Hi Rose, I am so glad to hear that your PCP has diagnosed you with SS, but that the rheumatologist will need to do some more testing to confirm this tentative diagnosis. At least now, you are on the right path to getting proper treatment for your SS. I pray that God will heal your body, and help you to recover from this condition. Best wishes, and take care.

Thanks

Andromeda,
My new rhematologist appointment on Fri was scary and interesting. Interesting because she is very supportive. What puzzled me is that she gave me a paper on SS and it only had sym as dry eyes and mouth (Yet i spoke to the person who is over SS support group in my area and she is a doctor also . But she gave me more info and stated that what I am going through could be SS and other autiomunne combine. I told her that I was seen a new rhematologist)..

However my new rhematologist did a lot of blood works that will take two weeks for her to have them, And she took so many x-ray that my body hurts and I became fatigue. She stated that she is not going to stop until she find out what is going with me (one doctor said that but stopped after his first blood test became negative). I hope this doctor does not do the same. Good news is that she is going to talk to my former rhematologist because they know each other.

Sad and scary news is. I did a bunch of x-ray and doctor stated that my spine that is all the way up in my head are has degenerative disc and it does not look good and that I need to be careful of doing any surgery because i can become paralyzed. SHe also said that my chiropractor needs to be very careful when adjusting me because one wrong move i will be paralyzed. SHe is concerned about my lower neck area, my fingers and my knees BUT stated that she cannot fully say what is going on until she sees blood test and take a look of everything and gets some more history on me. SHe however gave me something for dry eyes but my phamarcy is been a bone head and now they are going to call my PCP.

I am holding on because it took me this far for my doctors even to come to here they are now that two weeks is nothing. My rhematologist sending me to my neurologist because she cannot treat my upper next disease. SHe gave me CD to give to my neurologist. I go see her in 2 weeks and her brother who is my PCP in five weeks. She and I spoke for a long while and she said she will answer my questions when she knows more.

I came home feeling scared to move etc. Plus drained. SHe did not give any meds nor pain meds and said in 2 weeks because she wants to know with what she is dealing with before she can do treatment. Which is fair.

Hi rose, I am so glad to hear that your new rheumy is being careful and withholding diagnosis until the results for the investigations and tests have come through. I tend to agree with your rheumy that the dry mouth and dry eyes are symptoms that can be shared by other autoimmune conditions, but you have tested positive before to CARBONIC ANHYDRASE VI (CA VI) IGM ANTIBODIES* and PAROTID SPECIFIC PROTEIN (PSP) IGM ANTIBODIES, so there is a high chance that you may have SS. Perhaps that you may have lupus like me and that your autoimmune antibodies are attacking all organs including salivary glands and lacrimal glands to cause dry mouth and dry eyes. We can only wait for the results, but that having dry mouth and eyes are the least worrying conditions compared to damage to the major organs.

With the dry eyes, one of my ophthalmologists has proposed to insert a punctal plug in my tear ducts to block tear drainage so that I would not have dry eyes. The thought of having watery eyes all the time, and the irritation of having a foreign body inserted in my eyes, have steered me away from such solution. I am using a lubricant eye drops instead (e.g Thera tears), which I can apply at any time. With the dry mouth, you can use the Biotene oral balance gel or chew gum to stimulate saliva release but with constant chewing, your stomach acid is also released which may cause reflux or predispose you to stomach ulcer when there is no food in the stomach to counteract the acidity.

People with autoimmune disease also gets osteoporosis, especially in the spinal area. My previous rheumy prescribed hyaluronic acid + Calcium +Vit D tablet, but it did not agree with me ( stomach irritation), but it may work for you. Otherwise there are drug treatments such as biphosphonate, monoclonal antibodies, HRT or bone building medications. Or that you can help yourself by eating food/drinking supplements containing phytoestrogens. Your endocrinologist can treat your osteoporosis/ osteoarthritis problem, and the local pharmacist can give you guidance on the supplements.

