Hi there:
I have SS. It was a long road getting to the diagnosis since sicca symptoms were only a recent manifestation. I had neurological symptoms for many years, wrongly originally thought to be MS, particularly considering a brain MRI shows I have white matter lesions. This past year I've developed new neurological symptoms that are worrying me, and I wonder if anyone else has them too.
Since early this year I now have seizures. They are not convulsive or absence seizures; I don't lose consciousness. They are very unpleasant and seem to happen for no reason in particular. I get them when I'm hungry/sated, happy/sad, tired/energetic, sitting still/riding my bicycle, awake/sleeping--although, so far I've only awakened to seizures while also experiencing debilitating headaches at that time. In other words, there doesn't seem to be any pattern to the cause of the seizures. Usually my seizures aren't accompanied by headaches. I have suffered migraines for years, but these headaches aren't like migraines, even though they are very bad.
My neurologist ran a brain CT and a Cerebral Angiogram. They were relatively unremarkable except that apparently I have volume loss, which the radiologist commented is strange for my age--I'm a 46 year old woman. This translates into a slightly shrunken brain, as I understand it. My GP said this is seen in dementia, but that is not its only cause. (Has anyone been told they have this?)
I have had one Electroencephalogram which showed unusual but non-specific electrical activity. My neurologist is repeating the EEG, this time under sedation, on Sept 4/09 to see if there is new activity which might offer some insight as to the cause of the seizures. But, unless I experience a seizure during an EEG, it may not reveal anything.
For over a decade I've experienced neurological symptoms, very much like sufferers of multiple sclerosis. I get: foot drag, bladder urgency/incontinence/enuresis, acute nausea, constipation, "holes" in my vision, visual disturbances, extremity and facial numbness & tingling, Raynaud's phenomena, droopy right eyelid (ptosis), debilitating fatigue, insomnia, headaches, etc.
Around Easter, I had a really weird experience. For four days I suffered what felt like electric shocks that started in my left foot, and coursed rapidly up my body causing it to spasm in discomfort. One day I had 48 shocks! This four day night mare fortunately has not since recurred, but it was horrible. (Has anyone else had this or something similar?)
I read that about 2 percent of the SS population suffers seizures. I asked my neurologist what could cause them. He doesn't know. I see my rheumatologist for my check up in a couple of weeks, and I plan to ask her the same question. Neither my neuro nor my rheum doctors see a great many SS patients, so they admit they are somewhat ignorant of all the possible manifestations of this disease. Still, they are much more informed than any other doctors I have seen, and over this past 2 decades, there has been an extensive list (needed in securing my diagnosis). So, I don't know to whom I can turn to help me with this.
I am worried this darn disease may be progressing.
I try to live my life to the fullest all the time. I am quite active and fit; I eat a predominantly vegetarian, low fat diet (I do still eat fish), exercise every day, don't smoke, drink alcohol or take any drugs except occassionally Stemetil (for nausea) and Advil for migraines medicine.
I have found the only thing that brings me out of a flare up is to force myself to get active again as soon as I possibly can. I force myself to jump on my stationary cycle and work up a sweat, even when I feel like puking. This seems to re-set my immune system. I'm a serious cyclist, and this also helps to keep me from losing muscle tone in my bad spells. When I first got sick, I didn't know what was wrong and I stopped exercising except I tried to walk regularly. I got very weak, and this seemed to make the flare ups last even longer. It took me a long time to get back to where I'd previously been fit-wise, that being someone who takes a quick bike spin of around 40 kilometers per trip. So, my advice to anyone trying to climb out of a flare up is push yourself to be as active as you can comfortably be. (I don't mean to start doing anything you've not done previously--this isn't the time to give yourself a heart attack!) I mean, drag yourself upright and go for a walk; do some yoga; stretch; whatever. And, laugh! Depression is a huge complication of anyone with a chronic disease. I have to remind myself to do things to make myself happy, particularly when I feel like filth, I can't work (makes me feel useless during those flares!) and I can't go for a bike ride in the sunshine which always makes me smile.
Anyway, I started this thread because I would like to hear from anyone who may have the weird systemic symptoms I get. Take care everyone--I wish you all the best.
