Though I've not been told Neuropathy I feel it is. My emg says axonal and motor problems. I now have dropped foot and toes. Balance is terrible and there is pain in my back.
For the first time my parotid glands are acting up! Had a positive lip biopsy years ago and started with a mild sensory neuropathy. They like to see those other antibodies and I just learned something from my Doctor.
Those antibodies can show up at any time. It's not a once you have it you always have it or maybe better said ....you are not born with those ssa and ssb ect. They can show up at any time with inflammation. I was blown away. New to me.
So does anybody else suffer motor problems? Also having incredible back pain and questioning myelopathy.
Kewanee
Hi Kewanee
I'm sorry to hear that you're having such a hard time at the moment.
Quite a few of us here have problems with mobility and balance, as well as pain and tremors/cramping. Some neurologists are happy to ascribe these symptoms to 'Sjogren's syndrome with cns involvement' but others look for answers elsewhere eg with vasculitis. We're often the people who are initially diagnosed with MS which then doesn't fit the usual MS picture.
What treatment are you having at the moment? Are you taking any meds for pain relief? Or Prednisolone for inflammation?
Let us know how things go with you.
Take care - Chickpea
Quote from: Chickpea on June 14, 2009, 02:28:17 PM
Hi Kewanee
I'm sorry to hear that you're having such a hard time at the moment.
Quite a few of us here have problems with mobility and balance, as well as pain and tremors/cramping. Some neurologists are happy to ascribe these symptoms to 'Sjogren's syndrome with cns involvement' but others look for answers elsewhere eg with vasculitis. We're often the people who are initially diagnosed with MS which then doesn't fit the usual MS picture.
What treatment are you having at the moment? Are you taking any meds for pain relief? Or Prednisolone for inflammation?
Let us know how things go with you.
Take care - Chickpea
Hi Chickpea. As it happens I am on 15mg daily of Prednisone. It was prescribed for PMR. Polymyalgia rhuematica. If it's not one thing it's another. Trying to come down it a bit. Oxycodone here and there and it does not help much. Being real careful with the pain meds. So many are habitual.
Thank you for your response.
~Kewanee
Hi Kewanee,
Long time since I had a chance to chat with you. I guess you could say I have motor problems. I'll be trying to walk across the room and all of a sudden my left leg doesn't come with me. It's like someone disconnected the switch that makes it move. No pain, nothing. If I rest back on it, it will come back and I can move again. Really weird. Something else to drive my poor neuro nuts. :-\
Still fighting with "Fred" and learning new steps daily. Falling at least a couple times a week, but that's only due to my stubborness over using my cane in the house. ::) That and my depth perception is shot to heck.
I'm so sorry you are still having such difficult time with walking or moving about. I hope you find something to help you real soon.
Hugs, Pooh
I have had neuropathy forever seems like. It is almost hard to remember when I didn't. Balance is slipping a little more each year. My regime is anodyne therapy daily and pain pills once or twice a day. Ibuprofen is thrown into the mix and I try to never walk in close quarters. Walls are very useful things to walk along side of. Do I trip a lot -- sure do. But as long as I keep going I figure I have won the battle for the day. What started in my feet is now above the ankles and I have begun to feel more tingling in the hands and occassionally feel ripples of tingles in my back.
I suppose the neuropathy is looking for a new neighborhood to check out. I have been through all the meds they have to offer and have had little to no success with them. So I have learned to cope with the issues and grin and bear. If I can have a pain pill to help me sleep and get rest at night, then most of the time I can blank out the issue during the day.
Good family support goes a long way for me. Both my husband and my children understand and I do not have to cover up or make excuses as to why I walk crazy or want to stomp my feet to change the sensations. Hopefully you have some very understanding people in your life that help you to cope.
Pooh has always been one of my inspirations on this site. She is the person who I found that had the same issues that I faced daily and could put humor to the misery. The more you read the more you will find others that will help you walk, even a little crooked, this crazy path we have been given.
Wishing you help for your pain. Take care.
Quote from: Poochie on June 14, 2009, 06:24:25 PM
Hi Kewanee,
Long time since I had a chance to chat with you. I guess you could say I have motor problems. I'll be trying to walk across the room and all of a sudden my left leg doesn't come with me. It's like someone disconnected the switch that makes it move. No pain, nothing. If I rest back on it, it will come back and I can move again. Really weird. Something else to drive my poor neuro nuts. :-\
Still fighting with "Fred" and learning new steps daily. Falling at least a couple times a week, but that's only due to my stubborness over using my cane in the house. ::) That and my depth perception is shot to heck.
I'm so sorry you are still having such difficult time with walking or moving about. I hope you find something to help you real soon.
