Oh gosh --- Welcome to the forum. I am terribly sorry you are here though. We will do our best to help give you some guidance and most definitely support. There are several of us that have been here for some time, others of us that are newer...but we are a close group and very supportive of each other.
I have some questions.
What tests have they done? What have they ruled out? Have you seen a Neurologist yet? This most definitely is the direction I'd be going in.
Welcome! Sorry you are going through all of this but nonetheless, welcome! I agree w/ Sidesteps, you should see a neuro. I have some of the same symptoms so I can totally understand what you are feeling. Unfortunately, as you see I am still in limbo with a diagnosis. I can tell you to seek out a caring neuro who is also a good listener, who is also proactive with your care. In other words, do some research first. We have had numerous cases of wasted time, money, and energy dealing with neuros that could give a c*r*a*p!
Welcome to the forum.
I'm glad you came here. I can feel your pain and frustration.
First the bad news:
It seems to be an epidemic in "systemic" neurological/ neuro-degenerative and autoimmune syndromes and diseases. There are millions of sufferers carrying modern medical labels or being totally undiagnosed or even worse- misdiagnosed!
From doctor to doctor and from test to test with no real answers, no cures and very little hope.
Now the good news:
There are things you can do to get to the bottom of this situation and hopefully
reclaim your life.
I would suggest that you look into Pathogenic Mycoplasma and Lyme infections or co-infections, as the vast majority of sufferers of such conditions have them!
Your symptomology generally, conforms with the criteria.
These pathogens hide from the immune system and are very opportunistic.
Excessive stress or other imbalances make one very vulnerable to such invasive and elusive organisms.
Please check posts related to this in the Autoimmune, Lyme and Fibromyalgia communities. This will help you get a better understanding.
Any symptoms can manifest from the above mentioned infections as they are systemic infections, meaning they can attack any system of the body.
There's only a handful of LLMD or Mycoplasma specialists and dealing with any other type of Doctor is a waste of time to my opinion.
Please do careful research and at the same time do whatever it takes
to strengthen the immune system asap!
The earlier the better, as these pathogens have the ability to take over the entire immune system.
A strong immune system is the only thing that can kill these pathogens, as the commonly prescribed antibiotic regiment has only bacteriostatic action.
There are also drug free holistic approaches for anybody that does not want to take the rather extensive treatment with antibiotics
You will probably have many questions after you do the research.
Feel free to post here again and let us know how you're making out.
Stay strong and focused and please do not waste time with doctors that are not knowledgeable and up with the newest research.
Some preliminary tests that are indicative of pathogenic mycoplasma infections are
i am so sorry to hear what's going on with you, and you have joined a group of people who understand the frustration of not having any answers to why your body is no longer your own.
like others have mentioned, i would get yourself to a neurologist as soon as practicable, and also look into lyme infection like nikodicreta suggests as well. the fact that you're having such systemic twitching does seem like it could be the result of an infectious process of some kind.
what kind of testing--if any--has your GP done so far?
please keep us posted. my thoughts are with you.
Thanks to all for your posts and support. I feel as if I have received some good advise. Yes, it is a lonely medical world out here and it sure is great to find others that can understand the daily frustration.
To answer some questions and thoughts that have been posted, here it goes. To sidestep; I have annual MRI's because I was diagnosed with Epilepsy in 2008 (Simple Partial Seizures). When I have a seizure, I have muscle pulling around my eyes, which is my "Aura". Within seconds, I have double vision and my right eye pulls inward and point towards my nose and does not move until it is over, approx 1-2 minutes. This is under control, finally, with Keppra 100 mg 2 times a day. Mt PCP has ordered a Lyme's test as I am an avid camper and used to fish the streams of Michigan. It was Negative. I have a history of low B12, and have taken IM doses bi-monthly for 3 years now. I saw a Rheumatologist last Friday as a follow up from 1.5 years ago (I had a RF of 60 back then and was referred by my PCP). I asked him to check to see if I had any more signs of RA or Fibromyaligia. He did not find any, but was astonished and my recent decline. My right leg (calf and thigh) is 2" smaller and very weakened. He could see the spasms as he examined me, as they never stop no matter what I am doing. He has referred me to 2 Neuros at University of Michigan October 21, 2011. One for my "Seizures" (he thinks these episodes my be a neuromucsular problem also) and the other one specializes in NM diseases. I found out last Friday that I have an EMG scheduled for October 6th.
This has been good news so far. But we all know it can come crashing down around us with the Office Visit that points to no where.
It has been very hard to keep up with work as I am in a very demanding medical field and on my feet for 10 hours 4 days a week. My gait has become noticeable to others and I am afraid to be found out at work. I love my job and the patients that we serve.
Thanks for caring and if I can be a supporter for you, I am here...
This is great advise you have given and I must agree that most of the time OV are C*R*A*P...
Thanks for the encouragement to find the RIGHT neuro. Most of us here probably realize that it is had to find a caring doctor that is willing to listen. I will keep looking until I find one.
I will keep all posted...
Your systemic problem is well received and I have really never thought of Mycoplasma as being possible. I do come in contact with active Mycoplasma infectious agents. Since I am in the health care setting I am in contact with virtually everything!
I will inquire on the web and if time, the neuro's.
Thanks for the heads up and information.
It's hard to be the patient when I'm used to being on the other side of the fence. It does seem odd that these symptoms are so widespread. Maybe I should be seeking help from an Infectious Disease specialist.
I have been blessed with so many that are supportive and truly understand the pain and interruption of a living normal life. So sorry that there are so many here that are living day to day with neuro problems, But yet all are so supportive that it is almost like a breath of fresh air in the misdt of garbage.
I so appreciate you all
thanks for providing some more background on your situation. you have certainly been through it, and i am truly sorry. you sound upbeat though, and your work seems very rewarding. i hope you are able to get some answers and move past this very soon.
i don't know if you are familiar with the politicization of lyme disease diagnosis and treatment, but if you are interested in pursuing that as a possibility, you might want to locate a "lyme literate medical doctor" or LLMD. the lyme test you may not have been enough.
i don't want to push anything on you, but, if you're interested in hearing more about it, you can send me a private message or head to the lyme disease board where there are lots of experienced folks who have navigated their way through diagnosis and treatment.
just wanted to add my $.02.