It is good that your rheumy is sending you to the neurologist to see you about your cervical spine problem. I tend to agree with her about the dangers of spinal manipulation by a chiropractor. Severing spinal nerve and death are the few scenarios come to mind. In my state, a chiropractor was struck off when he severed the carotid arteries of the patient during a cervical spine manipulation.

I can understand your anxiety on waiting for the results. You can view the whole situation this way: we have more than one autoimmune diseases so an extra condition with "mild" symptoms would not worsen the overall clinical picture. Take care my friend, and don't be afraid. Just wait and see how things unfold. Best wishes, Marie

Thanks you so much for saying what you just said. She my rhemotogist gave me restasis for my eyes. My eye Doctor gave me what you spoke about but my rhemotogist asked me a few questions and sent to Pharmacy. I did a muscle boy in 2010 to see if I have lupus etc but came back normal. I know that I have gotten worse since than. For dry mouth I drink water. Sometimes swallow is not good but it could be worse. I don't like the chocking but it is not Daily.

I think that's why she is Concerns because my organs are affected. With my spine and joint she paused and say in two weeks I will know more. I have both IBS and colitis. My rhemotogist asked me to tell my chiropractor but stated it is okay to see him. I will speak to chiropractor next month and see what happens and decide.

No I am not anxious but a bit scared when she told me what she said but then said she will know more. She recommended Paraffin for my fingers. I am in the early stages and make sense because my joints started to hurt last May til now on and off. But my lower and upper neck for years now. Thanks for your advice. I feel blessed because it has been a Journey and even though my former Neurologist and PCP had stated that I have a long Journey ahead of me back in 2018. I am more positive than before because of the doors open and now. Thanks Marie.

No problem Rose, I am glad that I can help. Take care :)

Good morning
I just got an email about my blood test. What comes out high is: Complement Component, Rheumatoid factor (IGM), creatine kinase total, sed rate by modified West degrees, vitamin B 12,' and corrective protein.

My ESA's Nd See b and Job1 antibody are normal but that is why former rhemotogist did the early Sjorgen blood test.

Nor am curious what could be going on. In 2019 my B 12 was higher and I saw a cancer specialist and he said its not cancer but autoimmune. It finally went to normal and now high again. I am praying that God gives my rhemotogist wisdom and knowledge to know that is going on what me. I go next week to see rhemotogist

Hi Rose, I am glad to hear that your blood results have come out. I wonder if the "corrective protein" you have mentioned means C-reactive protein, which elevates when your body has inflammation. Basically, all those high levels indicate that you are flaring, and that you are currently have active inflammation in your body. The B12 is not only a marker for cancer, but it is also an inflammatory marker.

You must be in a lot of pain at the moment. Perhaps your PCP can help you by prescribing analgesics and/or NSAIDS.

Twenty years ago, my autoimmune symptoms caused my doctors to think I had cancer, but things be, it turned out to be lupus after all. I was glad that I had the lesser evil, but now in retrospect, no disease is better off than another. No matter what happens, I take courage and move on with my life because we are individuals with specific skills and talents, that diseases cannot define or defile us.

Take care, and don't worry too much. Stress will cause autoimmune flaring.

I forgot to add that elevation of IgM and inflammatory markers may also indicate a recent infection, viral or bacterial cause. Do you have an infection at the moment?

That it is I do not have an infection and I have so many tests that shows that I do not.
Yes it is the C-reactive Protein. Most of these have been the same thing and that is why my former rhematololisgst stated something is going one. My inflammation is have been a problem for a very lo g time. I am thinking it is lupus, I do not know why. Even the weakness etc I think it is BUT it is hard to explain. I am long term care and just to know what is happening will be a blessing. I am not able to work and had to stop since 2018. I know in 2015 that I would not work for long. I am I always in pain and sometimes it get to me. Sometimes it feels like my bone hurt BUT I have not felt it for a very long time. I want to beat whatever is happening BUT not known how do I? I am now 49 years old and I keep telling myself that I have a future. I thank God that He gave me doctors who are willing to fight back for me. I need to do this.