Hugs, Pooh
Hi Pooh,
It has been a long time.
Have you ever had an emg? They love to give me those it seems. I'm to have another one up the road somewhere. I'd given up on SJS I think. Just didn't get the acceptance by my Rheumy. Now with Parotid problems it seems to be coming together.
What has been going on with you the last year? Any worse?
Falling is so scarey. I'm falling all to easily and my mom died after a fall.
I find using a walker so much better than a cane. Is it time Pooh?
Good to hear from you.
Kewanee
Quote from: salsen on June 14, 2009, 08:58:13 PM
I have had neuropathy forever seems like. It is almost hard to remember when I didn't. Balance is slipping a little more each year. My regime is anodyne therapy daily and pain pills once or twice a day. Ibuprofen is thrown into the mix and I try to never walk in close quarters. Walls are very useful things to walk along side of. Do I trip a lot -- sure do. But as long as I keep going I figure I have won the battle for the day. What started in my feet is now above the ankles and I have begun to feel more tingling in the hands and occassionally feel ripples of tingles in my back.
I suppose the neuropathy is looking for a new neighborhood to check out. I have been through all the meds they have to offer and have had little to no success with them. So I have learned to cope with the issues and grin and bear. If I can have a pain pill to help me sleep and get rest at night, then most of the time I can blank out the issue during the day.
Good family support goes a long way for me. Both my husband and my children understand and I do not have to cover up or make excuses as to why I walk crazy or want to stomp my feet to change the sensations. Hopefully you have some very understanding people in your life that help you to cope.
Pooh has always been one of my inspirations on this site. She is the person who I found that had the same issues that I faced daily and could put humor to the misery. The more you read the more you will find others that will help you walk, even a little crooked, this crazy path we have been given.
Wishing you help for your pain. Take care.
Nice to meet you. Oh stomping helps? I'll have to try that. My newest thing is having a whole hand go numb and then rectify itself. Or, cramping of the hand and fingers getting stuck just to to go back into position. I'll have to google anodyne.
Thanks for your encouragement.
~Kewanee
I've been doing pretty good up til last week. It seems Sjs is beginning to rear it's ugly little head again, only with my heart problem again. As you may or may not remember I had a severe problem with SVT (super ventricular tachycardia), then I had the cardiac ablation and it stopped. A couple years later the atrial chambers got into the act. Last week I saw my cardio and he gave me the news I didn't want to hear. The SVT is starting again.
I sort of knew something was wrong because of the shaking in my chest waking me up every night. I just dismissed it as the AT.
And yes, I'm due another EMG (the 72 hr. one), MRI, MRA and NCS next month. After this last stress test, I just might postpone it another month or two. My "good humor" is beginning to wain with this. :-\
I'm so sorry to hear you are falling also. Before I lost all this weight, I wasn't to concerned with the falling, I had a lot of padding. :D Now it bothers me when I'm suddenly sent on an inspection of dust bunnies. ::)
Take care dear and let us know how you are doing. I've missed you.
Hugs, Pooh
I am new to this site but it definitely intrigues me to see others with the same symptoms. My jaw almost hit the floor when I saw MS being brought up. I've known that I've had Sjogren's since 94 when I could no longer cry and was a usual at the Opthamolgist. Ok...dry eyes...dry mouth. Uncomfortable..YES...debilitating..NO. Sjogren's...BIG DEAL. Well needless to say, it has become bigger than a big deal. I had noticed symptoms and decided that I would finally go to the doctor. I was having radiating pain in my arms and legs and I was beginning to go numb in my feet and hands. Of course, my PCP, sent me to get an MRI to rule out MS. The diagnostic center said that MS should be considered because of lesions on my brain and my age (40). I went to the neurologist and he basically ruled out MS. Now he thinks all my symptoms are related to Sjogrens and neuropathy. Even says the lesions on my brain might be mini-strokes caused by Sjrogrens.
JUST TO MENTION A FEW:
-Pain in arms and legs (my legs feel like I've been on them all day as soon as I get out of bed in the morning)
-Shouder feeling like it needs to pop and then my arm feels heavy
-Numbness in my feet, hands and thigh. I have actually lost the nerve running to the outside of my right foot.
-Constant fatigue (Before I couldnt wait to have a day off from work so I could clean my house. Now if I have a day off, I cant wait to lay in bed and watch TV) I am no longer active
-Cant sleep
-Now I have a pain in my kidney
Any of this sound familiar?
