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Old 01-12-2010, 04:28 PM   #1
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seizures anyone?

Hi all:
I have Sjogren's with brain lesions. I have all the MS symptoms and was originally misdiagnosed with MS. Just this year I've developed seizures. I've had 2 EEGs, a cerebral angiogram with contrast, a head CT scan, plus an MRI of my brain (also had countless brain MRIs in the past). Still, there is no explanation yet as to why I'm getting seizures. They are inconsistent happening during my sleep sometimes, too. (Although, while sleeping, they occur in tandem with very bad headaches.) When I get them while awake, I more often than not, don't have a headache when I have a seizure. They happen when I'm hungry/full; tired/well rested; happy/sad, etc. In other words, there seems to be no pattern whatsoever. I'm now being followed by a neurologist who specializes in treating seizure disorder but even she is scratching her head. Granted, she is not an expert in rheumatological disorders so these seizures may be quite alien to her. I'm 47 years old and female and although I have likely had Sjogren's for a couple of decades, I was only positively diagnosed with it about 6 years ago (lip biopsy was profoundly positive). Has anyone else had any experiences like this? I'm pretty worried about it. My MS symptoms are annoying, but until this year, had remained unchanged for the past couple of decades. I don't want to think I might be progressing. Did I mention that my brain MRIs always show some lesions? (This too has been consistent for the past decade.) Any thoughts anyone? Would be much obliged.

 
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Old 01-12-2010, 07:15 PM   #2
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Re: seizures anyone?

Hi, I don't have seizures. I don't even know if I have sjogren's for sure but was diagnosed with sicca syndrome and a mixed connective tissue disease. I haven't had the lip biopsy yet, been avoiding it. Spinal tap didn't indicate ms but I have the symptoms too. I am having brain scans every six months to see if there are changes. I can't have MRIs.
I do have a question though. You said you have lesions in your brain. I have unusual multiple calcifications and abnormal brain shrinkage. The rheumotologist I have now through Kaiser, in response to my question, said yes calcifications can be in sjogren's but I wouldn't be able to move. It sounds to me like you can move.
I plan to switch insurances so I have more options to other neurologists and rheumotologists. Can you see other doctors too showing them your records for their imput? I hope you get answers. It has to be scary for you.

 
Old 01-14-2010, 11:28 AM   #3
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Re: seizures anyone?

Quote:
Originally Posted by Mel52 View Post
Hi, I don't have seizures. I don't even know if I have sjogren's for sure but was diagnosed with sicca syndrome and a mixed connective tissue disease. I haven't had the lip biopsy yet, been avoiding it. Spinal tap didn't indicate ms but I have the symptoms too. I am having brain scans every six months to see if there are changes. I can't have MRIs.
I do have a question though. You said you have lesions in your brain. I have unusual multiple calcifications and abnormal brain shrinkage. The rheumotologist I have now through Kaiser, in response to my question, said yes calcifications can be in sjogren's but I wouldn't be able to move. It sounds to me like you can move.
I plan to switch insurances so I have more options to other neurologists and rheumotologists. Can you see other doctors too showing them your records for their imput? I hope you get answers. It has to be scary for you.
Hi there:
I live in Canada so our health insurance is different from yours. In Canada, we are legally allowed to request copies of all our health records and can take them to other doctors for second opinions, etc. I don't know what your insurance coverage permits, unfortunately.
It is unfortunate that you are unable to have MRIs. They seem to be the only tool that really images brain lesions. I'd had many CT scans that didn't show them, but they are clearly visible on my MRI scans. My neurologists aren't sure if these are demyelinization lesions or vasculitic lesions. I too have been told that I have unusual brain shrinkage for my age. I think Sjogren's also dries out our brain tissue which causes this--but this is just my theory. Perhaps the lesions that are showing up on your scans are actually like mine; not calcifications at all. But, perhaps the type of imaging currently being used is not the best form to reveal the true type of lesions.
Like you, my spinal tap didn't show anything. It was a lip biopsy that finally gave me my diagnosis. I know it sounds awful, and I was afraid to get it done, but I had a really good oral medicine doctor and it wasn't bad at all. She froze my mouth and then took small snips in a few places. I made the mistake of eating strawberries for breakfast after the procedure. I guess they are very acidic, and even through the freezing, my mouth was hurting badly when I bit into them. The pancakes they were perched upon went down just fine, though! (My comfort food!) So, I would recommend avoiding any acidic foods for a couple of days following the test, if you get it done. I was otherwise fine and healed very quickly with only the slightest amount of discomfort from it.
My "typical" symptoms of SS didn't really manifest until a few years ago. I had all the weird stuff first. SS is frequently misdiagnosed as MS. Why have you been diagnosed with "Mixed Connective Tissue Disease"? SS can mimic that too. I'm not saying you don't have 2 auto-immune diseases simultaneously, as that frequently happens, too. But, SS can cause all the same symptoms in its chameleon manifestations. I would ask the doctors to validate why that diagnosis has been made. (The treatments could be quite different if the origin of your symptoms is actually all due to SS.)
Good luck and best wishes. Please keep me posted, if you are so inclined.

