HI Rose, I think it is just a tentative diagnosis, and if you go to another doctor(s), they will diagnose you with another disease to fit the symptoms, as you have so many, At least Meibomian gland dysfunction has a better prognosis than SS any day.

You have many autoimmune diseases and active autoimmunity will attack different organs and tissues, so I would not be surprised if the Meibomian gland is affected. I think the treatment is to use lots of lubricating eye drops to protect your cornea. You know that untreated dry eyes will lead to blindness. I have poor vision and dry eyes, so I can attest to that fact. Wear sunglasses when you walk outside to avoid evaporation of tears. Oops I forgot, there are no tears, at least not the naturally produced tears.

Don't worry too much about names and diseases. There is nothing worse than stressing yourself and making you physically unwell because of it. Take care, and best wishes, Marie

Thanks. I never knew that untreated dry eyes will lead to blindness. It made sense why eyes doctors are trying to scare me because I barely doing treatment. My eyes aren't good. My eyeglasses are dark when I go outside. For inside someone bought me dark glasses because in door light is hard on my eyes but I simple don't turn on the light if it isn't dark or if I don't need them. I uses the sun light.

I am not really worrying about names and diseases but in knowing and understanding it helps me to push forward. Marie in my childhood my health was neglected that I promised myself that when I became an adult I will take care of myself and do whatever I can to make sure I get the right kind of medical helo. I want to do the best for me and asking questions etc helps. I hope you understand?

I cannot tolerate strong light especially sunlight that has UV because my skin reacts to it, and the glare makes it impossible for me to see. Putting on lubricating eye drops will improve the clarity of my vision.

I really appreciate that you are sharing your symptoms, because through our sharings, we can help each other to look after ourselves. I think that you have the right attitude in wanting to learn about your illness and cooperating with your doctors to get the best treatment. Kudos to you and keep up the spirit!

Hi Marie
That is why I keep posting. The support has been helping me. Yesterday I was dignosed with Scleroderma which left my health suggoate speechless after she read on it. I had to encouraged her that it will be okay and faith not fear. My rhematolgist is currently doing research for both SS and Scleroderma. WHere I am and her office they have links and most of their patients are or have autiumme which I feel good that I have her and my PCP who is in the same office and are family. I sometimes thinks at you and others I have met in time of deep pain and tell myself you guys have been therer and still propelling forward so there is hope no matter how long it takes. I really do not want to go back to work BUT I do not know how to handle work stress and people. This is the same reason why my neurologist pulled me out of work and not to return BECAUSE it affected my health big time

Hi Rose, it is tough to be diagnosed with Scleroderma, that is, to have hardening and tightening of the skin and connective tissues that your fingers and toes become warped. Do you have these symptoms? Sometimes, raynaud syndrome makes the hands and feet become red but do not make fingers and toes curl? With these autoimmune diseases, in my experience, the diagnoses change every few years when more symptoms appear to affirm/change the diagnosis. Don't worry too much and stress yourself out. Stress ramps up the immune system, and we don't want this.

Twenty years ago, one of my earlier rheumy had advised me that I might have leukemia. Right! I ran up the Hematology Professor's office and told him that my life was over unless he did something about it. The Hematologist ordered a blood test, and took the blood results to my rheumy to reprimand him. So the cancer disappeared after that. My first rheumy was a fruitcake so I fired him because otherwise, he would diagnose me with a terminal disease.. He caused me pain and trauma for the entire day until I whined to my hematologist. For that entire day, I was working out who to give my toys to in case I flew off to heaven. Cannot find a good doctor these days!

Don't despair. Things will improve in the future. Have hope. Don't be a vessel for your disease. You are still in command of your body, so make a commitment to yourself to recover.

As long as the sun shines and the sky is blue, there is boundless hope and miracles for us all. God is watching over us; all you need is to ask earnestly for His blessing. Take care, and God bless.

Hi
My fingers in my right hand feel glued together but my left hand has a cast. Since 2019 I have been telling myself that I will live and not die and will declare the works of the Lord.

 I wish to impact the disable world by turning it upside down and my heart is for the deaf culture.  My faith keeps me going and wanting to impact others.
What you said about God is watching over me. I have been hearing it for the last 19 years and that He is with me. My thing is who can I impact for Him through what I endure. 

Marie having friends like you helps me along with my faith to keep propelling forwards. How are you doing? How is work?

Marie look what I found. What do you think? I was watching a click from the website and I google exercise and I saw this

https://sclerodermanews.com/2017/08/03/scleroderma-broke-me-3-different-times/?cn-reloaded=1

Hi Rose, I am sorry I've missed your replies. I think that life is what you make of it. I know your fears of dying, of suffering the inevitable but death is not always the endpoint of the disease. There are quite a few effective immunosuppressants out there that slow down the progression of the disease so that you would have a better outcome at the end.

I know that >20 yrs ago when I was just been diagnosed with lupus, I was told that my prognosis would be poor because other patients had lived only 5 years after diagnosis. However, I received treatment early and so managed to control flaring to minimise the effects of the disease on other organs. Twenty years on and touch wood, the disease affects my thyroid, joints and eyes.

The severity of autoimmune diseases seem to be connected with high estrogen. My rheumy tells me that AI diseases seem to wane after a woman reaches menopause. Perhaps the scleroderma will not progress in your case as I note that you are approaching the big change. Perhaps your schleroderma will not involve the major organs after all.

Think positive. If you are preoccupied with a disease then you will become a mere vessel for your disease, and you will not be able to enjoy your life. Take care, Marie

Good day Marie
I have been and should have said that. My first few days were crazy but I started to think positive. I have good news. I had to do a chest and lungs test to see if affected and thank God it isn't.

I have attended support group and educating self and you are right. I am 49 years old. I think I am going through menopause but in 2019 I was test and told no. They said its my immune. Now I am 49 I think I am. I am not preoccupied with it because I have been doing a few things minis the pain and fatigue. I have a lot going on minis my health and doing my best with what I have. I am not enjoying life because of my health its the other things that I have to deal with.

If I don't educate myself about the illness I will not know how to and what to do. I don't know about you but where I am it is not easy to find a good doctor and most people just put up with it or quit. I decided to educate myself and at times it is asking individuals for help and advice. In my world where I am we call it fighting back to live. No one had never to!d me that I am thinking about my health too much. Instead they praised me that I am doing a good job with taking care of my health. Anyways have a good day