I have been following this board for awhile but decided to join to offer some comments and ask some questions.
A "brief" bit about me:
Was active in walking and water aerobics until Dec 2005. I began having terrible joint pain after walking a short distance. GP did blood tests which showed High ANA and DS DNA. He said he thought I had lupus. 9 months later... I had more symptoms including a rash mostly on my arms that lasted 4 months. Rash was biopsied by Mayo Clinic and they said I had a "connective tissue disease". Rheumy dx'd Lupus. 3 months later I had severe dry mouth and was dx'd with sjogren's. This was confirmed by additional blood tests positive SS-A and SS-B. Dumped that Rheumy (he was terrible for a number of reasons). Found new dr that prescribed generic Plaquanil and antidepressant. (depression and serious fatigue major problem for me). About the same time I begged my GP to test my thyroid again. Sure enough... I had Hashimoto's disease. Began seeing an Endo. Jan 2008 developed pulsatile tinnitus. (I hear my blood swishing in my right ear to the beat of my heart). ENT did MRI's CAT scan etc. Couldn't find anything and finally said it might be from my autoimmune diseases and there was nothing more he could do for me. Nov 2008 began having neuropathy in my right foot. Was sent to a neurologist. He suggested that perhaps my current Rheumy was not treating me aggressively enough and that perhaps I should find a new one. (problem is... I discovered.... there are no good Rheumy's in this town that know Sjogren's). He found some neurological problems in my lower back and so ordered an MRI of brain and spine. In the mean time..... I began noticing my "brain fog" problems.
MRI showed "multiple white matter lesions" none of which were there on my MRI a year ago. I then went for a spinal tap. High protein levels but no bands showing MS. Went for PET scan. Showed atrophy and less activity in my right brain than my left. Went for Cognitive testing.... showed some problems with attention, concentration and memory.
Now I'm waiting to see the Neuro again.
My current Rheumy did blood tests in Feb this year at my request. After the results of those tests, he says that he doesn't think I have Lupus but instead I'm primary Sjogren's. I asked if there was any change in treatment he could recommend and he said "no". I asked if my brain lesions could be caused from Sjogren's and he said no. (of course I know they can be.... he just isn't informed). He is not a dr that can be questioned or challenged so I do need to find another dr.
Question 1: Has anyone gone to Mayo or a major hospital for evaluation? If I did that I would have to go out of state and pay out of network health fees which I don't have the money for right now. Just wondering if I should save up for that.
Question 2: I think many (most) of us have "brain fog" and neurological problems with Sjogren's. Has anyone else here had white matter lesions? My biggest fear is that I will get more of them and it will affect my cognitive abilities. I really don't want more. This is what my cognitive issues remind me of: The video/movie is running (my mind is rolling along) and suddenly it is like someone has taken a clip or piece of the video and pressed delete. I just loose track of what I was thinking, doing, etc. I can know I have to go somewhere and 1 minute later drive by the place I need to go to. It makes for lots of U turns. Luckily they are legal here.
Question 3: What other treatment might work or be tried that is more "aggressive"? Anyone taking something else that really works?
Question 4: anyone else have tinnitus? I believe this can be a side effect of Plaquanil.
Question 5: anyone take meds to improve memory or cognitive stuff?
OK.... so I had other questions but I can't remember what they were so I guess I'll post when I remember. I thought of carrying around a tape recorder to record things so I can remember them but I'm afraid by the time I found the recorder and turned it on, I wouldn't remember what I needed to record.
Thanks for your comments.
Nice to know we have support in cyberspace.
Hi Lindar,
Welcome to the group!
I was diagnosed a year ago and am not an expert on Sjogren's Syndrome but I think if you are going to save up for a good doctor you should shoot for Dr. Julius Birnbaum at John's Hopkins in Baltimore. He is an expert on your exact issues and would be worth contacting. He has a thread on this site offering to help any of us with Neuro issues from Sjogrens.
http://www.hopkinsmedicine.org/neurology_neurosurgery/experts/team_member_profile/D2AE1BB5C0D4684E9A70D7329318EBD0/Julius_Birnbaum (http://www.hopkinsmedicine.org/neurology_neurosurgery/experts/team_member_profile/D2AE1BB5C0D4684E9A70D7329318EBD0/Julius_Birnbaum)
I'm not sure the Mayo has the very best thinkers for Sjogren's. I could be wrong but I think Rheumatic disease is not their specialty.
Best to you!
Janna
Welcome aboard Lindar.. So sorry to read of your numerous trials ! I can't give any advice , but that which Janna gave sounds good to me...
Keep chipping away at the puzzle tho' some day someone will crack it... we all live in hope!
