diagnosed....sort of, but need some real world advice!
Posted 09 January 2011 - 02:57 AM
This is my first post on the site as I just happened to find this forum. I am having a lot of problems getting answers from doctors and I am hoping to get some real world advice from people who are actually living with it.
My symptoms started back in April of 2010; hands started swelling and and getting tighter and then in July my lower legs, knees and feet started to swell. After being passed around the medical system for 3 months a Rheumatologist told me I had Scleroderma; I researched it and it just didn't seem to fit, so after another month of waiting I got to see a Scleroderma Specialist. He said because all of my tests were negative and my skin was still very soft etc., that I had Eosinophilic Fasciitis. I might add that I am also experiencing rapid weight loss, about 1 to 2 pounds a week (and I'm not trying at all); I eat good foods, but I eat a lot of it and when I do eat, I am hungry 20 to 30 minutes later.
They have done renal and stomach ultra sounds and every other major test under the sun and everything is fine; no increase in my Thyroid Stimulating Hormone or thyroid issues, no GI tract problems...nothing. So as of now they are trying to determine the best course of treatment.
I have very little mobility in my ankles or knees and my muscles and tendons seem swollen and tight, or maybe shortened. My skin on my arms is looking weird, kind of like the outside of a golf ball (around my bicep) and it looks like I have little indented roads on my arms (tracks following the veins or tendons). I might add though, that I have absolutely NO pain. Certain foods with sugar make me swell more and things get tighter, so as of now, I take large doses of various supplements to help relieve the inflammation and swelling.
The doctor is talking about Prednisone and/or Methotrexate, but he is still at a loss to explain the weight loss and the fact that I have no pain. If anyone else has experienced similar symptoms I would love to hear from you; I am just very frustrated with the vague answers I am getting from supposed specialists.
Posted 09 January 2011 - 06:00 AM
A warm welcome to these forums!
I have Limited Systemic Scleroderma and like you had very swollen fingers and hands; however, unlike you, my joints were also very painful. I haven't experienced the skin changes that you mention on your arms, nor have I had any appreciable weight loss. (I should be so lucky!! )
I can understand a little of your frustration though, as before I was diagnosed I was desperate for answers, but I now realise that Scleroderma is notoriously difficult to diagnose correctly. Quite a few of our members have had negative blood test results and yet have many of the symptoms of this bizarre disease. It seems to be a feature of this complex illness that no two people have exactly the same symptoms. We also have an informative LINK HERE regarding eosinophilic fasciitis which I hope you will find interesting.
Regarding the medication your doctor has mentioned, I am on a similar immune suppressant to Methotrexate and also Prednisolone and in my case the drugs really helped me. However, different people get a different reaction to the same medication so it is important that your rheumatologist prescribes the exact, correct medication for your circumstances. I see that you have consulted a Scleroderma specialist; this is always a good move as many rheumatologists know very little about Sclero and therefore are not in the best position to treat this very unusual and complex illness.
Do please continue to post regularly and let us know how you are faring.
ISN Assistant Webmaster
SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager
ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)
Posted 09 January 2011 - 07:20 AM
I've just popped in to welcome you to the ISN Forums.
Jo's given you some great links. As you already know, we have to be our own advocates so time spent researching (on reliable sites) is very worth while.
I have systemic sclerosis sine scleroderma (without hardened skin), but experience the swollen joints and a feeling of tightness, especially in my legs. And, like Jo, have considerable joint pain. I also take an immune system suppressant and prednisone. The prednisone has so many side effects that most doctors are reluctant to prescribe it for long or in high doses, but in certain cases it is appropriate and helpful. The link for prednisone will take you to a page with information and links for commonly prescribed medications used to treat scleroderma and other autoimmune diseases.
I hope you'll post often and let us get to know you!
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network
Posted 09 January 2011 - 07:54 AM
Thanks to both of you for the warm welcome and the information. It is very frustrating and I can imagine it is also frustrating for the doctors trying to deal with a proper diagnosis; I just hear so many stories about people being improperly treated, that it freaks me out a bit.
I have been looking through the site and am very impressed with the information available and how everybody truly seems to care about how everybody else is doing. It's a rare thing!
Anyway, take care and yes, I will continue to post and share as things progress.
Posted 09 January 2011 - 09:05 AM
Welcome to the forums! We have information about eosinophilic fasciitis you may find helpful including personal stories from others also living with this disease.
That you have no pain is an absolute bonus and long may it continue!
Take care and keep posting.
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)