Hi my name is Colleen. I am almost 70 and struggling with many symptoms of Sjogren’s from dry eyes, very very dry mouth and throat, trouble swallowing, breathing problems, extreme fatigue and weakness and neuropath along with joint pain +++ My Ent doctor scoped me and was sure I had Sjogren’s because I was so very dry but blood work just came back negative. Anyone else have this happen and how long did it take to get a diagnosis finally, if ever?
Hi Colleen! I’m sorry that you’ve got so many symptoms. I’m sero-negative as well. . … I took a quick look and approx 50% of people with Sjogren’s test negative. A lot of the treatment is symptomatic, but with the level of issues that you’re having it’s worth talking with your doctor to see if you might be a candidate for systemic treatment.
It’s pretty typical for people to use lubricating eye drops, possibly drops such as Restasis or Xiidra, and maybe even tear duct plugs. For the swallowing and breathing problems, there is a medication that can help. Actually, there’s two different meds, evoxac and pilocarpine. Some people find that one is tolerable and the other isn’t. I’ve been using evoxac for many many years, and have been very happy with it. If I don’t take my evening dose I can’t sleep
If you’re not already seeing a rheumatologist I would strongly encourage you to see one, and you may need a neurologist too, but sometimes the rheumatologist can handle all aspects.
Thanks so much, Stoney for answering and the suggestions and encouragement! I don’t have a rheumatologist yet but saw a neuromuscular neurologist in Feb and was diagnosed with neuropathy from an EMG I had then and they also say I have signs of Parkinsonism but I think that is mostly from the extreme weakness and fatigue I have causing severe tremors, balance problems etc. The dry mouth and throat and trouble swallowing was occasional in the last year but for the last 2 months is constant and I sit up most nights in a lift chair as I am so short of breath and have trouble swallowing even saliva that I can’t lie down and breathe. Pretty frightening and exhausting. I will speak to my family doctor this week about a referral to the rheumatologist. It was the ENT doctor he sent me to for the swallowing and choking problems who thought it might be Sjogren’s. Thanks so much answering! How are you doing?
Recovering from a busy weekend, right into a busy week.
I see that you have a cat companion? We have three, plus we foster cats.
I love doing it, but it definitely keeps me busy. This is two out of my three. Elsa is the naked cat in the fleece, and Sissy is solid black and loves to snuggle under the covers.
Thanks for sharing. I love cats so much. Especially the ginger or orange ones. I hope you have recovered from your busy week and start a new and good one as serenely as you can.
Very discouraged. Just spent 9 days in hospital with breathing problems and weakness and doctor was completely dismissive of doing anymore testing for Sjogren’s because her exact words were “Who cares? There is no treatment for it.” Home now, gasping when I do anything and in so much pain that I can’t do anything. I feel like I am going crazy.
I wonder if you need to seek a second opinion, maybe at a University center. In terms of Sjogren’s being treatable. . . . There certainly are meds that can help with the symptoms, and in severe cases, disease modifying meds that can be tried.
I’m also wondering if you were poo pooed a bit because of the breathing problems. Clearly that needs to be the primary focus, at least at the moment. But if you were sent home with no management for the breathing issues, it sounds like that needs to be dealt with to help you feel a bit better. You must feel awful.
Thanks Stoney. I think the breathing problems are from the progressive weakness going on. They always try to blame it on my heart failure and dilated cardiomyopathy but it never turns out to be that in the end. One doctor in Emergency wanted to do more investigations but my doctor on the floor was totally dismissive. That is a good idea to get another opinion and I will see what my family doctor can do. I do feel awful. So hard not to have any real answers or treatment. Thanks so much for listening.
Also, while your family doctor may not have the expertise, they can be a wonderful partner for you. They can be the first stop for you to figure out what direction to go, make initial contacts, etc. They are also looking at the whole picture and not just parts.
He told me i had enough problems already to explain why I am struggling to breathe and walk even a step with cardiomyopathy and heart failure and that there is no point looking anymore. He is putting in a palliative care consult but I haven’t quite given up hope.
I am continuing to struggle. It has been 18 months of problems. I don’t know how you all do this day in and day out. I called the neurologist today and got my appointment moved up because of not doing well. I don’t know why my family doctor has given up but I haven’t.
Maybe I need to clarify something. The palliative care consult is for my cardiomyopathy and heart failure, not the signs and symptoms of Sjogren’s but it is not what you might think. I have had idiopathic dilated cardiomyopathy and heart failure for 14 years. It doesn’t mean I am dying from that which would be hospice care but it is meant for symptom relief of my pain and breathing problems etc. I am just sad that I am struggling with almost every symptom of systemic Sjogren’s and he doesn’t want to pursue that as I think some treatment for that would improve my quality of life.
I’m sure you’re right, that some management of your Sjogren’s would improve your quality of life. Have you spelled it out this way to your doctor?
Thanks so much, Stoney! I haven’t yet put it that way but will. How are you doing?