I have something rheumatological going on and I have been diagnosed with Guillain barre 2 times. there seems to be two different neuropathies going on. One is ascending, semetrical with a subacute onset which is peripheral. I am going to a CIDP doctor in december for that. I also had a demylinating lesion in my cervial region that did not contrast baack in 2004.
the other is neither semetrical nor acending and is more insidious. my arms keep falling asleep at night. I am getting bee stings and rain drops. also numb patches I call phantom voids of sensation. I keep getting possitional vertigo (8 xs in two years). that ear goes numb on the inside. also I get brain fog that feels like sinus pressure too. my recent brain MRI was normal.
I had plasma pherisis in october for the peripheral neuropathy which is kind of like dialasis. I also had some arthritis type pain. In the hospital I found out I have an ANA titer of 1:320 which is high. so I had extensive testing done which came out normal. the only thing that was almost possitive but still normal was sjogrens. I was ready to leave rhuematology behind me because it is creepy
One month later before my period I am suffering from tendonitis type pain in my plantars, akeelis, wrists and shoulders along with joint pain. horrible pain that wakes me up at night. I think that the blood washing (plasma pherisis) and the 80 mg of steroids may have masked things and made them appear normal.
I have heard that sjogrens can have symptoms that appear like MS and can even cause central lesions and even cidp.
has anyone heard of primary sjogrens immitating MS?
sjogrens can act like MS?
My mother was never diagnosed officially with Sjogren's but had some features of it. I've often wondered if there is some immune system genetic defect that was passed on and manifested in me as MS.
Raynaud's phenomenon I will never forget - her hands and feet turned purple to gray from cold no matter what she tried. Her mother, my mother, me and my oldest daughter all have had terrible neck pain. My mother had a device prescribed which attached to a doorway in which she'd "hang herself."
I have numb patches that drove me crazy at first as it was felt as itchiness. The skin on right side of my lower leg has only touch sensation. My reflexes are all hyperactive and if anyone touched the bottom of my left foot they would get hurt.
I have a 24/7 what I could only describe as screaming, high pitched sound in my head I am relieved to know I'm not the only one experiencing. Actually it is more like the "noise" you get just before you faint and it is loud enough to block out other sounds. Imagining fainting occurs from reduced oxygen to the brain, I have to wonder if the jugular vein stenosis theory might fit in at least with this symptom.
My arms and hands used to go absolutely numb during sleep only during pregnancy - a time full of hormones, extra weight, water retention and increased blood volume probably making it easier for nerves to get compressed. Maybe steroids could mimic this.
I get strange joint pains for no apparent reason. My left middle finger's middle joint became so sore I had to tape it so it would not move and could heal. That was real fun to walk around in public with.
When I lay down still I can feel muscles all over my body twitching and rushing feeling in my legs.
What you describe as bee stings I feel as if somebody pulled a hair out. If my kids are there they'll ask if something bit me because it makes me jump.
Raynaud's phenomenon I will never forget - her hands and feet turned purple to gray from cold no matter what she tried. Her mother, my mother, me and my oldest daughter all have had terrible neck pain. My mother had a device prescribed which attached to a doorway in which she'd "hang herself."
I have numb patches that drove me crazy at first as it was felt as itchiness. The skin on right side of my lower leg has only touch sensation. My reflexes are all hyperactive and if anyone touched the bottom of my left foot they would get hurt.
I have a 24/7 what I could only describe as screaming, high pitched sound in my head I am relieved to know I'm not the only one experiencing. Actually it is more like the "noise" you get just before you faint and it is loud enough to block out other sounds. Imagining fainting occurs from reduced oxygen to the brain, I have to wonder if the jugular vein stenosis theory might fit in at least with this symptom.
My arms and hands used to go absolutely numb during sleep only during pregnancy - a time full of hormones, extra weight, water retention and increased blood volume probably making it easier for nerves to get compressed. Maybe steroids could mimic this.
I get strange joint pains for no apparent reason. My left middle finger's middle joint became so sore I had to tape it so it would not move and could heal. That was real fun to walk around in public with.
When I lay down still I can feel muscles all over my body twitching and rushing feeling in my legs.
What you describe as bee stings I feel as if somebody pulled a hair out. If my kids are there they'll ask if something bit me because it makes me jump.
Wendigo, that makes me wonder too as my dad has been dx with Sjogrens. I think his only symptoms are dry mouth and eyes.
The numb patches you described - I had that 6 yrs ago (but not itchy or painful) and then it went away except for my left cheek has been slightly numb since. The reflexes on my left side are also hyperactive and my left foot is super tickleish.
But I've fainted lots of times (hit my funnybone and I go down) and never had noise in my head before.
The numb patches you described - I had that 6 yrs ago (but not itchy or painful) and then it went away except for my left cheek has been slightly numb since. The reflexes on my left side are also hyperactive and my left foot is super tickleish.
But I've fainted lots of times (hit my funnybone and I go down) and never had noise in my head before.
