New here, have been reading many of the past posts and learning a lot. I have not yet been officially diagnosed with Sjogren's but I am guessing that may be coming soon. I started having symptoms of tingling/numbness in my hands/arms about 5 months ago, and it quickly moved into my face. Those symptoms have been continuous, although they vary in intensity. Now I have intermittent tingling/numbness/burning in my feet as well. No pain or swelling (so far), but stiffness in hands & lots of fatigue. Mild dry eyes & mild dry mouth. Have had a normal brain MRI and normal EMG tests in both arms. Neurologist says "maybe" to small fiber neuropathy but feels like I would have more pain. She is willing to prescribe gabapentin but I am not ready to go there yet.
Am scheduled to see an opthomologist in April. Have seen a rheumatologist twice but she was terrible. :( I have a follow up with a different doc in that same local practice in 2 weeks and I am also looking into going to the Sjogrens Clinic at Mass General (I live about 2 hrs from Boston). That may not happen for several months though.
My only abnormal lab test so far is rheumatoid factor--which is quite high at 113 (normal should be <14). SED & ANA tests were negative, as were tests for SSA/SSB. C-reactive protein tests & cyclic citrullinated peptide were also normal. I find it so odd that I am having all these weird symptoms but that they can't find signs of inflammation. Anyone with a similar experience? thanks--Katy
Hi KatyB!
Welcome to the forum. I think you will find lots of good information and suggestions here.
In my case, I have had lots of weird symptoms, but no signs of inflammation either. No rheumatoid factor, no CRP, SED rate, etc. And I have had paresthesia and neuropathy. Fortunately (or unfortunately, whichever way you want to look at it) I had a positive SSA which got me a Sjogren's diagnosis relatively quickly. I was tested multiple places for SFN, including at a neuropathy clinic in NYC, and at the Sjogren's Clinic at Johns Hopkins, but results were always negative. My lip biopsy, parotid gland scans were also negative. As was saliva test. Eyes borderline dry (6). But I was forced out of work for 6 months! So the tests don't always tell the story. It was helpful to me to keep a symptom diary because they can wax and wane and change over time. And remember that rheumatic diseases are very complex.
The good news is I was able to return to work last fall. I am on Plaquenil and have done Rituxan twice. The Rituxan really helped with the neuropathy the first time I did it - it was two infusions two weeks apart last August. I had a repeat single infusion in February. I have had some tingling return and quite a lot of body aches at this point. I'm not sure why that is - I have been in touch with my rheumatologist.
Also, my eyes were mildly dry too and on the advice of the forum members I started Restasis to try to prevent further damage. My ophthalmologist was willing to do that, so ask about that. I don't worry so much about the blood tests anymore - I focus totally on the symptoms. I did try Lyrica for the SFN - hated it. And it didn't really do anything. This is so much trial and error. You are on the right track going to a specialty clinic - don't stop until you have some answers. We live in these bodies - I think we know when there's something wrong! Take care and good luck!
Anastasia.
Welcome KatyB!
I have never tested positive for ANA, SS-A/B, or ESR. The closest my blood work has come to SS is a borderline RF test and some low CBC levels. However, I have symptoms that are very much in line with a SS diagnosis, including most of the symptoms you mentioned
Positive RF is very common for SS patients, and roughly 30% of SS patients have negative SS-A/SS-B (the real number is likely higher). I wouldn't read too much into your blood work at this point. Focus on finding a good rheumatologist who will listen to you and work to improve your quality of life. With a positive RF test and dry eyes, you should be able to get prescriptions for Plaquenil and Restasis. Because there is no FDA-approved treatment for SS right now, a firm diagnosis will not necessarily open additional treatment options. If you want to pursue it further, you can look into a minor salivary gland (lip) biopsy. Just be aware that nerve damage can result, so you want a very experienced ENT/oral surgeon and pathologist if you go that route.
Many of us have our own treatment protocols using supplements, diet, lifestyle changes, and alternative therapies. You can see mine in my signature. You may want to explore some alternative treatments while you wait for the slow gears of the medical establishment to turn.
Katy .....
I do have positive ANA and SS-A and my lip biopsy is positive. However, my inflammatory markers are always fine. Even when I am in major autoimmune flares, my inflammatory markers are always fine. I do have sensory polyneuropathy/ganglionopathy and small fiber neuropathy.
The blood markers that are commonly used to monitor Autoimmune Diseases are not reliable to measure disease activity in Sjogren's. There are some blood tests that are more specific to Sjogren's but they are not commonly drawn.
If you have not had a lip biopsy, I would suggest getting one done. Many people have negative blood work but have a positive lip biopsy.
I would suggest getting an appt. at the Sjogren's Clinic at Mass General. You will most likely get much better care there than if you keep trying other Rheumatologists.
I would also suggest getting an appt. at the Mass General Hospital Nerve Unit. Dr. Anne Louise Oaklander is the director and she specializes in small finer neuropathy. You should be able to get an appt. with someone in her clinic. I have seen two of her presentations and read some of her articles and she is an expert. She also does research. It looks like she is not accepting new patients but the clinic is. It sounds like you do have small fiber neuropathy. Most likely her clinic will do a skin biopsy to determine if you do have small fiber neuropathy. (EMGs will not show small fiber neuropathy. MRIs may not show small fiber neuropathy either. Not all small fiber neuropathy is extremely painful. "Not enoulgh pain" does not rule out small fiber neuropathy.)
http://neuropathycommons.org/
http://neuropathycommons.org/
https://www.youtube.com/watch?v=guS6PATRh7E&feature=youtu.be&t=1m17s
I hope you can find some competent doctors to help you.
Thanks all! I have learned so much in the past 6 months but I still feel so isolated & overwhelmed much of the time. I appreciate hearing about your experiences and ideas. This week I am feeling particularly fatigued and anxious about the future. :( (I have good supports, am seeing a counselor, and am taking yoga classes and doing other self-care....but still, some days managing the anxiety is difficult.)
Jasper, I hadn't even thought to look for PN resources at Mass General; thanks so much! I am just in the process of getting records faxed to the Sjogren's clinic but I am going to reach out to see if they can also hook me up with someone from the Nerve Unit. My local rheumatologist seemed to know nothing about the relationship between PN & autoimmune disorders, and my local neurologist--while very kind and helpful--did not seem to have many options for me.
Katy ..... You may want to wait to get a lip biopsy until you are seen at the Sjogren's Clinic at Mass General. Or, perhaps they could set ypu up with a specialist at Mass General for the lip biopsy. The reason I say this is because you need to have an experienced doctor do the lip biopsy (someone who does hundreds of them) or the lip biopsy may be done incorrectly and not enough salivary glands removed in order to determine if you have Sjogren's. In addition, the specimen must be handled correctly (special formula) and the pathologist interpreting the specimen needs to be experienced in interpreting salivary gland biopsies. If they screw up on any of those steps, the lip biopsy will be useless.
Thanks Jasper. I have just put in requests to have all my records faxed to MGH, and will wait to have lip biopsy and possible SFN punch biopsies done there. I also met a local woman yesterday who has had Sjogren's for 15 years and she had great things to say about the team at MGH. I will now hope that they can get
me in fairly soon....