Twitching all over body, inclusing legs, arms, and hands

[Photoguy21]

I have been suffering for 3 months with twitching in body and arms and legs.  Additionally I have been experiancing pain that moves all over my body including my head.  The pain lasts for 30 sec. to 2 min. then it moves on to another place.  The pain is most like a sharp pain. I have had an MRI of lower spine and head, a chest xray and been tested for Lyme desease, thyroid, wison's.  Can you please help me to decide what to do next?

[Pifrwd82]

To anyone that has been tested for lyme and it has come out negative, please know this...Just because you have a lyme test done and it is negative does NOT mean you are negative for it.  Both kinds of lyme tests (ELISA and Western Blot) can be innacurate.  You MUST find a doctor that knows A LOT about lyme and that can listen to all your symptoms and then make a diagnosis about it then.  I have had major muscle twitches for about a year-and-a-half now.  I was lucky enough to see a doctor who was Lyme literate and who diagnosed me on symptoms.  I have had six different lyme tests and all were negative.  This isn't to scare people into thinking they have Lyme disease, but please be aware that even very good doctors don't know anything about it.  Get second, third and fourth opinions if you have to.  

[Shanghai SD]

Photoguy

Symptoms of Lyme are weird, move around and often hard to explain.

I have had a whole gamma of symptoms

* Twitching - name a muscle or place on my body and it has twitched......weird. Also had Myoclonics.
* Sharp shooting pains into my face
* Gastro Intestinal symptoms - diahrea, IBS, GERD.
* New type of Headaches (clster type), especially radiating from the base of my neck - these dissapeared after thaking antibiotics, after the very 1st day of doxycycline.
* Rash - appeared after 1 month initial symptoms
* Testicual Pain - short lasting but extremely intense.
* Floaters in my vision.....also one or two times strange visual symptoms, i.e. flashes of light in my vision.
* Ear Problems - Eustachian tube dysfunction + Hypercausis
* TMJ problems - hurts to open my jaw and it cracks and pops like the bone is rubbing together.
* Tingling or creepie crawlies in my face/scalp/ears/nose
* Drenching night sweats and whole body tingling

My symptoms were slowly but surely building and getting worse, all within 3 - 4 months of the initial onset. Now after several months antibiotics and I am slowly but surely improving! I have my ups and downs but so glad I started treatment.

All my tests - MRI's, bloodwork etc etc were all Normal......except I finally tested positive for Lyme at one of the reputable labs in the US and diagnosed by a reputable Lyme docotor.

Lyme, despite what some people say, unfortunately is a difficult to diagnose and difficult to understand disease, it is also notoriously also very difficult to treat!

Good luck
Email me privaletly for more info
Shanghai

[Photoguy21]

Thanks Lat67 and ShanghaiSD for the info.  Question... did you all experiance a headache that moves around your head, and the pain only lasts for 30 sec. to 2 ,min?  Also did you experiance pain that moves all over your body, including arms and legs?

[Shanghai SD]

Photoguy,

I am with Lat on this one.

Lyme started and continues mainly as twitching with me, welcome to the twitching club. The doctor here after hearing my symptoms said my symptoms sound like Lyme - sure enough he was right. Unfortunately they have taken away the thread!

Please try and get your blood tested at a reputable place.

You can also email me if you wish.

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[lat67]

Hey,

It is good you are seeing a neuroligist.  I was tested three times here in Canada and all was negative.  The whole lyme thing is very contraversial and frustrating.  Even in the states lyme testing is almost 90% inacurate.  My journey is long but I can tell you I am so glad I was tested with a more accurate system.  There is a lab in California that can test and it breaks your blood down.  Its very confusing to explain but I can assure you a negative test in Lyme does not mean you dont have Lyme disease.  I am not saying that is what you have but I do feel muscle twitching is a big symptom of Lyme.  Most lyme specialists will tell you Fibromyalgia is really Lyme disease.  If you want to explore this more go to lymenet.com.
Good luck and let me know if I can help you in any way.
Lesley

[Photoguy21]

By the way...waht do you mean by asking "properly tested for Lyme?"

[Photoguy21]

Hi I was tested for Lyme and it came back negative twice.  I am seeing a neurologist, and he thinks I might have fibromialga.  But he is not sure.  Any other suggestions?

[lat67]

I to have twitching all over.  I was dx with Lyme disease several months ago.  I would look into being properly tested for lyme disease.  What do the doctors think it is?  Have you see a neuroligist?
Email me if you want any information on Lyme disease.

Lesley

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