jerky

[zara]

Do any of you get kind of jerky? (and I'm not talking about beef here :p )

What helped?

[peonyprincess]

I love the spicy jerky tha you find in the checkout at the grocery store.......oh, wait, you are talking about something else here, my bad.............

I experience the jerky movements as well. It seems that they are not an every day occurence but rather hit and miss. I do take Neurontin 400mg tid, which helps, but doesn't always fix. When it does seem to "flare up", I take an extra dose of Neurontin (with docs approval) until it passes. Sometimes it is a day or two and sometimes, it is a little more frequent. Of course I use it to my advantage.......when my hubby starts snoring really bad, I give him a "nudge" and then when he wakes up and looks a little perturbed, I apologize and tell him that I am a little jerky and that my meds have yet to kick in:wink2: .

Best to talk to your doc if you haven't already done so. It may be something that he would want to investigate further.


Nancy

[lupie98]

That is funny, Nancy! I will have to try that one. I do get jerky. I started off with tremors that led me to a seizure. I am on dialatin for that so now I do have jerks now and than. My hands constantly shake also. IT is so bad that people notice. I don't know if it is a side effect from meds. or just part of the lupus. I need to ask my dr. It is a little embarressing all the time.

[crm1209]

Some specific muscle movements are always jerky -- more like "ratchety", but others tend to fluctuate, sometimes even disappearing for periods of time. For quite a while I had a visible tremor most of the time (mostly my hands were shaking; one doc thought it was essential tremor, other docs don't think so), but that seems to have calmed down and it only appears on occasion. I also have random (and some not-so-random) fasciculations and in the past sometimes my arm would just jump all on its own. The most recent symptom is that when my face or mouth is in certain positions, my chin and lower lip quiver. That must look lovely!

Klonopin helped a lot with the hand tremors, but I haven't needed to take it in quite a while. Nothing seems to make the ratchety muscle movements disappear, and I've had them for over 3 years. Caffeine makes it all worse, so I'm careful about how much coffee I drink.

Renee

[zara]

I have a tremor too. That's good that there are medications I could take now and then when it is troublesome. When I get worn out its worse and other people think I'm a nervous nelly I think.

Nancy, you crack me up! I'm going to use that excuse. :rotfl:

Thanks y'all. I see my dr on Monday and will bring it up then.

[zara]

Renee, nothing made those ratchety movements disappear! Does anything calm them for you?

[crm1209]

Zara,
No, nothing makes the jerky movements go away, but they only happen when I move certain muscle groups in certain ways. For example, if I shrug my shoulders, :shrug: they move smoothly up, but jerky, or ratchety, on the way down. Also when I move my hand upward at the wrist. It's jerky going up, smooth going down. Other muscles do the same thing, but not all of them, and I'm used to it now. Most of the time others don't notice it so it doesn't bother me much any more. It was frightening at first, though. The docs just scratch their heads at it.

Any ideas about yours and what's causing them? What are they like?

Renee

[tbunny1]

:hyper: :hyper: :hyper: Who me twitch?

Early on in my disease process, prior to diagnosis, the docs thought I had MS due to my tremors and "bouncing" index finger with a mind of it's own. I have some other really strange movements, ticks and tremors intermittently - my second nuero thought it was necessary tremor as well. Later on, I was diagnosed with CNS/NP lupus, and we thought that was the cause of all this. Now I have been diagnosed with APS. Both CNS lupus and APS can cause chorea, a type of movement disorder. No one has really figured out what is what yet (that would be something new, now wouldn't it!).

