Does anyone have trouble with Sjogren's effecting the brain?
Looking to chat with the someone with those kind of issues
Thank You in advance
Hi Country Girl….I am waiting on the MRI but they have put me through every other test to rule out other stuff. Even before the tests, I had a full neurological workup and that is exactly what he thinks it is. Actually my rheumy sent me to a neuro because that was his feeling too. I have gotten quite the education lately, like it or not. I would be happy to talk about it. I don't really tell my family about this one because I don't want to scare them (even though it scares me). And it can be very hard to describe exactly what things feel like sometimes. There isn't a lot that accurately describes some of the feelings or sensations it causes….. anyway, I'm here.
Hi Country Girl,
I just had an MRI Friday. It will be interesting to see results. I saw my PC earlier in the week & had a thorough exam
with some things like those done at the Mayo Clinic when my mom was diagnosed with Alzheimer’s Disease. I also had a whole bunch of blood tests. The concern was that I had lost touch regarding day/time and also some very unusual memory slips. I am in the midst of my worst flare up ever and several other major stressors have occurred this past month. I thought it might have just been heavy duty brain fog, but friends thought it was more and asked me to see my PC doc (who is an Internest, but is ever so much more sympathetic, thorough, knowledgeable +++ than the rheumy I saw).
I will try to get back to this thread when I get results and understand more. I will also see if there are any references to lesions on the brain in my copy of The Sjoogren’s Book from the Sjoogren’s Foundation. It is chock full of articles by top SD docs regarding all the symptoms. You might want to check out the Foundation’s website.
I also don’t want my family to worry needlessly, especially if there really is no major problem. That is probably a good idea for those of us who are waiting for our docs to better figure out what seems like MUCH more than brain fog.
Do try to get plenty of quality sleep, talk to your doctor and try not to worry too much.
Hugs,
Firstmuv
Yes! My brain goes into la la land. I can not maintain a conversation clearly, I cry for lack of words, I can not hear/understand what people are saying, everything is too loud or blurred, I repeat my self, I can not remember last nights dinner or if I had it, I can not remember to get ready and go to a planned event, I do not attempt to drive. All this when I’m off my alternative path!!!
I’m following this thread because I have primary Sjogren’s and my rheumatologist just ordered an MRI on my brain and EMG. I go for both on Tuesday. So much to be concerned and looking for in this disease.
I have had a couple of MRIs showing lesions. I see the MS specialist next month, but we don't know if I have MS or something to do with my Sjogren's. I am not sure if I have primary Sjogren's or not because different doctors have speculated on whether or not I have something else going on, as well. I do have a positive SSA/SSB. I am afraid I don't have an actual rheumatologist here, like I did at Johns Hopkins years ago. I am having neurological symptoms, that i did not have before, but the cognitive problems, dizziness, and weakness are old visitors. Do any of you have balance problems without dizziness? Or weird sensations like tremors or chills, but not fever related or actual cold related?
Iv'e been going thru similar things for a month: I shake inner core and my hands and legs terribly. My skin tingles/burn on cheeks, legs, arms. It is also affecting my heart rate and BP with weakness, bladder,and brain fog. This comes and goes and is getting worse. I am currently seeing Dr. Grader-Beck at John Hopkins and I see a lung dr and kidney dr this week and he is tryig to schedule a EMG soon. I'm hoping he comes up with a solution soon because I want my life back. I am in bed a lot
. This ismy second trip to JH, 8 hour drive. Hopeful, Drygirl
Kaz said:
Yes, balance issues. Yes, to the tremors and chills. My whole body sometimes vibrates like I am plugged into an electrical socket - shakes internally. Other times shakes externally. At the moment on my left hand I have two fingers that move about while the others all stay still. I also get the chills, but with mine my body temp actually drops to between 34 and 34.5. My MS neuro said he thinks my hypothalamus is affected now. I also get massive areas on my body that burn like ice burn and are just as cold. All other sections of my body will be warm as toast. The central nervous system is incredible!!
Hi all,
So many of us suffer cns issues with this nasty disease, but I also would like to remind everybody of another important condition a number of us have that can be associated with white matter lesions. Migraine.
In the case of white matter lesions related to migraine, research has not shown that they are symptomatic. Nobody is sure what’s really going on, or even which is the chicken or the egg, or if the egg came from a snake, lol. The overall consensus is that, at this time they are not symptomatic, and therefore not taken seriously yet. It seems the brain functions completely “normally” despite these lesions. Most researchers agree that more studies are warranted however.