Wish you well, Dolly. x
Thank you both for your support and the suggestion to see Dr. Julius Birnbaum at John's Hopkins in Baltimore. I was very excited reading his bio. Since I don't have any experience with going to anyone but my local docs.... how do I go about making an apt with this doctor? Would I need a referral? Does someone like this see a patient or would I be on a wait list? I really wouldn't have a problem going there. I guess I would need to find out the cost first. Unfortunately as a retired teacher my pension doesn't support large medical costs but if I can find a way, I'd love to see someone that actually knew what they were doing.
Thanks again!
Lindar, If you put the Doctors name @ John Hopkins Baltimore into Google, you will no doubt get some advice .. Sorry, but I am in UK so cannot really comment further ... Good Luck , Dolly x
Hi Lindar,
I am very new to this site (first post) but felt compelled to share my experience. I am awaiting confirmation of my sjogren's, but all signs are pointing that direction. The frustration has been that a year ago I went to my doctor due to numbness in my right leg. He ordered MRI and bloodwork. I never hear back from him (as he went on vacation), regarding the bloodwork but was told (by the urse) I had an abnormal MRI (lesions on brain and spine).
A neurologist quickly diangosed me with Multiple Sclerosis, pending a spinal tap (too rule out cancer, etc.). I started the agressive treatments for MS, accepting my dx as true, then began to have side effects from treatment and sought a second opinion at Mayo in Scotsdale, with MS specialist. He blew off my dry eyes, nose, and mouth as side effects from meds and then confirmed by dx of MS. If he had looked at past records he should have seen the need to refer me to a Reumy. BTW, I also have swollen glands that have been blown off by doctors (now concerned about lymphoma of course another thing). Last summer I couldn't walk any faster than a snail or I would loose control of my right leg (tingle and go completely numb). I have a lot of joint pain in hands and knees, but blew it off as old age (37). :)
Then, when I met with a cardiologist (back in Kansas), for an additional health issue (PFO, hole in my heart) he mentioned to me that from old records from Dr. #1 that I had elevated SSA ('sjogren's antibodies'). I have had to educate and advocate for myself around ruling out sjogrens vs MS. I had to find a Reumy on my own, and she has not been very helpful to say the least and basically she will not diagnose me without a lip biopsy (schedule for next week that she was not help in arranging). Even though I have confirmed dry eye, mouth, nose and antibodies.
I really and just trying to advocate for myself and get the answers that all these doctors and specialiest are trying to skirt. Much of it I am sure is lack of understanding of the disease, but a lot of it is dysfunction in our medical system (in my experience) and too many specialists brushing off that which has nothing to do with their speciality. So in terms of Mayo -- I would research their website and understand of sjogren's, but you can just call and make your own appointment with not referral. I am interested in the dr. at John's Hopkins, once I get a dx I may go for a second opinion (I am big on 2nd and even 3rd opinions). There are good doctors out there, but it is a challenge to identify them. But I have found one has to be their own advocate to get the care and answers they need. Exhausting as it is .. we can experience the bumps along with way with others who care too.
Hello Lindar and Agreenchance, I'd like to welcome both of you to Sjogren's World.
Lindar, you've raised some good questions, and I'll try to answer some of them;
1/ I haven't been to Mayo, so I don't know how you would be treated there, but many of our members in the US have attended several specialized clinics, with varying results, and I"m sure you'll hear from them. In many cases, a university or research hospital is a good choice, if either of those is available to you.
2/Some of our members have reported white matter lesions, unrelated to MS, and I'm sure they will show up soon as well.
3/There are other (more aggressive) treatments available, including but not limited to Methotrexate (low dose chemotherapy), Imuran (antirejection drug), biologics generally used in RA like Enbrel, Humira and Remicade, and the old stand by, Steroids.
4/Tinnitus is a common issue for people with autoimmune disease, partly because the various diseases can have an effect on the inner ear and partly because many of the medications for inflammatory disease can cause it (most anti-inflammatories can, and Plaquenil is broadly speaking and antiinflammatory)
5/ There are a couple of medications available to improve cognition and dispel brain fog...Provigel has had some great reviews here.
Agreenchance, it's not uncommon to be mistakenly diagnosed with MS and later have it changed to SjS, or vice versa...the neurological aspects of SjS are very similar to MS. The surest way to rule out MS is with the spinal tap to look for the presence of oligoclonal banding, even when the autoantibodies and MRIs aren't conclusive. There can be a lot of overlap in lab results, symptoms and treatments with various autoimmune diseases.
Unfortunately the lip biopsy is not as accurate as once thought, and has lost it's standing as "the gold standard in diagnosis", because false negatives or inconclusive results aren't as uncommon as they should be, and even the same test can be interpreted as negative by one doctor and positive when re-read by another.