Here is a paragraph from an article on APS by Dr. Graham Hughes at St. Thomas' Hospital that I have saved regarding this:

Chorea been strongly linked to the presence of aPL and does not differ from chorea encountered with rheumatic fever (Sydenhan´s) or the inherited form (Huntington's). It may antedate other manifestations or be seen during the course of the APS. The chorea may appear without any obvious precipitating factors or be induced by oral contraceptives (10 (http://www.rheuma21st.com/archives/cutting_edge_antiphospholipid2006.html#10#10)). In a review of 50 cases, Cervera et al. (11 (http://www.rheuma21st.com/archives/cutting_edge_antiphospholipid2006.html#11#11)) found that one episode of chorea was seen in 66% of the patients, while in 34% it was recurrent. Oral contraceptive-induced chorea, chorea gravidarium and post-partum chorea occurred in 2-6% of patients. It was seen bilaterally or unilaterally; occasionally commenced on one side, to reappear on the other side within weeks to months .Computed tomography scanning is usually normal but infarcts outside the basal ganglia themselves might be seen. MRI findings were only reported in 13 of the 50 cases and infarcts in the caudate nuclei were only seen in 3. Steroids, haloperidol, aspirin and anticoagulation were used in several patients and all patients recovered, but the time taken in recovery varied from days to as long as a few months. Some authors have suggested that reversible immune mediated responses, hormonally influenced in some, is the most likely pathogenesis of chorea, rather than a vascular hypothesis with thrombosis and infarction occurring. Binding of autoantibodies to striatal interneurons may cause hypermetabolic dysfunction of these cells. Striatal hypermetabolism has in fact been demonstrated .A significant number of patients who had presented with chorea subsequently developed cerebral infarctions (10 (http://www.rheuma21st.com/archives/cutting_edge_antiphospholipid2006.html#10#10)).
10) 10.Asherson RA, Hughes GRV. Antiphospholipid antibodies and chorea. J. Rheumatol. 1988: 15: 377-379

For anyone interested, here is a link to explain what chorea is

http://www.ninds.nih.gov/disorders/chorea/chorea.htm

Thank you to this sight for letting us all learn about this disease from one another!

[zara]

Renee, I'm not sure why I get this. I think maybe it's due to being hyperreflexive combined with fatigue or stress. My head will not turn smoothly, for instance. My movements in general are just not smooth and not completely intentional. I had a lot going on yesterday so it was bothering me. Today was less stressful because I had less going on, so it wasn't as much of a problem.

[zara]

Thanks Tracy! :hyper: hehe, good smiley too.

Basal ganglia, binding autoantibodies, hypermetabolic dysfunctions....no wonder we pay our doctors tons of money for their expertise. I'll look up more info on Chorea.

What helped you most, if anything?

[hlp63]

hi there....I noticed too that my hands are twitching or have the shakes, like I have been on the grog (booze) too much! My face also twitches, the eyebrows especially, so I resemble Dr Spock ocassionally. My right leg also twitches madly at night time, never my left one..always the right. Spoke to my doctor...he said it could be a lack of magnesium in the body and put me onto supplements of magnesium. IT WORKED 400mg a day and I havent had a twitch yet....even controlled the shakes of my hands, which was good because I couldnt even hold a cup of coffee without losing it everywhere!
Helen

[zara]

That's encouraging, Helen! Thanks. Hopefully mine will go away like that. I know everyone is different, but it's something my dr can check.

[halfpintfl]

Hi Zara, My Rheumy RX Methadone for my pain, I thought it was for alcholics, he said no, that they are using it more and more for pain and finding out that it works. It really works for me. I do hope that you find something that helps, soon. Be well

[MichelleAnn]

I am very jerky, tremors, myotonia in my arms. My neurolgist diagnosis for me is encephalomyopathy. Inflammation of the brain and muscles. Some days my head jerks or shakes too. My hands are so clumbsy I cant hold anything. forget painting my own finger or tie nails or cutting them. I can seem to get the clippers or paint on my nails. The more I try to perfect my movements the worse I am. I use coffee mugs or glasses with handles on them so I can lock my fingers in the handle as I dropped many glasses. My tremors increasing is one of my first signs of a Flare-Up. Hope you feel better soon.
MichelleAnn



(Newly diagnosed with Systemic Lupus and Sjogrens, but had symptoms severe for 3 years)