Maybe this will help a few out there…
~Ellen Schnakenberg
Migraine Educator and Advocate
Ellen, you are correct. Migraines are pernicious punishers (say that fast five times) I have migraines, as well, as trigeminal neuralgia, and the neurologist here said that the lesions could be caused from either. However, whatever the underlying issue, it is obvious that I have neurological problems that need to be looked at....and determined the cause to make sure that the migraines and TN are not a symptom rather than a cause. Sigh. Life, an adventure...always.
Bookgeek,
Don’t know if this helps at all, but migraine is a primary disease, meaning it can’t be caused by another disease or disorder, nor can it be a symptom. Triggering migraine when you are an autoimmunie is a big problem though, as even the meds we often have to take can be great migraine triggers too. The trick is minimizing triggers as more migraine attacks equals (to a degree) more chance at these hyper dense lesions. Brain lesions from TN? TN affects nerves, not brain tissue. Are you seeing a TN specialist, or headache specialist? Changes to seeing these specially trained docs may be life changing for you. They’re few and far between though. We travel 7 hours one way for my headache specialist, and a TN specialist requires an airplane flight. Ugh.
Did you know Migraine and other headache disorders potentially associated with autoimmunity (or not) can cause TN like symptoms? All are diagnosed together, the information is available by googling ICHD 3. The PDF version is tougher to use though.
Ellen Schnakenberg
I wanted to Thank everyon for the information, the support, I am over whelmed....I am blessed to find this site. Thank You!!
I want to answer everyone but right now I will add about the Lessions on my brain. Over the years they have grown and they are causing me to have "seizures". I am on a seizure med and its helping. Also I have times were I black out, or just feeling like I am going to pass out. The MRI of my brain points to MS. I am seeing a very good nero who DX me with Sjogrens.
He said Sjogrens can cause the CNS problems I am having. He is not convince I have a seizure disorder, he believes the underlining problem is the sjogrens. He also said the way my symptoms and tests are heading he is more concerned with the "brain" issues down the road. Possibly may have MS as well....still waiting on recent blood work. My blood did test positive for sjogrens and was confirmed with eye Doctor.
Ellen, thank you for the information. I am seeing a regular neurologist because that is what we have here. Right now my TN and Migraines are under control, but my other neurological symptoms are not. You gave me a lot of good info, and I will look up the part you mentioned. I was told that headaches are common with MS and Sjogren's, so I assumed that that made it a symptom. I do not remember, though, if the doctor said anything like that. My assumption, I think.
Eschnak said:
Bookgeek,
Don't know if this helps at all, but migraine is a primary disease, meaning it can't be caused by another disease or disorder, nor can it be a symptom. Triggering migraine when you are an autoimmunie is a big problem though, as even the meds we often have to take can be great migraine triggers too. The trick is minimizing triggers as more migraine attacks equals (to a degree) more chance at these hyper dense lesions. Brain lesions from TN? TN affects nerves, not brain tissue. Are you seeing a TN specialist, or headache specialist? Changes to seeing these specially trained docs may be life changing for you. They're few and far between though. We travel 7 hours one way for my headache specialist, and a TN specialist requires an airplane flight. Ugh.
Did you know Migraine and other headache disorders potentially associated with autoimmunity (or not) can cause TN like symptoms? All are diagnosed together, the information is available by googling ICHD 3. The PDF version is tougher to use though.
Ellen Schnakenberg
Country Girl, I am so sorry you are dealing with the tougher version of SS and who knows what. As you learn, would you share with us? I would really like to understand this aspect of SS better. Best to you.
Country girl said:
I wanted to Thank everyon for thet information, the support, I am over whelmed....I am blessed to find this site. Thank You!!
I want to answer everyone but right now I will add about the Lessions on my brain. Over the years they have grown and they are causing me to have "seizures". I am on a seizure med and its helping. Also I have times were I black out, or just feeling like I am going to pass out. The MRI of my brain points to MS. I am seeing a very good nero who DX me with Sjogrens.
He said Sjogrens can cause the CNS problems I am having. He is not convince I have a seizure disorder, he believes the underlining problem is the sjogrens. He also said the way my symptoms and tests are heading he is more concerned with the "brain" issues down the road. Possibly may have MS as well....still waiting on recent blood work. My blood did test positive for sjogrens and was confirmed with eye Doctor.
I have the same thing...they have tested for and ruled out seizures. Its at its worst when I'm tired but I can't find words or jumble my sentences sometimes. Or I can look at someone talking and not actually comprehend a word they are saying. I asked the neuro if that was what having a stroke was like....knowing what you want to say but being unable to grasp the actual word. He said yes. How frustrating. Mine causes balance issues as well as affecting fine motor skills. And that's before the odd prickling sensations. He said the same as far as problems later....we just don't know.