Please, both of you, enjoy exploring the site, and make use of the search function at the top left, just enter keywords and you'll find older posts that have included them.
Chance!
Did you read (from Dr. Birnbaum's web page) that the treatment for MS can make autoImmune disease MUCH much worse? Are you still taking treatment for MS?
Janna
Hi Lindar and agreenchance!
Welcome to SjS world. I'm glad you've found us - and sorry you had to! Both of your stories sound familiar to me, and the others who arrived here with a diagnosis of MS which then turned out to be SjS with cns involvement. In fact, if you read their biogs, you'll see that the two wonderful people who started this site share that journey with us.
You've both been through so much and my heart goes out to you. There's lots to say but I'll answer just a few queries for now. (If you'd like to message me I can answer specific questions.)
SjS with cns involvement can look just like MS, with elements of RA as well as the dryness issues. There are some informative articles on this site which explain a lot. My journey began years ago with generalised right side tingles, and then a numb toe. Looking back I'm now seeing connections with rheumatic fever at age 3, related heart valve damage, endometriosis, migraines etc. My neuro diagnosed MS (Primary Progressive) within minutes of meeting me 3 years ago, but white lesions on MRI were not backed up by LP oligoclonal bands so I was in diagnosis limboland until almost a year ago when a rheumy diagnosed SjS, again within minutes!
Treatment - Lindar asked about 'aggressive' treatments that might work. Most of us here are on Plaquenil with or without Prednisolone/Prednisone. Then some people add in Imuran or CellCept, both of which are immunosuppressants. These work for some people although you have to give them at least 6 months, as you do with Plaquenil. I've been on Plaq/Pred/CellCept and pain meds for 8 months but this combination isn't working so I'm about to start on really aggressive treatment ie cyclophosphamide.
Brain fog - there is lots of discussion here about brain fog which I'm sure you'll find useful. It's clearly much more than can be ascribed to age or menopause or exhaustion, or a combination. I've had neuro psych tests connected with MRIs to try to make connections between white lesions and brain fog but the results are still with the researchers. Who knows what they'll find?!
Pain and walking issues - I also lose control of my legs (and arms) and have lots of numbness, tingles and cramps. Pain is a big issue as you both say - I don't think 37 is old enough to justify that, agreenchance! Or even 48 as I am. What pain meds have you both tried? I'm on Diclofenac/Voltarol; morphine; paracetamol; and low dose nortriptyline for neuropathic pain. Helps a little.
Doctors - I'm in the UK so luckily enough health insurance or cost aren't an issue for me with tests and treatment. But it does mean that I'm unlikely to get to see Dr Birnbaum at Johns Hopkins. He's said in posts here that he's happy for people to email him directly and his contact details are on the Johns Hopkins web site. I'm sure he'd be interested in hearing from you both.
agreenchance is absolutely right about being our own advocates. The main problem with that is that we're often too exhausted to fight the fight. But you're also right - everyone here is happy to 'experience the bumps along the way' and we definitely care.
Keep posting and let us know how you are.
Thinking of you both - Chickpea
I understand Cleveland Clinic has a very good Sjogrens Clinic. I have not been there, but others on this site have.
I'm not sure which is closest to you Lindar. Lucy
Hi Lindar and agreenchance :)
Welcome to Sjogren's world from me too. Can't really add anythinh insightful to what's already been said. I hope you both fijd the site useful.
Take care - Scottie :)
Lindar, Good luck in your search for answers. Not knowing is difficult. To remember things when I am not at home and near the post it notes, I call my answering machine and leave me a message.
JannaLee, Thanks for the info on Dr. Birnbaum. I copied your post and added it to my file.
Roxanne
agreenchance,
Thanks for the reply. I was thinking I was on the same path to being dxd with MS and I really don't think that would be correct.
I had also read before that perhaps the Mayo would not be the best way to go if I have sjogren's so your post helped me to confirm that too.
Certainly at 37 you are NOT old and should not be having that much pain. I am 56 and when I went to dr 3 years ago, I told him I thought I was too young to have this much pain... he agreed.
I have not had the lip biopsy and yet was dxd by both my GP and my Rheumy as having sjogren's. In some ways I think I'm lucky to at least have a diagnosis. (it seems like a crazy thing to say but those dealing with autoimmune diseases that are so difficult to dx anyway, would probably agree) I really feel for those that have everything pointing to sjogren's but can't get a doctor to diagnose it. (such as yourself). My parotid gland (left side) occasionally swells up and I look like I have the mumps. I also have sores in my mouth. It is interesting to me that at one time, my eyes were my worst symptom and now although they are still dry, my mouth and glands are worse. I believe this disease may "evolve".
I agree that each doctor will pass us off to the next specialist if need be. Or.. give us a dx based on their specialty. I too believe it is a flaw in our system.