 
Old 01-14-2010, 08:04 PM   #4
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Re: seizures anyone?

Hi, I have a HMO right now which limits me to going to only their doctors. We are switching in July to a plan that will allow me to go to other doctors.
I was told I either had a stroke, had a parasite or a malformation.
I had breast implants years ago and that was the beginning of my problems. My former rheumotologist diagnosed me with the mixed connective tissue disease. I was positive on the eye stain test for sjogren's. ( when we dump our current insurance i will return to him) I didn't think I was falling apart too much other than fibromyalgia and reynaud's annoying me. I was able to handle it. However, in 2005 I was hurt at work requiring back and wrist surgery. My symptoms have become worse.
I now have a fatty liver and my liver enzymes have gone up. I don't drink and eat healthy.
I absolutely can not handle being thirsty. I almost panic if I can't get to water and will have severe kidney pain if I don't. Your comment about the brain, makes me wonder if other organs are drying out.
thanks for the information on the lip biopsy. The HMO rheutologist said it hurts alot and may mess up my mouth forever. That is what made me nervous. She said since my ANA was negative, a lip biopsy was the only answer. She wouldn't even take into account my former records. I can save alot of money having it done through her or I can have it done when I switch but it will cost more. I have an appointment with her in a few months and I am going to ask her for more information. The spinal tap was done because I have symptoms like m.s.
"Whoisme" mentioned medications causing seritonin overload. I know nothing about that, but could that be a possibility. For me, my seritonin was too low get results. The doctors blew it off.

 
Old 01-14-2010, 09:57 PM   #5
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surreygal HB User
Re: seizures anyone?

