I have been having symptoms for about 18 month to two years as far as i am aware!!!
It began with very dry sore eyes, i was diagnosed by an opthomologist as having chronic dry eye.
Then i developed a very dry mouth. I have been to dental hospitol twice. The first time they said it looked like sjogrens and the second time said it wasnt???
I have had bloods taken at the docs and they say no to ss as my bloods are ok.
I have since developed burning and tingling in hands and feet. Sometimes i feel very fatigued and ache all over as if i have flu and joints feel stiff.
I went to rhumatloigy and they said no to ss because of bloods. I havnt had a lip biopsy yet but am going to ask for one.
Have now got to get a mri next week as experiencing muscle twitches and dizziness.
I am absolutely terrified that i have ms. My dads bro and sis had it. My uncle died of it. My dads other sis has fibromyalgia. Am obviously hoping its fibro or ss???????
Am dealing with my anxiety by taking prozac and diazepan.
Hi, Trott. If you're new here, then welcome. If not, then welcome back.
From what you say, you're doing everything possible to get to the bottom of your symptoms. I agree you should press to get a lip biopsy, which I understand is by far the best way to diagnose sjogrens. I don't think blood work alone is definitive.
Also, yes, you should have the MRIs. Please read the many helpful articles in our health Pages about MRIs to assist you in asking questions when you next see your neuro.
Has fibromyalgia been ruled out for you? And lupus? MS doesn't usually cause all over aching and pain. I would wonder whether you have more than one illness going on.
The best we can do for you here is give you support. There's plenty of that here! Please let us know as you get further tests. Also make sure you have copies of all medical reports, from the beginning of your symptoms. Your situation is very complicated, and you need to line up your ducks. This saves time too if you see a new doctor.
I am relatively new to the forum and posted the exact same question to Dr. Kantor. He thinks it is posbble but unlikely to have both. I have since been sent for a 3rd opinion to an academic hospital. I have upcoming appt. with a new rheumy since my previous treated for sjorgen's with negative blood work but symptoms. Never did lip biopsy. New neuro is also sending me for SSEP testing due to the parathesias and weaknes, etc among other things.
My advice is have the biopsy and continue to pursue both paths. My MRIs have lesions but there are conflicting opinions between the 3 neuros whether the lesions are MS, Sjogrens' , migraines or BP related.
Good luck and hang in there! You can pm me if you'd like to talk some more. I understand the anxiety and the worst part,.... not knowing.
I've been having a work-up for Sjogren's, and had doctor's dismiss the possibility because of my blood tests, but at least 30% of people with Sjogren's have negative bloodwork, SS-A and SS-B. I'll be seeing a rheumatologist March 16, and will come armed with knowledge and lots of records.
I've done a lot of reading, and about 50% of Sjogren's patients have another auto-immune disorder, though it seems that MS and SS is a rare combination. If your current rheumatologist is unwilling to send you for a lip biopsy, you might consider looking for another rheumatologist that is used to working with auto-immune disorders of all types, and that realizes that sero-negative does not mean negative for SS.
I had my MS neuro refer me to a rheumatologist, specifically asking for someone that her clinic sends patients to that seem to have a different auto immune disorder. There are several, and I would prefer a doctor that understands and hopefully has a working knowledge of most of them.
I think a lip biopsy is a good idea, though people on the Sjogren's World forum have mixed feelings about them. There are also some good articles on that forum about Sjogren's, if you care to read more. I was amazed at how many different symptoms can be attributed to SS other than my dry eyes, mouth, sinuses, and a few other places.
The lip biopsy is supposed to be the most definitive test for Sjogren's . I'm prepared to have one, as I would like to either have a diagnosis, or rule one more thing out.
I'm also pursuing the possibility of MS, because of symptoms and a lot of lesions in my brain, some of which are in areas where MS lesions are normally found. There are just so many that all three of my neuros have thought I have small vessel ischemic disease, although I have no predisposing factors.
I had a neuro-ophthalmologist tell me that my brain lesions remind him of those that he had seen in a Sjogren's patient that he had seen.
Keep looking for answers; I'm right here on the search with you.
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