Upper Body Tremors & Jerking

sorry you are going thru this…HUGS!

I had a lot of twitching and feelings like my muscles were humming and about to cramp up (but never did actually cramp). Some of the time my body would tremble (not visibly but I could feel it). Maybe this is a part of your body healing? All the haywire communications our nerves do while still “raw”? I didnt have what you are experiencing and I really am sorry you have to go thru it.

Prayers

Did they discuss the posibility of MS(muscular sclerosis) since you have the lesions on your MRI. Also sounds like you may be having some seizure activity. To my knowledge this doesn’t fit with GBS. You may have had GBS but sounds like you still need an extensive workup for these other problems. I would push my doctors to get a DX or ask for a second opinion if they can’t give you the answers you need. Dr. Shawn

Hi Pdara

No, I haven’t got an answer for you. I can only tell you my experience.

A while after leaving hospital I felt like my head would suddenly jerk – it wasn’t noticeable, just a feeling. Now that was 13 years ago. It stopped happening I didn’t physically shake but I had an urge to stretch my hands, feet and neck into almost imposible positons. I also used to get electrical zings down my arm – and I discovered that it stopped happening when I went on anti-depressants (SSRIs).

When I am fatigued and lie down, my feet and legs get really cold and as they eventually warm up I get twitches in them- doesn’t happen until I lay down. It stops and I am then warm and able to rest. It is interesting that your shaking stops when you lie down.

You mentioned white spots on the brain. I have read of GBS’ers who had the same thing but did not have MS.

By the way, Parkinson’s makes you stiff, it is the drg reatment that makes you shake.

As the shaking doesn’t happen when you lie down, could it not be your body tellng you when you need to rest?

God bless

Good afternoon. I have had GBS since Jan and it hit my feet very bad, I was in the hospital for 5 days getting treated with IVIG. It has been less than 3 months and I have gone from a walker to a cane and now walk on my own some,I still have numbness but can feel it slowley going away.
I go to therpy 3 times a week. My life as yours was brought to a stand still. I learned alot from what others have say. healing is slow but we will heal in time. also they said rest–rest– They are right. My Therpist said a little exersise does more than alot. I turned myself and my GBS over to God and once I did I see inprovements and find myself accepting it and slowley getting better. I am thankful it was caught when it was only in my feet. I read about those that got hit totally and they are looking at a very very long recovery. you & I and a few others that got treated before it took over our bodys are so blessed as we will see recovery alot sooner. I have you in my prayers and thoughts.

Hi!
So sorry to hear of your problems. I hope you get some relief very soon! It is possible to have a mild case of GBS. The drs. had a hard time diagnosing me because of mild, slow onset and symptoms that dragged on long after my hospitalization. I also have “white spots” in my brain. They did not call them lesions. I have not even thought about them again because they were exactly the same on two different MRI’s (a month apart) and the drs. (my first neuro and the neuros at Mayo Clinic) didn’t seem concerned about them. They said I do not have MS. I do remember a day I had about six weeks into my journey where I had buzzing sensations up the back of my spine and into my jaws and the back of my head. It was really upsetting for me. I also have some twitching in my arms and legs — although that is slowly improving. Drs. do their best, but there are so many neurological problems with similar symptoms that they can’t always tell us what is wrong right away…especially when we don’t have “textbook” presentation of our symptoms! Hang in there!!! Let us know how you turn out…..

[QUOTE=pdara]Hi all….I was diagnosed, undiagnosed then diagnosed with GBS about a month ago. Bottom line I don’t think docs know what is wrong with me.
forcing myself to eat etc… yesterday, suddenly i started with this tremoring, jerking, head going back and forth, almost like parkinson’s disease. it has continued for three days, and docs have no idea.
but i am really getting scared that no one seems to know what is going on….. none of my neuro’s or docs have prepared me that this could happen or could be related to GBS. [/QUOTE]

Did they test you for thyroid problems? Specifically TPO antibodies? Look at the your blood test results!

My reason for asking is that tremoring, jerking, head going back and forth is one of my symptoms as well. I have tested very high in TPO antibodies and the coming week I am going to see an endocrinologist. I hope they know what to do about it.

Wish you all well

Dear Pdara

Is it possible to have a mild form of GBS? Yes of course. There are probably a lot of cases of GBS that are never recognised. GBS goes from pins and needles and perhaps a slight weakness at one end of the scale to life support at the other end of the scale. When I first got the pins and needles I was told it “was just a virus”. Had it left me then it would have been ‘a virus’ not ‘GBS’.

Pdara, you said “A group of neuro’s have not told me that this is all “in my head”. ” Is that right? A group of neuo’s DIDN’T tell you it was all in your head? That would make a change. So many times, people have been told it was ‘all in their head’ when in fact it was in their legs, their arms etc.

You’ve been pushing yourself for the last week and have been doing extra PT in the evenings. That is for someone who has weak muscles and wants to build them up. That is not you.

Like a car engine, whilst it is important to keep the engine (your muscles) from seizing up, no matter how powerful the engine is, it will not work without adequte electrical input (your nerves).