It takes some mental gymnastics just to get a sock on my left foot. During the initial workup by my first neurologist I had to walk first on my heels down the hall and then on my toes. I couldn't help but giggle and laugh my way through these and the neurologist, who was very young, looked at me with a straight face and asked, "Do you laugh and giggle like this often?" I guess MS can cause personality changes, which is what she was trying to ascertain, but it was hard not to wonder based on her reaction if I was going insane on top of all the other symptoms. Now I know 150% that if SHE had felt what I did during those tests she would appear to be a loon too.Just_Me wrote:Wendigo, that makes me wonder too as my dad has been dx with Sjogrens. I think his only symptoms are dry mouth and eyes.
The numb patches you described - I had that 6 yrs ago (but not itchy or painful) and then it went away except for my left cheek has been slightly numb since. The reflexes on my left side are also hyperactive and my left foot is super tickleish.
But I've fainted lots of times (hit my funnybone and I go down) and never had noise in my head before.
I think the scratching of the numb areas was in part trying to bring some sensation back to the area, even if it was pain. The back patch numbness drove me nuts - it was a deep itch that would go away for a few minutes after scratching and then come back. It has since just gone dead. I get a lot of pains which are probably pulled muscles and use the Icy-Hot patches. Often I will think I'm getting another numb spot and catch myself in a mirror and realize I'd just forgotten to take off a pain patch...whew!
I was going to say that's funny about your funny bone but it's not funny at all. There is nothing you can do for the pain. I've passed out from pain before, too.
I am so sorry that you are having these issues. it can be frustrating to chase a diagnosis.
Let me tell you that there are more than 100 diseases that can mimic MS symptoms, and yes shoghrens is one of them. The positive ANA titer and the rhuemy stuff are strongly leading towards a suspiciion of sjoghrens. Have they done a lip biopsy on you? that is the difinitive test for it.
Some of the other stuff that can "mimic" MS and a positive ANA is lyme, or lupus. Make sure they send your lyme test out to the special lab. more than 75% of the normal labs that routinly screen for it, have false positives in the general population. there is a special screening lab that deals in highly sensitive testing. I would search out Lyme sites and ask their opinions on which lab to send your blood to.
Lupus would also land you in the Rhuemy chair. its a disease that can closely mimic MS including the lesions. It too is another one of those diseases that you get the lable for after loads of ruling out for other stuff. One of the characteristics of Lupus in a redish area on the face/cheeks that can spread across the cheek bones. it can spread across both sides of the face and if you step back from the mirror it would look like the shadow of a butterfly sitting on your face, spanning the bridge of your nose/cheeks. The Lupus.org sites have many good pics of what this looks like.
lastly sjoghrens can be 2ndary to MS. I know because I have it. The primary sx are dry mouth, dry eyes, and dry skin. its funny because I have a moist mouth, but my eyes are dry enough that i needed plugs to prevent any moisture from escaping. My lip biopsy was negative, which means its a 2ndary system in my MS dx. The treatments for Sjoghrens is about the same as for lupus. Steroids! Great oral/mucousal hygiene, and tons of wetting agents, like drops or gels for eyes to keep them protected.
It sounds like you already have a good Rhuemy working on the case. Make sure they test a Vit D and B12 level on you. Those are two things that are easily detected, and easily missed, and easily corrected. Feel better soon.
Let me tell you that there are more than 100 diseases that can mimic MS symptoms, and yes shoghrens is one of them. The positive ANA titer and the rhuemy stuff are strongly leading towards a suspiciion of sjoghrens. Have they done a lip biopsy on you? that is the difinitive test for it.
Some of the other stuff that can "mimic" MS and a positive ANA is lyme, or lupus. Make sure they send your lyme test out to the special lab. more than 75% of the normal labs that routinly screen for it, have false positives in the general population. there is a special screening lab that deals in highly sensitive testing. I would search out Lyme sites and ask their opinions on which lab to send your blood to.
Lupus would also land you in the Rhuemy chair. its a disease that can closely mimic MS including the lesions. It too is another one of those diseases that you get the lable for after loads of ruling out for other stuff. One of the characteristics of Lupus in a redish area on the face/cheeks that can spread across the cheek bones. it can spread across both sides of the face and if you step back from the mirror it would look like the shadow of a butterfly sitting on your face, spanning the bridge of your nose/cheeks. The Lupus.org sites have many good pics of what this looks like.
lastly sjoghrens can be 2ndary to MS. I know because I have it. The primary sx are dry mouth, dry eyes, and dry skin. its funny because I have a moist mouth, but my eyes are dry enough that i needed plugs to prevent any moisture from escaping. My lip biopsy was negative, which means its a 2ndary system in my MS dx. The treatments for Sjoghrens is about the same as for lupus. Steroids! Great oral/mucousal hygiene, and tons of wetting agents, like drops or gels for eyes to keep them protected.
It sounds like you already have a good Rhuemy working on the case. Make sure they test a Vit D and B12 level on you. Those are two things that are easily detected, and easily missed, and easily corrected. Feel better soon.