Quote:
Originally Posted by Mel52 View Post
Hi, I have a HMO right now which limits me to going to only their doctors. We are switching in July to a plan that will allow me to go to other doctors.
I was told I either had a stroke, had a parasite or a malformation.
I had breast implants years ago and that was the beginning of my problems. My former rheumotologist diagnosed me with the mixed connective tissue disease. I was positive on the eye stain test for sjogren's. ( when we dump our current insurance i will return to him) I didn't think I was falling apart too much other than fibromyalgia and reynaud's annoying me. I was able to handle it. However, in 2005 I was hurt at work requiring back and wrist surgery. My symptoms have become worse.
I now have a fatty liver and my liver enzymes have gone up. I don't drink and eat healthy.
I absolutely can not handle being thirsty. I almost panic if I can't get to water and will have severe kidney pain if I don't. Your comment about the brain, makes me wonder if other organs are drying out.
thanks for the information on the lip biopsy. The HMO rheutologist said it hurts alot and may mess up my mouth forever. That is what made me nervous. She said since my ANA was negative, a lip biopsy was the only answer. She wouldn't even take into account my former records. I can save alot of money having it done through her or I can have it done when I switch but it will cost more. I have an appointment with her in a few months and I am going to ask her for more information. The spinal tap was done because I have symptoms like m.s.
"Whoisme" mentioned medications causing seritonin overload. I know nothing about that, but could that be a possibility. For me, my seritonin was too low get results. The doctors blew it off.
HI there:
Interesting; we have much in common. I was married to ( and now currently in the process of divorcing) a jerk of a man who convinced me that I needed to get silicone breast implants to make him happy for the rest of our lives together. So breast augmentation was my wedding gift to him in 1989. I wondered at first if at least some of my problems were due to the implants. However, I've since been reassured that this is extremely unlikely. My GP told me that silicone would likely slowly be absorbed and thus benignly excreted from my body if the implants were leaking. Chest ct scans have shown no indication that this is happening. I know the jury is out on whether or not these can cause problems. The class actions law suits in the U.S. involved a type of implant that came later than mine, that also used saline. The silicone/saline implants seemed to be the cause of problems for many women who developed systemic illness. My implants are strictly silicone, fortunately.
Like you again, I also suffer Raynaud's syndrome. In fact, I have been known to look down and see the ends of my fingers lose circulation and go totally white. Conversely, I've also seen them be beet red from too much circulation.
I seem to suffer liver problems from the SS. My liver enzymes are always a bit elevated and my skin is often yellowish in tinge. This is one more reason not to smoke or drink and to live/eat as healthily as possible, to stress my liver minimally.
It may be to your advantage to get a lip biopsy done. My oral medicine specialist who performed mine is essentially a dentist who went further in her training. In Canada, many people use private insurance packages to pay for dental coverage--it is not like our universal medical insurance. I could have gone to an Ear, Nose and Throat specialist doctor to have my lip biopsy performed free of charge, but the ENT I saw was an idiot, had zero bed side skills and frightened me with his description of what the lip biopsy procedure would entail should he perform it. He told me I'd need day surgery and be unconscious for it. My oral medicine specialist squawked at this. She did the procedure with local freezing in a dental chair, and it took less than 10 minutes. I paid a small amount beyond my dental insurance to pay for the procedure. After it was over, I got up and walked out of the dental office feeling fine, but with a frozen mouth. I was completely healed a few days later and I have had absolutely no mouth problems from it. You may wish to see if a dentist can do this procedure for you as easily as mine did. Just a thought...
Blood tests rarely show anything it seems with SS sufferers. Don't let negative results discourage you there. Mine have always shown nothing. The Schirmer test and lip biopsies seem to be more definitive. Good luck and please keep me posted if you're so inclined. Take care.

 
Old 01-15-2010, 09:08 PM   #6
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Re: seizures anyone?

ha, my dentist didn't even know what sjogren's is. Scary. I think my HMO sends me to a general surgeon. I will find out when I see the rheumotologist. I heard ENT doctors often do it.
My husband didn't want me to get implants. I was the one who wanted to buy a bathing suit off the rack and in the same size as the bottom.
I was fine for 3 years and then one day came down with a flu that didn't go away. I had incredible fatigue, hair loss, rashes, fevers, sound sensitivity, brain fog, sever allergies to name a few. It took 5 years to find out the cause. I had a rupture. It didn't show up but I ended up with the first line of doctors who were standing up writing negative things about implants.They suspected I had rupture. I did and the silicone had spread into the center of my chest. Thankfully, I had a top surgeon do reconstruction. In Canada, Dr Pierre Blaise studied failed prothesis including implants. He shared alot of his negative findings with me. I hooked up with alot of women who were very active in getting the information out regarding the links of implants to autoimmune diseases. I read 180 pages of internal documents available through the freedom of information act that shared alot of negative information. I was very involved as a contact person on the west coast for other women and was part of a documentary with Mariette Hartley that never aired.
There is still a lot of disagreements over the safety of implants. My goal was to just have women know they weren't alone if they were having problems, as so many never told anyone they got implants and that women be provided the medical inserts informing them of possible problems so they could make an informed decision. Mission accomplished and I feel I had a very tiny part in that. In my own mind, I am convinced the implants were the cause of my sjogren's symptoms and all the other stuff going on. I was always healthy, rode horses, danced, busy mom, worked etc.
My skin is yellowish too but the doctors don't seem to see it. My girlfriend says it is because I don't go in the sun anymore. I used to love tanning, but I feel sick if I get too hot. I thought that was more of a lupus symptom, but I understand there is primary sjogren's and secondary?

 
Old 01-16-2010, 10:30 AM   #7
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Re: seizures anyone?