Thanks for listening,
-Lisa
Yes Lisa, it all sounds familiar. Right down to the shoulders "would feel so much better if they would just pop". Also hips, knees, spine, neck, wrists, elbows, etc. And yes, I have a couple lesions on my brain that the neuro thinks were mini strokes brought on by the SJS. And my heart condition, my lung problems, my kidney problems, and walking problems..................and Raynaud's, mitral valve prolapse, ...........................and on and on. >:(
Like I'm sure you have read, some of us only have the dry eyes, dry mouth and skin. While others seem to be chosen to endure all SJS can deal out.
Sjogren's is a great "gift giver" if it "likes" you. Unfortunately, it doesn't give out "return receipts". Bummer! :-\
The best thing to do is find a really good rheumy and go from there. Mine is my go to for everything. He refers me to the ologists he would send his family to, so I know I will be in good hands. He hasn't failed me yet.
Take care and don't lose your sense of humor, it's the best coping mechanism we have.
Hugs, Pooh
After I had my bladder stimulator surgery I suddenly couldn't move my left leg then a day later my right. I ended up in the hospital on prednisone and then in acute rehab to learn to walk again. Eventually it just went away. Now my neuro thinks its from subtle brain inflammation that doesn't show on scans. He thinks it would only show in a biopsy and I'm not about to get a brain biopsy.
I just hope that it won't randomly come back at some point...
Well, a lot of what you all are saying applies to me. However, I have been postponing telling the Rheumie because I am sick of tests. However, I am wondering exactly what can they do? Medicine, physical therapy ? good luck all.
Its interesting to me to read about the balance problems. I've started losing my balance a lot lately but just chalked it up to perhaps my shoes not being tight enough. In the past week or so I've tripped on my house stairs that usually I can climb from floor to floor in the dark. I sort of mentally count the number of steps but lately I've somehow mis-counted and went flying. I see a neurologist on Jul 01 for the first time....I'll add that to my list.
Steve
Hi Lisa
Yes, this all sounds familiar! I also have the balance problems that Steve refers to, and general mobility issues. Then let's add speech issues because of facial/tongue numbness due to one of those mini strokes both you and Pooh mention. Sjogren's is certainly is the 'gift that keeps on giving'!
What treatment are you having? Based on my experience I would suggest that you think very seriously about getting treatment sooner rather than later. My neuro admitted to me himself that he delayed more 'aggressive' treatment because he was over cautious. There are so many things that can be tried to slow the progress of SjS, and meds that help with symptoms.
There's always somebody here who's tried something so there's all sorts of good advice flying around! Don't hesitate to ask.
Take care - Chickpea
I have increasing issues similar to those mentioned as well as:
I am having pins and needles in my feet and calves, arms and hands. The new strange thing that keeps occurring every now and then is my middle finger gets swollen and painful...goes away and then will happen again...over and over
Does anyone experience dizziness???
Thanks,
Deb
Quote from: Poochie on June 15, 2009, 01:25:23 PM
Before I lost all this weight, I wasn't to concerned with the falling, I had a lot of padding. :D
;D :D ;D A good excuse for me NOT to lose weight!
Thanks guys for all the comments. I am supposed to schedule an appt with a rheumotolgist I guess. I've been twice over the years and they always ask me "why are you here", as if I'm making all this up. The neurologist told me that since SJS is a connective tissue disorder that they usually dont treat it unless you are really advanced because the medication lowers your immune system.
As far as dizziness.........OMG. Two days after I had the MRI on my brain, I woke up and the back of my head was numb. I sat up and my world went to spinning and I felt like I was falling down a roller coaster. I guess this is considered vertigo. According to my neurologist, vertigo is not a symptom of SJS. He seems to think its an inner ear infection and will go away. HASNT YET! Then again, he thinks my left hand is aching and going numb due to a minor pinched nerve that will also go away.
I lay down in the evenings because I'm just exhausted but i actually hurt worse when I lay down. My left arm aches and aches and my numb fingers feel like my whole hand has been crushed. I'm beginning to wonder if my neurologist is just pinning all this on SJS because he's lost for answers.
-Lisa
I dont know how you all do it,, I;m ready to take the bridge from all the pain I am in,, I;m sick of sinus infections -(just got off phone with ENT), and the horrible numbness and pain in all the extremitys,, arm pain,, leg pain, not just leg pain,, it feels like the muscles are being torn off the bone, sick of doctors that dont take you seriously,, hate to even go to bed at night,, I know i;m in for another night of coughing, and pain, I cant take the heat,, heck i can barely walk,, a stomach that has pretty much refused to work,, had one doctor tell me last week,, your gallbladder needs to come out,, I;m not about to get cut up wheni can barely function,, and I know thats not a part of the problem,, I have some gull stones,, but that doesnt account for all the symptoms,, I just dont know how you do it,,
I was just sitting here thinking the same thing NAVYDAD. I'm just wondering if this is what I have to look forward to for the rest of my life or will the symptoms come and go? Everyone is so positiive and talks about keeping a sense of humor. I consider myself to be a pretty funny person but I'm just in too much pain at the moment to find humor in anything.