My rhematologist gave me an eye drop that start with R and I had a bad reaction. My body is not taken any new meds also

Hi
I was obtaining my old medical record from my former rhematologist online and saw this "Need eval for inflammatory myopathies." i google what Inflammatory myopathies is. I emailed results to New rhemogistist and printed it to show her. I have inflammation and get weak at times. If i have it makes sense why it goes and comes. It is a slow progressive.

It would be a blessing to know

I can understand the pain you are under at the moment. During my early days of diagnosis, I was not given treatment so I would have muscle and bone pain all the time. I became so debilitated and bed-ridden that I could not work or study for a while. Then treatment was prescribed, the bone pain was much attenuated and I regained mobility and strength to work and study. I am pretty much the same vintage as you, and I persist despite the difficulties to continue my studies and work, so I can foresee that one day you will be able to do the same.

My ophthalmologist once offered Restasis eye drops but I refused after reading about the side effects.

With autoimmune diseases, your immunologist/rheumy would need to revise the condition every couple of years. The disease may progress or retard, or that the diagnosis may change because what the docs have thought initially may not be the right disease, since more symptoms developing over time would suggest another condition. I have myalgia which causes muscle pain. Once I developed rhabdomyolosis in reaction to a medication which causes muscle pain and weakness.

It would be a relief for you to receive a proper diagnosis. The wait is horrendous and nerve racking but at least at the end, you will receive an accurate diagnosis and treatment. Keep the faith, and take care of yourself! Good luck my friend.

Hi.
Are you still working with all of that? You stated that you develop rhabdomyolosis that's why I asked?

You are Strong!!!! I have a fainting issues that I get triggers under stress in any way. Been home and taking breaks to rest is very helpful to keep this under control. It is a form of syncope and I was told that I should never have both it and menieres.

I would not wish these two of illnesses on anyone even my enemies. Doctors can't treat both because treatment for one affects the other. One doctor told me it is a God business when I asked her why do I have both? My cardiologist said medically I can't have both. I am okay just wanting to push forward in a different way.

I keep hearing doctors say I am too young. At first I was sad but then I told myself I am going to live. I am. I can feel the different in my body from 2018 til now. I can feel the changes.

Hi Rose, the rhabdomyolosis disappeared when I stopped taking the offending medications.

Ten years ago, I had syncope episodes and it was thought that I had Menieres. I kept fainting; I could not keep my balance when I moved my head; I felt that I was walking on a cloud because I could not feel my feet. My neurologist could not explain it, and advised me to wait and see. Then my former rheumy came along and prescribed high doses of corticosteroids and Plaquenil, and the syncope episodes/imbalance issues went away. It was thought then that the lupus was attacking my brain, and prescribing high doses of immunosuppressants seemed to suppress the inflammation. Afterwards, I could get out of bed to work and to attend classes. It was horrendous times, and stress was the trigger.

Are you sure you don't have lupus? Your symptoms indicate that your autoimmune system is attacking several organs at once. Once it affects the brain, the treatment must be rigorous otherwise brain function is compromised.

Hi
That's why my rhemotogist is Concerns, from 2017 there was a Concerns why is my body going after itself. My current rhemotogist said she is not going to stop until she finds the reason. I don't know. I was told in 2012 System going to crash up to 2016. For me it happened in 2018! Why? No one ever answered me. I keep hearing medically I am a challenge. A friend of mine said that it seems like my doctors are just making me comfortable. She is a nurse. She said my health is complete. But most of my doctors say the same thing. In 2018 I was told that my brain is shrinking. I feel like I am losing when it comes to my brain because I fogets. It is the weirdest thing to explain. I was told that I don't have a system. I am the only one fighting for me. My body hurts 100% that's why I am awake