Hello All, I am a 37 yr Mother of two kids. 5 yo girl, and 9 yo boy, currently I'm diagnosed with sjogrens and fibro. Taking plaquenel, clonodine, lexapro, fish oil, cranberry, unisom, apple cider vinegar.... The reason for my post is I'm looking for some similarities in my ailments, I would love to hear from everyone!!!!
Starting from the beginning...
*numbness on left side of body from face, tongue, arm, and leg. (Face being constant)
*sensation on that side does not feel the same as the right.
*optic nerve thinning in both eyes. With eye pain with movement. Not glaucoma?? No vision loss
*Brain fog, forgetfulness, loss for words, unable to think quickly.no attention span
*clumsy, lots of missteps
*gland swelling and sore
*fatigue and exhaustion
*extreme excessive sweating with temp change or movement. I sweat from my head and upper chest and back. When I sleep I soak my pj's and hair. Stand up and ittrickles down my legs. Sometimes I am freezing cold and sweating like crazy cant seem to regulate my own temp
*anxiety
I am a hairdresser and these issues r hard to work with to say the least... I have had a lot of testing.3 MRI 's that were clear, cat scans clear, spinal tap clear, eye evoked potential twice were good, eye scans and tests, which showed thinning optic nerve, blood tests pos. ANA. Pos SSA & SSB.
I think that's everything.... please feel free to weigh in, I would love it!! Thanks for listening... Tonton
Three Kris,'s
Hi! I can relate to some of these. I do not have a MD license, but some of your symptoms don't seem totally Sjogren's related. From the time I was 12 or 13yrs old, I have had the left and right side not feeling the same. I have decreased sensitivity on my left side. I also developed a tremor on my right side. They don't feel that the two are related. Around age 32-33yrs old, I started to have tingling you described. Mine has not included my tongue, although, I have issues with tongue movement with my Sjogren's. Sometimes it is because of sores and other times, it is because I am extremely dry and dehydrated which is when I develop the fogginess you describe. I also have severe hypogylcemia and if I don't eat often, I get very slow and sound like I've had a stroke. My facial tingling is constant also. At times, it gets worse when I have issues with the nerves in my face getting agitated from either nodes or ear pain. My father has optic nerve thinning, but he has been diagnosed with macular degeneration.
I don't have an issue with sweating. In fact, I don't sweat in most places anymore. Last weekend I had the dreaded 'boob sweat' but I thought it was awesome considering I have had little to no sweat glands working for years. I do have head sweating along the hairline at night. That is my version of 'drenching night sweats'.
I think there are plenty of people on this site that can relate to the amount of testing, doctor's, and etc with no clear answers to show for it. It is frustrating and when it happens to me I feel like a big waste of time. I end up apologizing to my doctors, med staff, family, etc.
What were they looking for in your MRI and CT scans? Do you have other symptoms that you didn't post about? Just curious. Hope you find some answers but if you don't, the next best thing is someone who says 'I've got that!' It's a small thing, but makes a lot of difference!
Take care, Persephone
I also have fibro and Sjogrens. I do get numbness and Tingling but ..its my legs and feet ..and sometimes I get pins and needles feelings.. I also get muscle cramps (bad ones at times). I def have a FOG problem.. causes me to seem irresponsible ..so I have bought a cell phone with several alarms.. then i can remember Friday Mornings its take the garbage out, doc apts etc.. Otherwise I forget and miss appointments etc..
Gland swelling? I dont think I have that..But My lymph node behind my right ear got Huge and stayed that way for over a month so I finally went to doc and within a month they surgically removed it and found nothing wrong with it? SO I dont know why that happened! lol
Im TOTALLY exhausted..Im tired all the time but at times I feel like I was hit bya truck and feel so Exhausted I MUST lie down that very minute and go to sleep! LOL Im always tired and i don't know if its from the Sjogrens or the Fibro??
I hardly EVER sweat at all.. haven't for years..But lately I have been a bit which is Odd for me as Im not even used to wearing deodorant because I don't normally sweat at all???
I have no optic nerve thinning that I know of. I never heard of that so I must not have it. But I do get migraines lately and I never had them EVER before, not even headaches...
But Your not alone.. I hope you feel better soon!!!!!
Is there any way you could be suffering from Post Traumatic Stress? I have a lot of these symptoms and they tested for everything and it ended up being from PTSD. My MRI's were clean, but I had (and still have) many symptoms of a stroke. It's called conversion disorder.
Thanks for the great input!! PERSEPHONE, I believe they were looking for lesions or damage. Missyloutwo.... I haven't had any trauma to speak of, just hectic life stuff. But you do share these symptoms?? I will do some checking just to see..thanx
Quote from: tonton on June 21, 2012, 10:44:04 AM
*numbness on left side of body from face, tongue, arm, and leg. (Face being constant)
*sensation on that side does not feel the same as the right.
*optic nerve thinning in both eyes. With eye pain with movement. Not glaucoma?? No vision loss
*Brain fog, forgetfulness, loss for words, unable to think quickly.no attention span
*clumsy, lots of missteps
*gland swelling and sore
*fatigue and exhaustion
*extreme excessive sweating with temp change or movement. I sweat from my head and upper chest and back. When I sleep I soak my pj's and hair. Stand up and ittrickles down my legs. Sometimes I am freezing cold and sweating like crazy cant seem to regulate my own temp
*anxiety
I have brain fog, forgetfulness, loss for words, unable to think quickly, no attention span~ (remember the first Ice Age movie when the two rhinos were chasing Sid and got sidetracked with "Oh look! A Dandelion!"??? There's a running joke in my house that when I change from one subject to another when talking my family just says "Oh look! A Dandelion!" and that reminds me that I was in the middle of something and forgot :P)
Clumsy, lots of missteps~ I have had this for 7 months. I can fall over standing still, no kidding. I always fall over to the left, never to the right :o. A few years ago I had a problem with falling down the stairs. My right calf would just 'stop working' as I was stepping down and I would tumble right down the steps.
Fatigue and exhaustion~ so bad I couldn't stay awake more than 4 hours at a time and then needed a 3-4 hour nap. The plaquenil kicked in and I have more energy now but still nowhere near a normal person. If I pretend I'm normal and do all the things a normal person can do in a day, I'm exhausted for days afterward and can't do anything. Joe S. would say to use your spoons wisely (read the Spoon Theory).
Regulating body temp~ I think many of us with autoimmune have issues regulating our body temps. There has been a lot of discussion about it here from time to time. I know I always carry a sweat jacket with me and it's 100 where I'm at :o
Anxiety~ I think since ours is an invisible disease and therefore people can't see it right away, makes us very anxious in general. Having medical professionals and family and friends all thinking you are a liar, and attention seeker, or a hypochondriac can really make us anxious people. Also since once you have one autoimmune disease it's common to have or develop others, we get anxious trying to get diagnosed quickly to prevent the cumulative damage that happens if we catch it too late. Ahhh.....so much anxiety from so many places!
Only the regulating body temp issue, some of the extreme fatigue and exhaustion and some of the brain fog issues are related to my autoimmune diseases. The rest (according to my doctors) are from PTSD. That's why I asked if you suffered from it too.