automartin

New here, no diagnosis yet. Awaiting rheumatologist's appt.

6 posts in this topic

New to this forum and the world of autoimmune diseases.

I started experiencing leg weakness/pain/tingling that I thought was related to my 5th lumbar issues (possibly sciatica) about two months ago. Gets worse when standing/walking around, I just feel weak, like I could just slither to the floor and collapse. However, I still workout and can still do squats and cardio. It's more of a sensation than an actual physical thing. Does that make sense?

I am also experiencing heavy fatigue daily. So tired. I've had a chronic low-grade fever for a month or two (99-100 degrees). Lower back pain. I also have Stage 1 endometriosis, carpal tunnel, bursitis in my shoulder. Despite all that, I'm 37 years old, female, no prescription drugs, extremely active. In December, I developed a painful/itchy rash on my face. My doctor put me on a topical steroid lotion for a couple of weeks, but it did not help. The redness is now gone, but the bumps are still there, and I occasionally (2-3x/week) break out in a hivey red rash.

I went in for my annual physical (which I scheduled mainly due to the leg pain) and my blood tests came back with these concerning results:

Elevated BUN: 19
Low GFR (kidney filtration rate): 59.4

And, most concerning, the following positive tests:

ANA
Centromere
Jo-1

TSH is normal, Rheumatoid Factor is normal

The following are also negative:

Anti-DNA
Anti-RNP
Anti-SS-A
Anti-SS-B
Anti-SM
Anti-SCL79
Histone

Any insight? Advice?

Share this post


Link to post
Share on other sites

Hi Automartin,

 

Welcome to these forums!

 

I'm sorry to hear that you're experiencing worrying symptoms, which could be attributed to Scleroderma. Please note that I have no medical training (apart from an out of date first aid certificate and a fondness for telling my doctors how to do their job ;)) but certainly fatigue and muscle weakness are some of the unpleasant manifestations of the disease, but of course can relate to any number of autoimmune conditions. Also positive blood tests do not always mean that you will develop full blown Scleroderma (or any other autoimmune disease) as it is possible to have positive antibodies and never develop any more symptoms of the disease and vice versa, as many of our members can testify.

 

I understand that you have a rheumatologist's appointment, which perhaps will help to clarify things a little for you. If it should turn out that you do indeed have Scleroderma, we do recommend that our members, if possible, consult a Scleroderma expert as this complex disease does require specialist knowledge and expertise.

 

Please let us know how you get on with your appointment.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hello Automartin

 

Welcome to the forums!

 

Please see our difficult diagnosis resources as well as our symptoms of scleroderma and diagnosis of scleroderma, all of which include short videos. Hives are not a symptom of scleroderma and although fatigue is common to scleroderma (can be crippling) it's not actually a diagnostic symptom for scleroderma because it can be caused by many other diseases.

 

Diagnosis of scleroderma is usually based on a combination of clinical history, physical examination, presentation of symptoms with blood tests playing a supporting role and they can also help to further categorize the type of scleroderma but should not be solely relied upon to provide or rule out diagnosis. It is possible to have blood work positive for scleroderma with no symptoms (now or in the future) and to have scleroderma symptoms with negative blood work. I have rapid onset diffuse systemic scleroderma but with negative ANA & SCL-70 and always have done and my rheumatoid factor is normal.

 

Symptom lead tests and biopsy can also help to determine what ails us and with scleroderma being so complex and difficult to diagnose every test helps. Unfortunately there is no one test to rule scleroderma in or out and with blood tests further muddying the water it is important to have a symptom led diagnosis preferably conducted by a scleroderma expert as already stated by Jo.

 

I have no idea whether you have scleroderma or not but either way I hope this helps and please continue to post any questions you may have as well as letting us know how you get on.

 

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)

Share this post


Link to post
Share on other sites

Hi Automartin,

 

Welcome to Sclero Forums!  I really can't add anything to what Jo and Amanda have given you, but I did want to just swing by to say hello, and welcome.

 

: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.

Share this post


Link to post
Share on other sites

Hi,

 

My diagnosis started with my primary care physician, positive ANA with symptoms....Though many women have tested positive for that and not become ill.  He referred to a rheumatologist.

 

My rheumatologist sifted through my symptoms and ran another battery of tests and started me on the correct medicines.  I might guess your next step is to get a rheumatologist, were you referred already?


Diffuse Scleroderma Diagnosed March 2009

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now