[Ocean1]

Hi all

Ive been having these symptoms for a year or two now, ever since i started to get poorly, I often find it hard to explain to docs what the actual symptom is :blush: so thought id try you lovely people to see if you can understand what i mean :lol: bare with me :lol: .............

Sometimes i get these odd myclonic twitches in my neck/jaw and sometimes my whole body jumps, if i concentrate really hard i can reduce the twitches but it kind of hurts. Its like my nerves are super sensitive and are firing constantly, its not particularly painful just an odd feeling.
At the same time i get a weakness feeling from my elbows down my arm into my little and ring fingers and the two fingers curl/contract inwards towards my palm, and also in my knees down my legs into my little toes :worried: its an odd feeling again not painful as such, just kind of weak, and i cant stand anyone to touch the areas as it kind of aggravates the feeling more.
This is going to sound odd, but its like...... if you have ever been tickled/laughed :rotfl: loads and you kind of get a tickly/weak feeling and have no strength, its like that. My chest also feels kind of weak and i have to keep taking deep breaths?!?
I get these symptoms for a week or so and then they dissapear and the re-appear again randomly.
Iv had nerve conduction tests on my arms/hands and they all came back fine.

Its a really odd feeling and hard to explain, so sorry if this makes no sense, but its really bothering me especially in my arms and fingers

Thanks for reading and i look forward to any ideas/help

Cheers x x x x x x x x x x x x x x x x x x x x x x x x

 

[Barb G]

I have had some of what you describe, and you describe it quite well. Describe it just like that to a neurologist and they should do an MRI with and without contrast and/or an EEG unless they think the symptoms could be due to the side effects or withdrawal symptoms of one or more drugs in which case they might prescribe something to try to quiet the system first.

Barb

 

[spellbinder]

:wavesmile:hi ocean

i know what you're talking about somewhat. i have involuntary jerking movements. sometimes it very slight, like a jump in my hands or fingers. then there are times when i flay my arms about like a dememted windmill. quite disturbing to say the least. i also will kick, actually kicked the cat off the bed on nite poor thing. i can be watching something on tv and if they punch or hit something, my arms or legs do it too. i've even had my entire body jerk around. i do have cns lupus, my nerves are messed up a bit, my reactions are slow and my reflexes are weak to non exsitant. i drop things too when holding somethings,and my arms and legs go numb even while laying straight. they haven't been able to pin point why i do this just that i have some type of demyelation going on.

wish i could tell you what it is. hopefully someone smarter might be able to answer it for you.

take care
hugs and kisses

 

[Merle]

Hi Ocean

I can relate to your experience, and like Spell Binder, I have CNS involvement.

Usually at night, get the overwhelming desire to twitch. I sometimes think that, with concentration, I can stop myself - but then I get sort of overwhelmed, and twitch anyway!

As regards funny achy feelings in my arms - these I've had almost all my life - and they seem to accompany certain emotions. When I was younger, I assumed that everyone experienced these sensations - along the lines of my arms ache through longing. Now I realize that others don't share them and I've never had the courage to attempt to describe them to a doctor.

If anyone else out there can relate to this achy feeling I would love to know I'm not alone.

Take care

Merle

 

[nicky00]

Just thought this was of interest

http://www.thelupussite.com/forum/archive/index.php/t-71770.html

 

[Merle]

Nicky

Thanks for the link. Having read the various comments, I came to the conclusion that what we are talking about here is Restless Legs Syndrome (which does not only affect the legs) rather than myoclonic jerks. The reason I say this is the movement relieves an irresistible urge / uncomfortable sensation.

Wikipedia has very good entries for both myoclonic jerks (http://en.wikipedia.org/wiki/Myoclonus) and Restless Legs Syndrome (http://en.wikipedia.org/wiki/Restless_legs_syndrome).

Interestingly, the entry for RLS states:
"The most commonly associated medical condition is iron deficiency (specifically blood ferritin below 50µg/L), which accounts for just over 20% of all cases of RLS. Other conditions associated with RLS include varicose vein or venous reflux, folate deficiency, sleep apnea, uremia, diabetes, thyroid disease, peripheral neuropathy, Parkinson's disease and certain auto-immune disorders such as Sjögren's syndrome, celiac disease, and rheumatoid arthritis. ......... In a recent study, RLS was detected in 36% of patients attending a phlebology (vein disease) clinic, compared to 18% in a control group."

Merle