Country Girl, I sure wish I knew....for your sake, as well as the rest of us on here. I think, though, that by sharing information over time, we will have better questions to ask our doctors. I know our feedback, if we have a doctor who listens, can be invaluable.
Thank you Bookgeek!!!
I have no idea what restless leg sydrome feels like, but I know that with this last episode, it felt like a there was pulsating tremors moving down my arm, and it was hard. I think if I had had xray vision, it would have been like what it looks like when a slinky is moved forward. I get that feeling to a lesser degree elsewhere, but it is worse in my arm. It started as almost a buzz. I remember thinking that as hard as it felt, it should be visible, but other than a slight tremor sometimes, you could not see it.
Sick&Tired said:
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!!
Country Girl, we are definitely not alone which is both a blessing and a shame. I would not wish this on others, but I am grateful for the company....if I am being honest.
My MRI said there were changes since last time and the lesions were similar to ones that could be found in MS and other conditions like migraines, so nothing conclusive there.
Is the paralysis normal for SS, though? I have not heard that one before, but if it can do some of the other stuff, that should not surprise me.
Kaz, if SS is known to piggy back with other autoimmune diseases, why can't it do the same with MS? And, are they really two separate conditions....that is just me wondering.
Kaz said:
I have both multiple sclerosis and sjogrens. I do not test positive to bloods for Sjogrens but test positive to other tests and have been classed as very severe sicca symptoms, sicca means dry.
There is question as to whether I actually have MS, but rather have primary Sjogrens instead given some of my symptoms. Primary Sjogrens can cause lesions (plaques) just like MS in similar areas plus have a relapsing remitting type of occurence which makes it difficult to work out whether it is Primary Sjogrens, or MS being the main autoimmune disease and secondary Sjogrens to that.
I was diagnosed with MS over 14 years ago, and Sjogrens around 5 or so years ago but have suffered terrible Sjogrens symptoms since my early 20's but was dismissed each time I mentioned things. Although my gynae picked up on issues but did not know why. He did say it appears to be a problem with your moisture producing glands and he was spot on. Now I have posed to them could I in fact have Primary Sjogrens and not MS, and given all my really bad symptoms of late they are now actually considering this. I have an appointment shortly with a group of specialists - immunologists, rheumatologist and dermatologists to try and get to the bottom of it, as it is very important to know which one has as the treatment for Sjogrens can worsen MS and vice verse. They are also now considering whether I have Bechets or if my Sjogrens is just so severe it has caused deeo ulcers on my tongue exposing nerves and ulcers in my GI that caused a big bleed. These ulcers last for a few months and the pain is excruciating and they respond slowly to steroids. This is why now I am under review to try and determine is it Primary Sjogrens and I am very bad, or MS with Behcets etc.
It is also extremely difficult to diagnose some autoimmune diseases as there just is not one clear cut test. With Sjogrens it is a whole history, plus presenting features and then different blood tests in which they look for a pattern. However, in Primary Sjogrens only 40-50% will ever test positive. So it is not a simple process. The same goes with MS. There is no one test. but a whole array of things and patterns they look for. Having an MRI will help distinguish what is going on. However, it may not solidly give an answer. So no cut and dry answer and sometimes they get it terribly wrong... If one is not responding say to treatment, then one needs to question why. Is it because one has been incorrectly diagnosed in the first instance...
There also is a type of Sjogrens called CNS Sjogrens - a little different to primary Sjogrens which I will place a link for you to read about.
Here is a list of different mainfestations associated with Primary Sjogrens. A person may experience a few of these or many. I will add a glossory on certain words for in case some people do not what they refer to.
Here is a link from John Hopkins Hospital talking about the same as I have just posted in regards to Primary SS and explains each thing a little more. I actually was tested for the NMO-IgG antibody in Neuromyelitis Optica (often referred to as Devics), but was negative. So we know this is not an issue for me, although the test again is not 100% sensitive. Devic's, up until this test was devised was thought to be aggressive MS. But we know now it is a totally separate disease and is treated differently. Anyone who has had optic neuritis (especially as first symptom) more than once should request this test.
http://www.hopkinssjogrens.org/disease-information/sjogrens-syndrom...I have attached a file with a journal atticle on CNS Sjogrens.
