Hi Rose, it seems that you are in the early stage of diagnosis, but that you have found a good rheumy to investigate further. Twenty years ago, many doctors could not figure out why I was crashing, so I checked myself into hospital, and booked myself into a hospital immunology clinic. I stayed with them for 2 years, and they performed many investigations to confirm that I had/have lupus. Once the diagnosis was established, no matter what other organs were involved in the autoimmune attack down the track, aggressive treatment of lupus flaring reversed the injuries in the other organs.

My treatment team 20 years ago included 2 hematologist professors, 2 immunologist professors, 2 ENTs, 2 neurologist professors, 3 ophthalmologists, 1 nephrologist professor, 3 rheumatologists, 1 rehabilitation physician, 1 endocrinologist professor and countless allied health professionals (physiotherapists, orthoptist). Twenty years later, the only organs affected by the lupus are the muscles, thyroid and glands..

What reasons did your doctor give to explain your brain shrinkage? Do you have Alzheimers or dementia? Did you have a stroke or traumatic brain injury? Has your rheumatologist ever suspected of multiple sclerosis?

Don't ever give up, and don't settle for a diagnosis that you feel is not right. Seek a second or third opinion until you come up with a diagnosis and treatment. Don't lose faith and hope. There is a bright light at the end of the tunnel. I foresee that you will find treatment and your autoimmune conditions will stabilise. Take care my friend :) Marie

Andromeda8
Hi
You mentioned that your eye doctor recommended punctal plugs for your dry eyes. I just had them inserted a month ago. The procedure was fast and painless, however I do not see any improvement. My eyes are not more watery, still very dry. The procedure does not make more tears, or watery eyes when they are very dry to start with. No drops have helped me either. My eyes are sore and painful every day. I do not feel the plugs at all, would never know I had them inserted. Just thought I would pass this info on to you if you were wondering if you should have it done. :)

Hi Bluebird, I really appreciate the extra info on the punctal plugs. The fact that the plugs do not make any difference in terms of preventing tears drainage means that you have to use eye drops regardless, so that its use is pointless really.

I have tried many eye drops in the market, and the best I have found so far is the drops with carmellose sodium in it. Alternatively, I use Thera Tears but this brand is not available in my state, so I have to buy it through eBay or Amazon. Just apply the drops as often as possible when your eyes feel dry.

I also take approx 2grams of fish oil which supposedly improves the oil film on the surface of the eyes and prevent tears evaporation, therefore improving dry eye symptoms.

https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-fish-oil-supplements-and-dry-eyes/

If you have other tips on improving SS symptoms, please write us a post so that we can try and improve our lives. Thank you so much, and take care :) Marie

Hi
I had an very weird rhematologist visit. Rhematologist asked me to bring in my medical folder but did not look at it. Then show stated that my blood test inflammation. Than she said it shows autioumme and that it is sjorgen. SHe said my brain been affected, lungs etc is autiommune . She spoke about stress and diet. She gave me a paper on sjorgen which only spoke about dry eyes and mouth (which is confusing because paper does not say much). I feel like she does not fully know sjorgen and when I asked questions which I did she then said autiuoiumme and not sjorgen. It is kinda if I have autiumme which one cause my body to do that. Yet she speak about SS as eyes and mouth only. I was confused so I asked questions.

She thinks I was asking why do I have autioumme BUT I was asking is the other issues that I have it is coming from sjoregn, SHe gave me one meds and said she is going to write it down but never did (she wanted me to asked my eye doctor.. She said it will help with the joint pain etc. I waiting her respond to what is the name of meds. I have a questions, she did not give me a follow up visit. Does that means I do not need to see a rhematologist? I know that her and my PCP share the same office. BUT this all new to me. I feel lost

Good thing that happens is that I get to see a nutritionist even though I eat healthy. already because of GI issues, Now I do not know, I have to learn how to say NO and rest. She said it can be control but can progress but it can be maintain. My only concern is that I have meniere's and synope and what do I do with these two

Someone from the sjorgen foundation just spoke to me and recommend that I get a second opinion. I am going to. Something does that not add up. There is a doctor on the foundation which is local and in my area

HI Rose, I agree with you that your new rheumy sounds so confused. Perhaps you can call her office and obtain the prescription to treat the SS/joint pain as she had promised, and ask about the follow up visit. Ask your PCP to follow this up. This is the problem when you are seeing doctors in the same centre. You have spent an awful lot of money seeing physicians who are uncertain of diagnosis, or know what they are doing. Can you access a reputable immunology/rheumatology clinic in a university hospital? The hospital would be more equipped to detect autoimmune diseases. The Sjogrens foundation can recommend you to a good rheumatologist. If you suspect lupus, contact the Lupus foundation of America for recommendations of doctors.

Good day Andromeda
Thanks. I emailed her and she gave me a follow up. I spoke to someone at Sjorgren foundation who is the head of support group in my area. She encouraged me to get a second opinion and she gave me a immunology/rheumatology. The good news is that my insurance will allow me to see this new doctor before the end of July without a referral from PCP. I was concerned if my PCP will give me a referral to get a second opinion since his sister he refer me to me.

I emailed current rhematologist about meds and also reached out to my eye doctor and now I have three different eye doctors to see. To be honest I am praying that it will all work out. There is one doctor I am praying that she will get on board my insurance because I need a good PCP. Doctors send patient to their freinds or family member BUT to me that it does not show that the patient best interest is in mind. This is what puzzling me. I at times feels like where are the good doctors?

Hi Rose, I think that your insurance is great in allowing you to see a new rheumy/immunologist without needing a referral from the PCP. You are right about having a good PCP who has your best interests at heart.

