First Rhuem Appointment

[Calgarygirl]

Hi Everyone,

This is my first post, and I'm writing from Canada. I'm wondering if anyone has any advice or information that could help me. At the beginning of December I was tested for autoimmune diseases and came back with positive Ana (speckled pattern) and Scl-70. I was only screened because I'm tired all the time (which has probably been ongoing for the past 8 years) and I had low back pain. I have no skin involvement, no Reynaud's, and I swollen joints. I'm 36. I have had GERD for the past month and have been on PPI's which has helped a lot. I've also found that I have developed an alcohol intolerance.

I was wondering if these were anyone else's initial symptoms? I have felt worse since I got the blood tests back, but I feel like that might be my extreme anxiety.

Also, I have my first Rhuem consult next week where they will try to figure out a diagnosis and check my other symptoms. I'm wondering if anyone could help me out with what to expect. I'm a bit nervous and scared for it.

Thank you. I'm so glad this community exists, this has been a very scary time for me.

[LucyJean]

Hi there, I think it is normal to be nervous and scared, especially when you are in that difficult 'limbo' period between worsening of symptoms...vague diagnosis and no official confirmation or treatment plan. Hold on until you see the Rheumatologist and then they will be able to review all the investigations that you have had and hopefully clarify what is going on and the treatment options.

Scleroderma come with two main categories...limited and diffuse...and a range of different symptoms. Everyone has their own pattern of symptoms within this range, despite the commonalities, so I wouldn't worry about what is typical of scleroderma and just be concerned with what is typical for you.

The Scl-70 marker is usually associated with Diffuse Scleroderma. Your digestive issues are likely to be linked to the condition. Fatigue definitely comes with the territory and pretty much everyone gets that. it is symptomatic of your immune system becoming more active.

Have a look at the SRUK website, and go to your appointment with a notebook that has all the questions you want answered, and is somewhere that you can make a note of anything that is important during the appointment. I would take someone with you...two heads are usually better than one (although that does depend on the person you take It can be difficult to take everything that is said in when you are anxious.

Don't go online and scare yourself silly with all the information that is out there. Only look at reputable sites (which are scary enough). Remember, that everyone is different and just because you have scleroderma does not mean you will get all the symptoms on offer.

Hope that helps a bit.

All my best

Lucy xxxx

[Calgarygirl in reply to LucyJean]

Hi Lucy,

Thank you for your feedback. It is very helpful. As for the worsening of any symptoms, I would mostly connect them to the anxiety and mental health problems I have right now. Most of the time I feel good. I eat well and get lots of exercise. The GERD is the main thing that is concerning me right now, but my doctor said she isn't even sure it's that. Autoimmune diseases seem very difficult to understand, and diagnose because of the variability!

Again, thank you for your help.

[perle333]

You need a wheelchair and a wheelchair accessible vehicle. This type of thing requires steps. Inquire about the correct wheelchair at a medical store.

[tanya1981]

Hello Calgarygirl and welcome to this forum! You will find it full of valuable advice and genuinely nice people who want to help.

I’m sorry you’ve had to “get the scleroderma news” - it is ever so frightening in the beginning indeed ! Don’t get fooled with reading too much on the internet and imagining how you will get to experience all the terrible symptoms out there. Having followed his forum from more than 2 yrs, it is clear that all of us get to see bits and pieces from the disease on an on and off basis. Try to take your mind off the endless possibilities - meditation? Massages? Sports?

I do hope what you’re going through will

Only scratch the surface of this nasty disease. As to the visit and what to expect - a lot of it would centre around a

Conversation about you, your symptoms,

Your habits , etc

Good luck and keep us posted

Tanya

[Calgarygirl in reply to tanya1981]

Thanks Tanya, I appreciate the thoughtful response. After talking to my doctor and my friend who an internist, they have both told me that it's not uncommon for people to test positive for the antibodies and to never develop the disease. I'm hopeful for that, but also want to be realistic. My symptoms now are really just exhaustion and low back pain, which could be from anything. Continuing medical investigation is definitely the right way to go though. I'm hoping for the best but am prepared to hear anything.

[Hidden]

Hello fellow calgarian! My first rhumy was LECleric. Do not go into the research program. Didn't know what scleroderma was and the questionnaire was traumatizing for me. For me it was saying look at what's going to happen to you. That was over 7 years ago and mine is progressing slowly. But at the time it felt like within a year all of this will happen and really very little has. Personality clash with DR LeCleric didn't help and I did change Dr. I see Dr Arbagilla now who I can relate to. We learn to live with it and with few adjustments it has not changed my life. Life has actually improved because priorities and outlook on life changed. It turned out to be the best thing to happen to me.

Mother Teresa said God doesn't give me anything I can't handle but sometimes I wish he didn't trust me so much. These things help us grow kinder more compasionate.

Keep me posted.