test you mentioned is Nailfold Capillaroscopy. These tests are used in conjunction with clinical symptoms to help form a diagnosis.

I do have to take a cocktail of drugs to keep things under control, but I've been fortunate that my lungs have stabilised, so in my case the disease has not worsened ( I've been diagnosed for five and a half years, although I was probably feeling rough for at least eighteen months before that.) However, some of our members have not been so fortunate and the disease has not abated after a few years; this what I mean about everyone being affected differently.

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)


#8 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 26 March 2015 - 02:51 PM

Hello Marchr

 

Welcome and sorry your Mum is ill. I have Raynaud's, albeit mild and my hands do not change colour. My worst symptom when my extremities are cold is cramp because of the Raynaud's. Before I knew the cause of it I used to tape my fingers together to try and stop it, now I know better!

 

I have Sclerodactyly it's my hands in the video. My early symptoms were swelling, pins and needles and years prior, pain in my hands when typing. I never woke up with claw like hands, in fact the beginning of sclerodactyly for me was ruler straight hands and fingers. The tight skin covered my arms and hands fixing my wrist and finger joins immobile so nothing would bend, at all! I couldn't even rotate my hands round to have the palms facing my face. Eventually the tight skin caused finger contractures and over the fingers went. Actually it is much easier to do anything with fingers curled than completely straight, who'd have thought it!

 

My symptoms came on within 6 months but I have rapid onset diffuse and not everyone is this quick! I do not have and never have had positive blood work for scleroderma. Symptoms of scleroderma can come on at any stage, I developed reflux a few years in whereas for others it's a diagnostic symptom. 

 

It's not a pleasant disease, I wouldn't recommend it but then I don't know of any disease anyone would! What I do know is that you can carve out a good quality of life. It ain't easy but family support really helps and your mother clearly has that.

 

"or did things begin to dwindle on their own after 3-5 years (apparently this happens to most people" 

 

Yeah, I have debated this with my rheumatologist before because I have NEVER met or heard of anyone with systemic scleroderma who has this experience. I actually think it's bunkum but that is just my opinion. 7 years in and I still await this plateau, as they call it, but I have to acknowledge that scleroderma can wax and wane of its own accord. As for it dwindling without treatment, that refers to the localised types of the disease as far as I am aware. Localised scleroderma does not affect internal organs and is never life threatening.

 

Finally seeing a scleroderma expert is always our recommendation, this disease is just too complex to chance to rheumatologists who have no experience of it.

 

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)

#9 Marchr

Marchr

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 4 posts

Posted 26 March 2015 - 04:18 PM

Thank you Jo, I'm glad to hear you've got things under control for the most part. It seems to give me hope hearing experiences such as your's. 

 

Hi Amanda, thanks for your input. I have to say, watching your videos on Youtube are very informative. It's nice to have this as resource, before diving heavily into the research and scientific journals. I also read about your experience on the Personal Stories section. My heart goes out to you with all that you've had to deal with. But it's amazing with what you have accomplished and kept so strong given the circumstances.

 

One question I still have though, how was your Raynaud's diagnosed without the color changes, through the nail fold test perhaps? My mom and I tested our fingers against the air vent in the freezer section of the fridge, and both our hands stayed the same color. Although she reached her threshold for the cold way before I did. She mentioned her fingers felt numb at a point where I barely felt anything. 

 

I have to say, this past week seems all too much like an out of body experience. I could have never imagined any of this. I hope we don't have to wait too long for results on Wednesday and the diagnosis will let us put this nightmare behind us.