Hi
I have had migraines since I was diagnoised with SS, funny that never had them before but two months after diagnosis they start up.... I went through a very bad time about 4 years ago when I had 6 weeks off work,,,,, I had extremely bad dizziness, I could not concentrate,,,, I was so fatigued I could not even stand for long... I also had hellucinations, where I actually saw things like this little toy solider skip across my pillow and huge spiders, on the walls I went for every test under the sun,, nothing came up,,, This was also the time, when the my legs developed the temors in them, I also will have like jolts go through my body, where my body will move uncontrollable with one jolt this usually happens at night, the specialist stated it must be SS that had caused it, nothing else came up,,,, the hellucinations have gone away and only lasted for that 6 weeks
Book geek… I will definitely keep all the information coming. I have a lot more to add as well but so little time to type with working and all. As soon as I can I will share more. I hope that everyone keeps in touch with this thread because I am learning a lot from everyone, as well as sharing. Also…I don’t feel so a lone anymore. 
Enjoy life wow your symptoms are almost right on with mine.
Exjbnz I have the tremors in my body at night it’s almost like restless leg syndrome but in my arms ect. My body hurts so bad from the tremors. Thank God it’s not too often it happens… Maybe once a week.
Also someone posted if they don’t get enough sleep that’s when they have more issues and yes so do I. Also stress causes the “brain” issues to become worst for me.
I loose balance if I turn around to quickly.
I just can’t seem to put what’s on my mind into words when I am talking to someone. Other times I am fine. It’s so frustrating for me!!
I described the exact feeling earlier this week to someone about how I feel like it’s restless leg syndrome (which I have) but in my arms. It is s very bothersome feeling. We’re here with you. We understand.
Country girl said:
Book geek… I will definitely keep all the information coming. I have a lot more to add as well but so little time to type with working and all. As soon as I can I will share more. I hope that everyone keeps in touch with this thread because I am learning a lot from everyone, as well as sharing. Also…I don’t feel so a lone anymore.
Enjoy life wow your symptoms are almost right on with mine.
Exjbnz I have the tremors in my body at night it’s almost like restless leg syndrome but in my arms ect. My body hurts so bad from the tremors. Thank God it’s not too often it happens… Maybe once a week.
Also someone posted if they don’t get enough sleep that’s when they have more issues and yes so do I. Also stress causes the “brain” issues to become worst for me.
I loose balance if I turn around to quickly.
I just can’t seem to put what’s on my mind into words when I am talking to someone. Other times I am fine. It’s so frustrating for me!!
I described the jolt feeling at my last rheumy appointment. I told him it feels like a jolt of electricity that hits my body. That was the only way I could of to describe it. Not fun!
exjbnz said:
Hi
I have had migraines since I was diagnoised with SS, funny that never had them before but two months after diagnosis they start up… I went through a very bad time about 4 years ago when I had 6 weeks off work, I had extremely bad dizziness, I could not concentrate, I was so fatigued I could not even stand for long… I also had hellucinations, where I actually saw things like this little toy solider skip across my pillow and huge spiders, on the walls I went for every test under the sun, nothing came up, This was also the time, when the my legs developed the temors in them, I also will have like jolts go through my body, where my body will move uncontrollable with one jolt this usually happens at night, the specialist stated it must be SS that had caused it, nothing else came up, the hellucinations have gone away and only lasted for that 6 weeks
Migraine Educator: This is correct a lot of people have migraines with this disease as well as MS.
I read that Sjogrens and Lupus mimic MS.
Kaz: Thank You for the information. I also read that the lessions on the brain for MS have a certain pattern.
Again as you said it also depends on all the other studies the patient had done. My MRI did state I have demyelinating as well as the bottom line DX MS.
My Neuro recently had a MRI done with Sjogrens Vs. MS for MRI "Tech" to differentiate. I have not received the test results. I will share once I do. I am waiting on all my recent blood work that was done and sent to mayo clinic as well as a Vectra Da test.
I will keep everyone updated. Mainly I am just looking for people with the same "brain Symptoms" to talk with. It's so scary to one minute be fine and the next I am paralyzed, per say....I cannot speak or move, so may different issues. Sometimes I pass out. Sometimes I have seizure like episodes. So, please if anyone can share I just want to know what is going on with me. If this is normal with sjogrens.
Thank You so much!!