-Lisa
Sjogrens can affect your ears and I've had countless bouts of vertigo. I'd say between it's ability to affect our ears and our brains, Doc. should be more informed.
Maybe check this site out. I'm sure I've seen it here but then I have the book as well.
Kewanee
Hi Kawanee,
I guess I spoke to soon. I woke up Thursday night/Friday morning when I rolled over and thought the world kept going. I tried to sit up because I felt like I was going to heave. Next thing I knew, I hit my hubby's bureau and wound up on the floor with my dog licking my face. Yep, vertigo. Hit me out of blue and with a vengence.
I have no idea what started this round, I wish I could blame it on something or someone ;D (Salsen you started it. :D)
I'm hoping my doctor can give me some Meclizine to knock it down quickly on Wednesday. Until then I'm using my neck vibrator and praying it will let up. Between "Fred" (my PN) and the vertigo, my hubby is having a fine time trying to keep me upright. ::)
Good luck to all of you with this horrible disease. It just never seems to quit giving. :-\
Hugs, Pooh
Oh, all you poor peeps having such awful problems, is so distressing.
What on earth can any of us say that will ease your lot!
This darn complaint is so tough, and seems it's a never ending giver!
I can only I am so sorry for all of you, and pray that soon we can find the miracle that we are all seeking.
Pooh, I am so sorry that the dizziness has reared it's ugly head on you again..
I have had a couple of spells in the past, but it panics me, I pray it stays away ..
Bless you all, Dolly x
Yodeb, not exactly dizziness but whooziness. Not like my head is spinning but swimming, instead. Drives me nuts.
Quote from: Poochie on June 22, 2009, 03:55:03 PM
Hi Kawanee,
I guess I spoke to soon. I woke up Thursday night/Friday morning when I rolled over and thought the world kept going. I tried to sit up because I felt like I was going to heave. Next thing I knew, I hit my hubby's bureau and wound up on the floor with my dog licking my face. Yep, vertigo. Hit me out of blue and with a vengence.
I have no idea what started this round, I wish I could blame it on something or someone ;D (Salsen you started it. :D)
I'm hoping my doctor can give me some Meclizine to knock it down quickly on Wednesday. Until then I'm using my neck vibrator and praying it will let up. Between "Fred" (my PN) and the vertigo, my hubby is having a fine time trying to keep me upright. ::)
Good luck to all of you with this horrible disease. It just never seems to quit giving. :-\
Hugs, Pooh
Pooh it can come and go. One thing you can try is lay on your back on the bed with your head hanging over the edge and move your head slowly from side to side a few times and a couple of times a day. It's awful isn't it?
Yes it can get to you tummy. Sometimes I've had it really whirling the room around really fast and other times just things aren't right, won't focus in and when you turn from side to side in bed you may find it aggravates it. I had to plead to get that medicine and now I have it in the house. Take it easy when this kind of thing happens. Drink alot. Water that is. hehe.
~Kewanee
Pooh
Sorry to hear about the dizzyness. That must be horribe for you, but an ideal opportunity for you little dog to kiss you better.
Kathyx
Thanks for the replies about dizziness. My Rheumy also told me it was NOT related to Sjogrens.. I have been out of work since May 14, 2009 because of it and no one seems to know why. MRI was clear, ear balance study was fine..No fluid in the ears.. The medicine makes me miserable so I don't take it unless if have a really bad episode..
deb
Would he know if it were SJS. It could be for all these Doctors know about it.
I would pursue it if I had that much trouble with it. Your Rheumy is usually the one that can help the most with this.
Deb, isn't that funny? My rheumy INSISTED the wooziness WAS Sjs! Don't you just love it?
When she told me it wasn't Sjogren's, I felt like she was rushing me on to the next subject...I also had a neurologist ask me why I was in his office because he had just looked at the MRI of my brain and said "your brain is fine you don't need to be here". He said but you mind as well come back and we can talk. My husband was with me and could not believe what he was hearing. I have made a request for an evaluation with Dr. Birnbaum at Johns Hopkins.. I hope he will see me. I will keep all posted. If I get to see him, maybe he will let me know what this is or isn't related to..
Sorry to ramble.
Deb
That neuro sounds like a real idiot! There is more to neuro diseases than what would show on the brain. I went to my neuro with a normal brain MRI and he is running lots more tests---nerve conduction studies, anti-striated muscle antibodies--even a carotid artery doppler. ::)