I think I will persue trying to get an apt at Johns Hopkins. I read that Dr Birnbaum only sees patients on Wed so maybe if I made an apt now, I would have the money by the time I got to see him? I'll keep you posted.
You describe our quest as exhausting. I have seen so many doctors and so many tests in the past 3 years that most days I don't have the energy to make an apt for another opinion. Right now I need to make an apt with my allergist so I can get allergy prescription renewed. I am putting it off because I just don't want to go to one more doctors apt. On the bright side... My apts give me a chance to catch up on all the gossip magazines that they have in the waiting rooms. I don't need to subscribe to any of those magazine (nor would I probably) because I can stay up to date by reading them in the waiting rooms. ;D
Thanks again for your post.
Linda196.
thanks for the reply. Good to know there are other more aggressive meds out there. I can pretty much deal with my pain and fatigue right now but the neurological manifestations scare me. Perhaps another medication would be better than Plaq.
Provogil got some bad press recently (I think) but the Cognitive therapist that did my testing suggested getting a prescription for it. I'll see what the neuro says.
Chickpea,
Thank you too. Keep us posted on how the new treatment goes for you. I have avoided going on prednisone but did a short course of it when I had the 4 month rash from the sun. It has been suggested that perhaps large doses of it might help my tinnitus. I wasn't sure it was worth the risk for that so I declined. If I needed it for pain or some other reason I'm sure I would take it but tinnitus..... I just live with this lovely music in my ear 24/7.
I really appreciate everyone's support here. I'm sure many years ago having this disease was probably scary and lonely.
lindar and greenc ahnce
welcome to you both, so sorry youv ebeen through all this,s ems to be the way of dx with sjs.
I am still to go on planequil, just awaiting lip biopsy now, but i have got tinnitus, started with repeated ear infections, and subsequesnt hearing loss, another lady here scottie is same, so i aske dmy rheumy (uk) and she agreed that sjs can cause these features, tinnitus is darn annouying this i know, but strangely you do tune it out and most times i dont notice it now.
im 37 also, and brain fog is a feature for me also, as with many of us here, not nice i know, but it certainly sint age related!
Glad your hear to get support and advice, the two ladies who started this forum were initially DX with MS only to find it was actually SJS, yes as your now reading there are ways to treat more agressively , and im hoping you both find a rheumy who will be ballsy in your treatment, terrible ppl have to scour the earth for a knowledgable docotr in SJS, but least you have tghis forum to hear expereinces from members whove been where you are now, and can possibly give advice that might save wasting precious money!
welcome to you both
T x
I was reading one of the CNS articles on this great site by Dr. Steven Mandel....boy, this guy sounds like he knows what he is talking about!!
He is in Philadelphia, PA..you can find info on him on the web. I would also consider the Cleveland Clinic. I went there 5 years ago and was impressed!
Gursie
Hi Lindar. I have tried provigil for the brain fog. It's typically given to patients that can't stay awake. I only took this once and had a severe allergic reaction to it (and celexa and ambien). I had extreme nerve irritation, numbness/tingling radiating from my neck to my hands. It also raised my blood pressure. By the time I got to the emergency room I couldn't speak in sentences. I couldn't think clearly. Everything (sound, touch, etc) irritated me. I couldn't sit still-just kept on rocking back and forth. I was gorked out of my mind. I don't think this type of reaction is normal-just wanted to share my experiences. I was seen at the Mayo Clinic in Rochester Minnesota in February of this year. My 1st rheumy didn't think the brain fog and extreme fatigue I was experiencing was related to sjogren's. She wanted me to have a full evaluation. It did take a referral from her. I was not able to make an appointment myself. My initial appointment was with the neurology clinic-however I was seen by several clinics while I was there including rheumatology. I was not impressed with the rheumatology clinic-the doctor didn't spend more than 5 minutes with me and was not very compassionate. The average stay is about 5-9 days depending on what tests/visits are ordered. They do a great job getting everything done in a timely fashion. Luckily, they were on my insurance so I didn't have to pay an out of pocket fee. I did have airfare and hotel expenses though. Most of the hotels in the area give a Mayo Clinic discount. I don't think they are experts in sjogren's but do have some knowledge-that was my experience anyway. I came back not knowing anymore that when I left. They did do a few tests that hadn't been done before-ruled some other things out. If I had it to do over again, I would go to a sjogren's clinic. Dr Vivino is supposed to be an expert in the field. He practices in Pennsylvania. There are several others out there. I have been thru 2 rheumys and still haven't found a doctor that I think can help me, is compassionate, will listen, is willing to learn more about sjogren's, etc. Don't give up. There are good doctors out there. We just have to keep trying. We all deserve to find that great doctor. I hope you find yours soon!