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Discussion Starter #1
Hi

Can anyone help?

I have an unexplained transient right sided weakness, which is a real pain but i have learned to accept it. I also get strange jerks on the right side mainly in my right arm sometimes involving neck/head on right side. It tends to happen first thing in morning and in evening, especially when i am tired. I get this feeling and a funny sensation in tongue which means that i know it is going to happen. My gp called it myoclonic jerks. I hate it and tend not to leave the house when it is bad. It tends to come on for a few days then leave for a while. The weakness lasted for 6 months the first time thern comes and goes for anything from a few hours up to 6 months. It can vary in severity during day. I have no idea why, heat, cold, tiredness, and exercise all aggravate it. I also have episodes of slow slurred speech which can coincide with the jerking, this can last anything from a few minutes up to a few days.

London Bridge doc said it was neuro symptoms and told my hubby that the lupus had affected my brain. The last few months my deja vu has got so bad i cant tell what is a real memory and what is deja vu, it is really causing me problems. I feel I am losing the plot. :sad: Lately I have had 2 episodes where the jerking was so bad it was like having a seizure. It only lasted about a minute, but was so violent and left me feeling so drained and ill. I have spoke to gp who feels that my symptoms are worsening, and noted how i did well on steroids but that i couldnt stay on them. They said to call them if i have anymore, but that it wasnt a seizure as i was aware of what was happening. I am ok with this, its just it was so frightening as i couldnt stop what was happening. In evening when i jerk and twitch i can hold my arm to stop it, but this was different, i was unable to move or even speak during it.

Sorry for long post. Does anyone have similar? Does anyone have any ideas what causes this? I feel as if i am going mad, everyone keeps telling me it is a real illness, but i find it so hard. No one else has weird things like this. I dont understand what is happening to my body and i am the kind of person that needs to. :(

Thank you for reading if you managed to get this far! :lol: If anyone has ideas it would help as i am driving hubby mad :eek:

Deb
 

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Pollianna
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485 Posts
Deb, I have the jerks in my head. One day years ago I remember I was just sat there and my head jerkded for ages. Now when i am tired suddenly it will just jerk once every few minutes. weird eah? I have lots of CNS symptoms too. I also have problems writing and get the letters mixed up at times. i will write and nad for eg. the doc asked me to put my thumb and my pinkies together and i did the thumb and forefinger , couldn't for the life of me work out what she was waiting for till she told me....it's in my brain too

I also had jerks in my fingers, showed one doc who looked at me as if i was doing it on purpose :eek:

Your not weird or mental . They don't know how to eradicate every detail as were all so different. you will get there
 

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The Other Illinois Tammy
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1,193 Posts
Deb,
I am so sorry that you are having these problems. I have not had anything like this happen to me but I do get the like muscle spacs. Is there anyway your doctor would order a cat scan or a MRI to see if there is anything going on there? When you feel one of these coming on have you ever just went and laid down till it passes, I mean lay completely still? When this passes make a note of what you were doing, how long it lasted, what you felt like (strange feeling or tastes), what parts of you body was effected by it, and what was happening for you to know you were going to have one come on. Take these records over a small amount of time to the doctor and see what they think and what they can do to help you with this. Let me know how you are doing please.
 

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Registered
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that sounds a lot like what I was having... I usually feel drained but not ill after my seizures (focal) and then I have something different that I feel with the twitches... mine were linked to ferritin deficiency, apparently, though right now my levels are lower than they were with the twitches and losing my ability to speak and I'm totally fine. Well.... :lol: I'm not twitching much or forgetting how to speak!

Good luck, hope you get some answers soon.
 

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Administrator
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Hi Deb,

I have gotten something similar when I first stand up. The knees lock and my legs shake violently while the upper body goes along for the ride. During that time I am unable to move out of that position. They do pass after a bit, but can be stopped sooner if someone can get me off my feet.

The episodes are more frequent when the disease is more active. My doctor has me keep track of the number of incidences. When they get too frequent the doctor makes a medication adjustment.

Take care,
Lazylegs
 

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Discussion Starter #7
Thanks all for your replies. I have an appt with my local rheumie on 18th march, I am going to mention it then. I think there are a few things that could be causing it, and I need to check which it could be. Hopefully he will listen, and maybe even give me an answer!!!!!

Deb
 
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