Something neurological is definitely going on - Sjogren's or MS?

General
1

For several months now, I've been getting this weird involuntary "jerking" in different parts of my body. If I'm sitting or laying down and reading, watching tv, playing on the computer, etc I'll randomly get muscle spasms which cause my arm or leg to jerk on its own. It has been steadily getting worse. It's happening continuously now (if I sit still for a few minutes, it will happen several times), and the jerking is getting stronger. It happens to my hands and feet too. I get it more on my left side. It can happen on either side, but I'm definitely getting it more often on the left.

My rheumatologist didn't seem to think it was related to Sjogren's, but he did say that my primary doctor should refer to me a neurologist. My doctor is more concerned and she is going to refer me to a neurologist. I have an appointment for an EEG tomorrow, in fact.

Now I'm getting some new things that are making me a bit worried that something is definitely going on with my nervous system. About a week ago, I felt a strong jerk while I was standing, for the first time. I was in the living room, and just happened to look at the tv for a second. I was standing by the couch and looking at the tv, and a very strong jerk hit my left arm. It caused my whole arm to jerk away from my body. It scared me. It was the strongest one I had felt, and it was the first time it had happened while I was standing. And now I'm getting this weird feeling of an electric shock going down my arm. I had gotten that once in a while before, but it's happening more often. And a completely new symptom I'm getting is a feeling of like a "pricking" sensation on my fingertips. It usually happens right after I get a jerk, but now it's lingering. And again, it seems more noticeable on my left hand. I do get it on both hands, but more so on the left.

I'm also feeling dizzy a lot and just kind of feel a little bit lightheaded or something. When I look ahead or down, it kind of feels like things are shifting a little back and forth. It's like I'm on a boat. My ears are ringing, and I'm getting a lot of headaches, and I'm starting to have a relapse of fatigue. I've been feeling extremely tired the past few days.

Does anyone have any idea what could be going on? Is the Sjogren's starting to affect my nervous system? I saw my doctor yesterday, and she's beginning to suspect that I could have MS. My grandpa had it. But she's not sure.

I'm 37, and all these things are hitting me which seems like I'm way too young to be getting. I'm just hoping that they will find out something tomorrow.

2

I have had similar experiences. I can be laying down and my whole body will jerk. Or at the computer and finger will start shaking or my right arm will jerk. At this point I have not done anything. I wonder if I should mention it at the last last time I saw my Dr. I am interested in what they tell you.

3

Hi Gateway,

Just when you thought you were starting to feel better! Ah! Sorry to hear this, but glad you are heading to the Neurologist, and hope that you can get some answers. All I can say is to be as patient as you can, as this may take some time to nail down to one thing. The neurologist will probably have his own set of tests in mind to determine the cause.

I'm hoping for a good outcome for you!

SK

4

Prayers and thought to you. Keep us updated when you find out what that is. Peace.

5

I hope you get some answers. I have the jerking deals too. Sometimes it doesn't happen for a few days and then it is non-stop. I get constant eye jerks and sometimes my whole arm jumps and other places too. I have SS and now the doctor says I have fibromyalgia and chronic fatigue. I'm already taking medicine for my thyroid and was told I have Stickler syndrome. I have no idea what is causing what and neither do the doctors. The only thing they can do is prescribe meds that I may or may not be allergic to and that may or may not help. At this point I am only taking the thyroxine and vitamin supplements. Still exhausted and hoping Spring will improve my symptoms. Your are young for all of this. My problems started at 17 when my retinas detached and then at 21 my discs in my back started to rupture. Hang in there. Learn you own body and don't let anyone tell you what you feel. Be confident and my thoughts are with you.

Lucy

6

Gateway,

I am not a SS expert by any means but your jerks and other nero. symptoms don't sound like SS to me, but I guess it's possible. I had an aunt who had MS. The neurologist should have you do an MRI of your brain. If they don't bring it up, you should. MS shows up on the MRI as spots on the brain. The MRI is the best test, I'm aware of, for diagnosing or iliminating MS as the cause of your problems.

I hope you get answers and more importantly a treatment that works.

Josh

7

How are you gateway?

8

I have had a series of neurological symptoms, as well, and I now walk with a cane. My brain scan/MIR showed some lesions, but mine were more consistent with severe migraines/trigeminal neuralgia than ME. My spinal was clear (MRI). Central nervous system involvement cannot be completely ruled out, yet. I have a spinal tap to have done, then a followup. Right now we are in the gathering information stage of things.

9

I have SS related peripheral nerve issues. The rheumy referred me to a neuro who did an mri as SS can cause lesions on the brain. There is a difference between the ones caused by SS and MS though. Your symptoms sound very similar to some of mine but I had the nasty nerve prickles in the hands, feet and legs too. It is beyond weird how many things an AI can affect but ya never know. I hope they get to the bottom of it for you quickly.

10

Hi everyone, I'm sorry it took me so long to reply back. I'm actually doing a little better. The fatigue has eased up, and the jerking has subsided. (Not completely gone, but I'm not getting it quite as often now). I'm still getting a weird tingling feeling and a "pricking" sensation on my fingertips. Also, I still feel a bit dizzy sometimes. I know something is going on neurologically. The symptoms have eased up, but they are sill there. My guess is that either the Sjogren's is starting to affect my nervous system, or I have MS.

This disease is so unpredictable. I feel like I'm on a constant roller coaster ride. I can go for a while where I actually feel pretty good, almost "normal," for several days and then suddenly I'll get hit with horrible fatigue and joint pain and really bad headaches. The Plaquenil has definitely helped...I have a lot more good days than I used to. But I'm beginning to realize that it's going to be like this from now on...up and down. I guess I'll just have to try to go with the flow and take advantage of the good days. It's so weird how things can change, and you become grateful to be able to do things that most people take for granted.

Thanks everyone for your kind thoughts. I did get the EEG test done, but the neurologist who will review the results is on vacation, so it's going to be another couple of weeks or so before I know anything. And then I'll have to talk to my doctor. I'm definitely going to ask them to do an MRI too.

11

I’m also experiencing the jerks, but I’ll get tremors too. Not sure what that is. I have an appointment with my neurologist in July , may need to go earlier.