:wave:
I have SS. It was a long road getting to the diagnosis since sicca symptoms were only a recent manifestation. I had neurological symptoms for many years, wrongly originally thought to be MS, particularly considering a brain MRI shows I have white matter lesions. This past year I've developed new neurological symptoms that are worrying me, and I wonder if anyone else has them too.
Since early this year I now have seizures. They are not convulsive or absence seizures; I don't lose consciousness. They are very unpleasant and seem to happen for no reason in particular. I get them when I'm hungry/sated, happy/sad, tired/energetic, sitting still/riding my bicycle, awake/sleeping--although, so far I've only awakened to seizures while also experiencing debilitating headaches at that time. In other words, there doesn't seem to be any pattern to the cause of the seizures. Usually my seizures aren't accompanied by headaches. I have suffered migraines for years, but these headaches aren't like migraines, even though they are very bad.
My neurologist ran a brain CT and a Cerebral Angiogram. They were relatively unremarkable except that apparently I have volume loss, which the radiologist commented is strange for my age--I'm a 46 year old woman. This translates into a slightly shrunken brain, as I understand it. My GP said this is seen in dementia, but that is not its only cause. (Has anyone been told they have this?)
I have had one Electroencephalogram which showed unusual but non-specific electrical activity. My neurologist is repeating the EEG, this time under sedation, on Sept 4/09 to see if there is new activity which might offer some insight as to the cause of the seizures. But, unless I experience a seizure during an EEG, it may not reveal anything.
For over a decade I've experienced neurological symptoms, very much like sufferers of multiple sclerosis. I get: foot drag, bladder urgency/incontinence/enuresis, acute nausea, constipation, "holes" in my vision, visual disturbances, extremity and facial numbness & tingling, Raynaud's phenomena, droopy right eyelid (ptosis), debilitating fatigue, insomnia, headaches, etc.
Around Easter, I had a really weird experience. For four days I suffered what felt like electric shocks that started in my left foot, and coursed rapidly up my body causing it to spasm in discomfort. One day I had 48 shocks! This four day night mare fortunately has not since recurred, but it was horrible. (Has anyone else had this or something similar?)
I read that about 2 percent of the SS population suffers seizures. I asked my neurologist what could cause them. He doesn't know. I see my rheumatologist for my check up in a couple of weeks, and I plan to ask her the same question. Neither my neuro nor my rheum doctors see a great many SS patients, so they admit they are somewhat ignorant of all the possible manifestations of this disease. Still, they are much more informed than any other doctors I have seen, and over this past 2 decades, there has been an extensive list (needed in securing my diagnosis). So, I don't know to whom I can turn to help me with this.
I am worried this darn disease may be progressing.
I try to live my life to the fullest all the time. I am quite active and fit; I eat a predominantly vegetarian, low fat diet (I do still eat fish), exercise every day, don't smoke, drink alcohol or take any drugs except occassionally Stemetil (for nausea) and Advil for migraines medicine.
I have found the only thing that brings me out of a flare up is to force myself to get active again as soon as I possibly can. I force myself to jump on my stationary cycle and work up a sweat, even when I feel like puking. This seems to re-set my immune system. I'm a serious cyclist, and this also helps to keep me from losing muscle tone in my bad spells. When I first got sick, I didn't know what was wrong and I stopped exercising except I tried to walk regularly. I got very weak, and this seemed to make the flare ups last even longer. It took me a long time to get back to where I'd previously been fit-wise, that being someone who takes a quick bike spin of around 40 kilometers per trip. So, my advice to anyone trying to climb out of a flare up is push yourself to be as active as you can comfortably be. (I don't mean to start doing anything you've not done previously--this isn't the time to give yourself a heart attack!) I mean, drag yourself upright and go for a walk; do some yoga; stretch; whatever. And, laugh! Depression is a huge complication of anyone with a chronic disease. I have to remind myself to do things to make myself happy, particularly when I feel like filth, I can't work (makes me feel useless during those flares!) and I can't go for a bike ride in the sunshine which always makes me smile.
Anyway, I started this thread because I would like to hear from anyone who may have the weird systemic symptoms I get. Take care everyone--I wish you all the best.
:wave: