Hi everybody. I was recently diagnosed with Sjogren's. I was told 16 years ago that I had MS and have been treated for it using some harsh drugs. I was resigned to it and just trying to do my best to coexist with the disease. About a year ago, I started getting dry mouth, dry eyes, repeated thrush and pink eye, so I did some research and asked for a blood test for Sjogren's. It came back positive. Now the question is do I also have MS, Sjogren's, or Sjogren's with central nervous system involvement. I didn't realize that the tests to prove MS were not definitive and that the symptoms of MS can mimic Sjogren's. Has anyone else had this experience? My doctors say it is impossible to know, but I feel it is is important to know whether or not I have MS because the treatments are very different. Immune modulators or immune suppressant? The choices are not pleasant or easy on your body. I also don't know how agressive I should be treating Sjogren's. I would like to be conservative and watch my symptoms, but I know things can be going on that are not obvious, but bad. Advice?
Hi Jackie,
Welcome to Sjogren's World! :) I hope you find great info. and friendly and helpful people here.
So, sounds like you have a complicated question...and that's ok, of course. I personally don't know a huge amount about MS other than there are some similar symptoms. I understand your concern about which way to turn in regard to treatment; which condition to treat in what way?
May I ask, do you see a neurologist or other doc regularly in regard to your MS diagnosis? I would be frustrated if I were you and my docs told me it's impossible to know if your problems are MS or Sjogren's or perhaps both. I apologize I don't have good advice for this right now.
I'll try to reseach a bit, and I am sure someone else will post who has some better info. for you. Meanwhile, please keep us posted and I will look forward to hearing from you again. Again, welcome and feel free to ask anything. We'll try to be of as much help as possible. ;)
Take care,
Melinda
Hi Jackie - welcome.
I don't have any answers about the MS/Sjogren's overlap possibility, but here is a link to a previous discussion about that. https://sjogrensworld.org/index.php?topic=8652.0
I put MS into the search box at the top left of this page - unfortunately, it went to all previous threads that had ms in the thread, which came up with a bunch of threads that had "ms" in the word, example, . . . symptoms. You can do the same and scroll through and you might find something . . . I only looked at page one of the posts, there were 8 pages.
It would be a shame if you endured some harsh treatments to treat MS if you do indeed have Sjogren's instead. Sjogren's seems to be a huge puzzle that baffles the doctors.
I hope you find this site helpful to you in your Sjogren's journey.
Bucky
One way to see if it is MS is have a lumbar for CSF to be tested for certain antibodies. Also MRI to see the white spots on the brain and where they are located. (all around the ventricles of the brain) Also testing of your coordination and etc. I know because I am going through that now. The treatment I guess will depend on what symptom is worse.
Hi Jackie :)
Welcome to Sjogren's world. I think your question is one for your neurologist. I'm afraid we are not doctors in here. I completely understand you wanting to know what you are dealing with.
This site was set up by women who had been mistakenly dxd with MS. Unfortuneately it is also possible to have bothe conditions so you need an expert to sort it out.
Take care - Scottie :)
Welcome Jackie.
Your doctors will have to sort out what you have. There are things that you can do help yourself manage your symptoms. One that helps me every night is wearing a polar fleece "mumps" scarf to bed. My 6-8 oz of carrot juice every day also helps. Find what works for you.
Welcome Jackie
As Scottie says, the two wonderful women who started SjS World were both initially diagnosed with MS. That was my experience too - I've written the details on my staff page if you want to know more. In my case it was a lumbar puncture and MRIs that indicated it probably wasn't MS, as dainbramage suggests.
You're asking exactly the right questions. It's so hard to know which label belongs to which condition, and whether it makes a difference. Daily life with neuro symptoms is probably the same whatever the symptoms, but in my experience there is much less support available for SjS-with-central-nervous-system-involvement than for MS.
As you say, it's the choice between immune modulators and immunosuppressants that's the really important one. Plus specific meds for SjS, like Plaquenil.
The best thing is to find a neurologist who has experience of both conditions, and maybe also a rheumatologist. If you'd like to PM me to discuss this in more detail please do.
Take care - Chickpea
Thank you for all the warm welcomes to this forum. I read the information recommended and it was insightful. I will try to respond to your questions.
From what I have seen, I agree that there is much less support for SjS of any type in comparison to MS. There is also less funding and research, even though more people suffer from it, from what I can tell. I wonder why? I was tested for MS because I went blind in one eye. Optic neuritis is a common first symptom. I had a spinal tap, MRI, and some other tests. All pointed to MS, so I started seeing a neurologist. I was never told it could be anything else, so I assumed I had the right diagnosis. I see a neurologist at least twice a year. For about 12 years I had injections of Avonex, which is an interferon and an immune modulator. I was hesitant to go on the drug because it is expensive, the side effects are unpleasant, and there is no way to know if it works, but decided to do it because my sons were still young and I wanted to try something. I also worked a lot of hours as a manager and wanted to continue doing so. I have had a few other relapses over the years, but most resolved themselves completely or at least mostly. Before symptoms of Sjogren's turned up, my main issues were neuropathy in my feet, some difficulty walking (I use a cane part of the time), anxiety, and fatigue. Now I am seeing a neurologist and a rheumatologist and they are both frustrated. They are not comfortable going outside their specialty. So, I don't know if it is possible to get a definitive answer. I might have to live with it. The treatments are the issue since they are different. For Sjogren's I am taking Plaquenil, Restasis and other drops for my eyes, and a lozenge to prevent yeast infections in my mouth. It helps. I also use special OTC mouth preparations. For MS I am taking a few pills I might stop taking. My doctors need to help work it out, but I don't know if they have the answers. In the meantime, I persevere and am doing my own research! Have a great Presidents' Day holiday.
Hi everyone, this is my first time on here and reading some of your posts, I could be reading about myself!!.
I have been seeing a neurologist and a rheumatologist for years now and neither could decide on a diagnosis, I was told probable MS then Connective Tissue Disease and more recently SJogren's with neurological manifestations, I was prescribed Plaquenil but stopped because it was making no difference, baclofen for muscle spasms and stiffness and Ibuprofen for pain, my main difficulty is walking, which has gradually got worse over the last year or so, do the symptoms come and go, does anyone find any particular drugs or diet / exercise helps?
I would appreciate any tips or advice to help me cope a bit better with this condition.
Thanks :)
Welcome MaryMax.
Welcome Marymax
I'm glad you found us, and finally read about people just like you. We're a friendly crowd with SjS symptoms across the range. Some people have the dryness issues really severely, while others have mainly neuro problems - and some people have a bit of everything. Fatigue and a good sense of humour are shared by us all.
Have you been seeing neuro-physiotherapists for help with walking? It's too easy to develop an odd way of walking which compensates for neuro issues, and then find that you've affected the muscles in your lower back. They can also help with the correct way of walking with a walking stick/cane, walking frames etc. It takes a while to accept that you need support when walking. For me it came down to wanting to salvage every bit of independence I could: I went from stick to walker, to manual and then powered wheelchair.
I'm sorry Plaquenil didn't help. It can take months to show any results, and when the condition is degenerative it's hard to believe that it's making any difference. I've stuck with it and with Prednisolone. A year after diagnosis I started CellCept, an immunosuppressant, which a few of us here are on. Other people have had success with similar meds like Cytoxan (cyclophosphamide). You need to find a neuro or rheumy with experience of these meds, and of SjS-with-central-nervous-system-involvement.
Does Ibruprofen provide sufficient pain relief? That's something many people here can help with if you want to ask. There are higher dose anti inflammatories, and other pain meds. Other people have had good results with diet and exercise programmes and I'm sure they'll come along soon with suggestions.
Thinking of you - Chickpea