I had a former PCP who was not only uncooperative to other physicians who were treating me, but made up ludicrous diagnosis when she had no idea how to treat me. She acted like a clown and dressed like a clown. I stayed with her for 5 years because my Mom had told me to trust her, but eventually I gave up on her when she refused to refill the prescriptions for my lupus meds. After my autoimmune conditions were diagnosed, my physicians took over care and I had little to do with the PCP except to obtain renewed referrals, or to obtain treatment for minor ailments, which I treated myself most of the time anyway.

I hope that you will find a good doctor(s) on your quest for treatment. Not all doctors are equal, as you have found, but most of the good ones are connected to a university hospital. Once you have found a doctor who is attentive to your needs, stay with him/her and don't change until the good doctor expires or retires. I was with my former rheumy for 8 years until he retired 2 years ago.

Your current PCP just wants to raise income for his/her friends and families through the internal referrals. It's just a human thing, profits before human relations. You are on the right path; don't get discouraged. Keep on searching for the answers until you obtain the correct diagnosis and treatment. Best wishes, and take care.

Thank you for speaking to me the way you do. I needed it. Sometimes I am discouraged to keep trying. It is so weird you said what you did because a friend said the same thing to me yesterday. She had to drop Doctor and keep pressing until she got the right diagnosed and now getting help.

Since last July til now I have seen 4 so I am on my fourth one. He is not bad. I really wanted to pick my own rhemotogist though. Someone who knows both him and is sister told me today to stay with her and give her a chance. The person said the rhemotogist is good and she needs time to know what is wrong with me. I agree with her. But my question is do I have time and a door is open now.

I wanted to say I am always tired. Most time I am and not motivated. Concerns about what I feel in my body. Been physical doesn't help or getting active doesn't help. The more I rest I get a little better but once I start getting active I go back ward

Hi Rose, there is nothing wrong to take up the opportunity to have a second/third/fourth opinion from another impartial rheumatologist. You don't have to leave your current rheumy, because you are entitled to have a second opinion from another physician.

I think you are fatigued because you have not been receiving adequate immunosuppressants when your blood tests are showing active autoimmunity and increased inflammation. That is, you are flaring and all of this stress is exacerbating the flare. Exercise does help the pain even though it does not seem so at the beginning. When you exercise, i.e just a short walk in your case, your body releases endorphins which take away the pain. Exercise will keep your body (muscles/bones) conditioned and fit, and allow your body to strengthen. You need to keep fit and eat adequate nutrients and proteins to fight off infections, especially during this COVID pandemic.

Everything seem overwhelming at the beginning of diagnosis, but you will learn to adjust and tweak your meds to accommodate for the changes in your body. Take care, and best wishes, Marie

My cardologist asked me to be careful exericising because it triggers the fainting. In 2014 I was told to stop exercising because i was getting sick and sicker and each time I start an exercise routine become sick. IT was noted that this happens and put me at danger, This is why a second opinon is needed because no matter what I do I get sick, Resting helps but than I am back to myself and I try to do and than get sick, I try and stop and try and stop, I did VR/PT and pass out after the 5th session and was discharged. I was told that the discharged was to save my life because something is going on. Most people do not pass out BUT I did,

I do eat health (I am a Fobmap, GF, No sugar, no dairy, low salt diet) If I do not keep it I get a lot of pain, I do keep it. Because my eating is limited at times others laugh after me. Few learn from me. I feel like there is a never ending thing for me where I am trying and still get sicker,

I called new rhematologist who is an immune specialist ) Sjorgen foundation recommend him. He has no opening until Sept. That was discouraging that I did not make an appointment. I will be seen my current rhematologist within six weeks from last week. I could call back on Fri to see if I get a better chance

HI Rose, you have too many allergies so this would be a good time to see an immunologist in those allergy clinic. I was diagnosed with lupus by a renown immunologist in an allergy clinic who initiated treatment for lupus.

From your description, the autoimmunity seems to spread to your autonomic nerve to cause perhaps a condition called autonomic neuropathy, which causes dizziness and fainting due to sudden drop in blood pressure, exercise intolerance, difficulty in digestion, among others.

https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/symptoms-causes/syc-20369829

From your writing, your active autoimmune flaring has attacked your glands (lacrimal and salivary glands), heart, lungs, brain, autonomic nerve, muscles, joints...... Are there any more organs involved? Do you think you may benefit by checking yourself into a hospital clinic instead, where there are multiple teams to look after you, to diagnose and treat? It seems that you need to be treated aggressively by immunosuppressants. I have many friends who have checked themselves into the immunology department of the Mayo Clinic.

With the immune specialist whom you want to see desperately, just tell the receptionist that your autoimmune conditions have attacked your heart, lungs, brain, autonomic nerve, muscles, glands etc..., that is the autoimmunity has attacked multiple organs, and that you need urgent medical treatment. Otherwise, with the wait till September, it will be too late and by that time, you would need to be hospitalised. Receptionists screen patients, and sometimes you have to tell them how very sick you are in order to secure an earlier appointment. Tell them that you are bed bound and unable to exercise due to effects on the brain and heart, and that your blood tests have proven acute autoimmune flaring. Perhaps then, you can secure an earlier appointment to see the doctor. Good luck, and best wishes, Marie

Hi Marie
I emailed them, I google Mayo clinic there is not one in my area. I am in FL and the one in FL is miles away, I do not think I can go there, I can look tomorrow to see if I have hospital clinic near where I live.If I do what do I say if I go to the ER? I am clueless