Hi again:
I'm glad you weren't coerced into getting plastic surgery. There is nothing wrong with changing one's body, but what I take exception to is coersion tactics, which my husband used to which I am opposed. I'm sorry to hear you've had trouble with your implants. I don't doubt many women have suffered terribly as a result of ruptured implants. I seem to be one of the lucky ones.
It sounds as though you've been very instrumental in raising awareness about this problem. No doubt many women are grateful for the work you've done in this regard.
Like you, the worst of my problems seemed to have been set off by a virus, probably influenza. I had experienced relapsing/remitting MS like symptoms for over a decade, but in Jan 2002 I developed what looked like the flu: fevers, respiratory complaints, flattening fatigue, etc. This lasted a couple of weeks, but I didn't bounce back as usual. This is not too surprising, as the flu can do that to anyone, taking several weeks to really leave one's body. But, my relapsing was becoming very frequent, and each time I seemed to be a bit more debilitated than the previous time. Within a space of about 6 weeks I couldn't walk without holding onto walls. Later, my rheumatologist would refer to the episode as "transverse myelitis". At the time, the neurologists were all scratching their heads because all lab testing revealed nothing.
Like you too, I also had rashes come and go, plus I had alot of chest pain, but just nagging--not crippling. I now suspect that the tissues in my lungs were very dry, and perhaps the pericardium was low on fluid, too. CT scans revealed an enlarged thymus gland (but not hugely large) but a subsequent scan a few months later did not. So, the chameleon-like symptoms caused grief in the diagnosis, no doubt.
I think many SS sufferers get their first bad flareup as a result of a viral infection that sparks the immune system to go completely awry. Your implants may well have played a huge role, and perhaps were entirely responsible for your developing SS. Are you thinking of pursuing compensation for this? I know that is an expensive and difficult task. You will need to unequivocally prove the connection between SS and your implants, which may be very difficult to do. And, you'd be running against "the big boys" like Dow chemical, the makers of the implants, who have virtually unlimited financial resources. Is there a class action law suit focused on the subsequent development of auto-immune diseases among women who were given your type of implant? Might you be able to join that, if so?
Of course, you may not wish to embark upon any sort of civil action regarding this matter. Legal issues are very stressful, and sometimes the benefits just don't outweigh the expenses, including financial, physical and emotional. Regardless, I am very sorry for all your troubles.
Good luck with it all. Take care.

 
Old 01-16-2010, 05:34 PM   #8
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Re: seizures anyone?

yep, mine was like a flu but it didn't go away. I was so fatigued I was afraid I would fall asleep on the freeway. However, I couldn't sleep at night. I was diagnosed with chronic fatigue syndrome 6 months later. For the next 5 years I went from dr to dr trying to find out what was going on with all my symptoms. It wasn't until the media broke with all the stories that I found that right path to knowing what was wrong. After my removal surgery, I improved so much. The fog was gone, I could remember how to spell etc. I had fibromyalgia so I learned to pace myself. I was ok until my injury at work. Since then, the m.s, sjogren's symptoms have knocked me for a loop. I have weird things happen. Do you ever get bladder spasms? a feeling that a noose is around your ribs. I also get jolts and body cramps. I also read sjogren's can be connected to osteroporosis which I now have. geez
As far as a law suit, I settled with them years ago.

 
Old 01-16-2010, 10:34 PM   #9
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Re: seizures anyone?

Hi again:
I'm glad you have all the legal nightmare behind you. That must be a huge weight off your shoulders.
Funny you should mention the "jolts". Back in April of last year I went through 4 days where I felt like my left big toe was regularly being stuck into a light socket. A shock would start there, and course all the way up my leg and into my torso, sending my body into a painful spasm as it went. I was terrified. One day I counted 48 shocks. My GP didn't know what was causing it. Fortunately, it left after those 4 days and has not returned.
I do experience muscle spasms and cramps periodically, but they are nothing like the shocks I had those 4 days. I also suffer intermittently from chorea, which is a tendency to drop things. The number of times my hands have simply let go of things, like hot cups of tea, I can't count. There is no rhyme nor reason for these incidents--they come and go as they please.
My bladder does all kinds of creative things. I can have absolutely no warning, then it suddenly lets go. I really have to watch that right after exercising, like when I return from a bike ride. Maybe sitting on certain nerves numbs them, I don't know. But, I void frequently and have even trained myself to do so at night, to avoid accidents as they can be quite humiliating. Other times I get urgency, where I need to go this second. I can barely get my pants undone in time sometimes.
I'm sorry to hear about the chest/rib pain you experience. You may be having radiating nerve pain originating elsewhere. SS can cause that too. What does your neurologist say about all this?
I hope you find the answers you seek. Take care. I'm wishing you well.

 
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