Country girl, I have suffered what my Rheumatlogist finally labeled as "severe muscle attacks", they are so severe they look like a seizure. I have posted about this in detail on the PsA, and Fibromyalgia site. I've had 3 brain MRIs and it as determined that there was no brain involvement.
These can start in any part of my body, my foot, my leg, my ribs, my back, my neck, and spreads to every muscle in my body, I have absolutely NO control to prevent them, or stop them. I take Dr recommended doses of cal/mag, potassium, D3 and a good multi vit/mineral supplement. I get them through my DC, so they are top notch, so it is NOT a deficency.
I'm not sure if this is what you experience, but it's hell, believe me, and 'severe muscle attack' is the best answer, only answer. The still suspect MS or SLE to show up.
But this is just me, I have yet to know of anyone else who has them, but the Rheum did not seem alarmed. My husband and mother always want to call the ambulance, but I refuse, as they never seem to know what to do with me!
Kaz, this is interesting, and I will use the info for when I see the specialist. I have had SSA/SSB positive antibodies or whatever, so I will keep this in mind.
wow!!!!!!
KAZ Thank You so much for the information. I am going to read everything very carefully and post back.
I greatly appreciate the information! Also the support of each person.....you are all very caring!
SK: My "seizure" like episodes have been said to be partial seizures. Again I don't have seizure disorder, its from the sjogren's. The paralyzed issue is so scary and strange. I can't move and I just lay there with my eyes open, the noise around me sounds like so far away. Same time I feeling so weak and can't move my limbs. Lasts for a few minutes and than I am fine. After any epsiode I am extremely tired. I don't know how else to explain that. Again I have seperate occasions of my body moving uncontrolabel and I pass out. Also I will just be sitting or standing and I pass out. I can feel all of this coming on. I try to fight it and if I know its gonna happen I try to find a place to lay down. Since I have been on the seizure meds its much better. My new neuro believes its all the sjogrens.
What an interesting thread. I also have PSSand it has given me a lot of issues. I also have had dizziness and loss of balance. I saw a neuro who said nothing is wrong. I developed neuropathy in my hands and feet but tests say nothing is wrong. I developed tremors in my head and hands and a different neuro called it familial tremors but the problem was no one on either side ever had this. He told me they would only get worse but then one day they just stopped. They come back periodically so I saw a movement disorder specialist and my mri was negative (of course) and he called the tremors myoclonus.
I get episodes where I can’t remember the name of someone close to me or forget the words that I was about to speak. Neurologically I test as normal butI guess it is all sjogrens.
So many things can go wrong with us as it did for me. I started Orencia so I am hoping to catch a break. For anyone starting out here don’t write off symptoms as SJS. Keep a journal and bring it to your neuro. Neuro symptoms should always be taken seriously. Don’t give up.
Thanks Kaz for that great I fo.
Cassi440
When I first started years ago with the movement disorder it was called Myoclonus. After many years things progressed from the myoclonus into the neurological symptoms I have now that I have posted. This is going back from 14 or so years to now. I was also DX with psoriatic arthritis around the same time the myoclonus started.
Cassi440
I also have the neuropathy in my legs. I have the balance issues. When I turn around quickly I loose my balance. My neuro said this is all with the sjogrens. As Kaz posted these are some of the symptoms that go along with the Sjogrens and CNS
Much as I hate that we suffer like this, I am intensely grateful for this thread right now. I have already had a neuro work-up, tested for seizures, etc. Just had my MRI yesterday. The neuro said he thinks its lesions but waiting for results to be sure. It all makes me very nervous but, as with much of this, I just want an answer for the symptoms. Thank you Kaz again for the awesome information.
Hi EnjoyLife,
I can relate to the jumbled sentences, I struggle with that so often now, writing and speaking. It is the first indication that I am tiring and need to pull back, rest, or sleep.
