I'm new and have some questions about scleroderma. I'm currently diagnosed with secondary sjogrens and have bad scoliosis, always elevated ANA with speckled pattern, positive for anti-cardiolipin antibodies, vitiligo and hyperpigmentation, diabetes,removed salivary glands and lymph nodes in neck, lots of scarring, calcifying lymph nodes, inflamed lacrimal glands, stiff muscles, thick skin, polyendocrin dysfunction incl. hashis hypo, and Non alcoholic steatohepatitis, neck surgery for canal stenosis, spondylitis, degeneration, general joint problems, abnormal emgs, mild heart atrophy.
I am going through the mayo thing and the rheumatologist is saying I have connective tissue disease, but he also noticed I can't straighten my pinkies. I thought the swollen feeling was from edema, but it is not, it is hard, like the underlying tissues have atrophied. My arm muscles are hard and painful as are my legs. I notice this is moving on to my ring fingers within a week.
Funny thing is that as awful as I feel right now, my complements and ANA is relatively low at 1:40 and my sed rate and CRP are low for once. My platelets have been borderline low repeatedly though and maybe that is way, I don't know.
My emgs have shown increased repetitive potentials-- the nerves keep telling the muscles to contract even though they are stiff. I'm still pretty flexible.
I seem to have elements of rheumatoid arthritis, scleroderma type changes, muscular/nerve problems, and sjogrens so I don't know what will happen. They believe it is too early to tell what kind of disease I have yet.
One factor is that I was mistakenly treated with alphainterferon--an immune system BOOSTER-- for my liver when I had autoimmune disease, this caused my autoimmune disease to be worse. I had a horrible time on it and lost my reproductive organs and it destroyed my endocrine system even worse than it ever was and it hurt my liver.
1. When I try to straighten the pinkies, and I can't all the way, my hand tremors back and forth from pinky to thumb and it is frightening. Is this something that is like scleroderma hand changes? Both hands are curling under and the ring fingers are doing it too and the middle fingers are going crooked I can't straighten them on one side and the other side is getting bad. No heat or pain, I didn't even notice they were that bad.
2. Do you have to pass all the blood work for scleroderma, or are there people who don't have all the antibodies but still may have it. I test negative for SSa SSb antidsDNA but always have elevated ana speckled.
3. The rheumatologist is looking at Rituxan for me. Would this make scleroderma worse?
4. Are pigment changes part of scleroderma?
5. I have been diagnosed with a lower esophageal ring and when my last submandibular salivary glands and lymph nodes were removed, the surgeon said there was an extraordinary amount of scar tissue and mentioned scleroderma.
Can they make a mistake and misdiagnose the changes in the esophagus as a lower esophageal ring?
6. Should I seriously discuss scleroderma with my doctors and get tested?
7. Can the damage be prevented or will it run it's course regardless.
8. does scleroderma hurt the lymph nodes, liver, nerves, and muscles? Pain and heat in knees, one at a time, and shoulders and wrists one at a time. Stiffness in spine, can't stand up?
Thanks for any help you can give me. I know no one here can diagnose me, I just wonder if others share some of my same symptoms and if I may be developing scleroderma or scleroderma type symptoms.
I'm worried I'm going to end up in a wheel chair if they don't slow this down. I don't want to take the wrong meds or neglect something. My hands worry me because I type. Any help would be greatly appreciated.
If anyone has pigment changes along with scleroderma, I would be interested, because the doctors at Mayo seemed to be well aware of my cluster of symptoms and about the pigment changes and how they occurred bilaterally in the joints, and seem to know about prognosis, though they seem to have no name for the condition. I would like to know if it is common with scleroderma. Also, my skin is thick and shiny on my shins and hands, putting in ivs is difficult.
Thanks for any help and I wish you all the best.