EnjoyLife said:
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.
That sounds like a great idea Kaz. Thanks for all this great info and the work you put into it.
Kaz said:
If anyone would like to see part 2 of the MS presentation that I did, please let me know and I will post this. From memory I have it in 3 sections. I also had some great videos but it makes the files too large. However, if anyone is interested in th videos (they demonstrate things like what happens in the brain to cause these lesions - lesions in SS are formed the same way as MS), then I can see if I can just post the actual link. So please let me know.
I am also considering putting a presentation together soon for Sjogren’s. When I do this I will post as a separate thread and do it in sections and obtain feedback from the group as to how the presentation looks as I do my first draft etc., as I will use this also for uni to educate others. It helps to get others, who have the disease, to cast their eye on these presentations for their opinions.
Kaz I know its a lot of work, but if u can post the information I would be so greatful
Thank You !!
Kaz, I need help. Im in my second week up at John hopkin ssjogrens center and the sjogrens doctor wont call me back or answer emails, havent heard from him in a week now.. Still having burning/tingling and shaking and bp heart rate up with it. Saw lung dr and have problems with lungs and need endoscopy on mon. Kidney dr is checking blood but is on vacation for a week. I never thought coming to John Hopkins Sjogren's center would be so frustrating with no one figuring out the burning skin issues. Had the pheriphial neuropathy shock test and that did not show anything. No one is mentioning SS and the brain lesions like your presentation. Do people with the lesions get Auras and worsening vision in one eye? Bladder issues come and go as well as kidneys both sides just started coming and going.
Feel horrible and need answers. Drygirl
Kaz said:
Yes, I also have issues too with BP and heart rate. Tingles on cheeks, nose etc., as well. Have an issue with my bladder - neurogenic bladder. With the pattern of it coming and going is suggestive it may be MS, but then again Primary Sjogrens can also cause these issues and come in a relapsing type of pattern. I also go through bouts of being in bed a lot. The best thing though is to try and keep active. Do gradual exercise even when you feel crap. Just a few minutes a few times a day and build up.
Hi
I also have inner shaking I have had that for years, bouts of extreme dizziness, But not for a while my muscles in my arms are numb, and I have very weak muscles in my arms,,,that is why I do strength training, I also have a jumbled brain when it comes to talking,, sometimes.... no a lot ....I will say something and people will look at me very strange,,, they start to ask me questions about what I have said, what happens to me is that I will say something I think I have said it out loud,,, but I have thought it in my brain, and then will talk out loud the rest of the conversation and people only hear half the conversations... I have done that for so long many many years I also have like moments when I am driving where my brain tends to switch off and suddenly I am thinking how the hell did I get here,,, I cannot remembering traveling for the last say 2 miles in the car. I mean I must have been thinking to drive,,, but it is like I am on auto pilot. just thought that I would add something else to the thread and ask has anyone else had this????
Have had the driving wonder how I got where I am without really knowing too. Talking thing comes and goes and brain fog too. Do you know what causes the inner shaking? Are you on prednisone? Drygirl
exjbnz said:
Hi
I also have inner shaking I have had that for years, bouts of extreme dizziness, But not for a while my muscles in my arms are numb, and I have very weak muscles in my arms,,,that is why I do strength training, I also have a jumbled brain when it comes to talking,, sometimes.... no a lot ....I will say something and people will look at me very strange,,, they start to ask me questions about what I have said, what happens to me is that I will say something I think I have said it out loud,,, but I have thought it in my brain, and then will talk out loud the rest of the conversation and people only hear half the conversations... I have done that for so long many many years I also have like moments when I am driving where my brain tends to switch off and suddenly I am thinking how the hell did I get here,,, I cannot remembering traveling for the last say 2 miles in the car. I mean I must have been thinking to drive,,, but it is like I am on auto pilot. just thought that I would add something else to the thread and ask has anyone else had this????
Does this cause Auras in the eyes that come ad go with no headache? I just had some eye movement going back and forth not dizzy but feeling like I could faint.
How do they treat this with meds?
Eschnak said:
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