Although I cannot make a diagnosis without seeing you, your symptoms are difficult to localize to one area of the nervous system
A generalized small fiber neuropathy (the small nerve fibers that sense pain and temperature) would be one possible cause. This condition can result in a normal neurological examination and MRI and requires specialized testing such as a superficial skin biopsy to look for nerve fiber density or other abnormalities (this is a relatively new test that is more sensitive than other tests to date). Early diabetes or an excess of amyloid protein are the most common causes. Other potential causes such as electrolyte abnormalities, side effects of medications or other forms of neuropathy would need to be excluded also as they seem to have done to a certain extent.
It would be unusual though to have a latent period from 1996 to 2004, I cannot explain this from a purely neurological perspective.
Another test which may give a clue to how serious these symptoms might be is called Quantitative Sensory Testing. These tests may not be available at your general neurologist, so a second opinion at a larger center might be a good idea.
I am recently recovering from 9 months spent in bed due to severe back and neck pain that affected my entire body. I also experienced numbness and tingling in both arms, hands, legs, face, twitching, "electric" felings, etc. I could hardly get out of bed let alone work or function as a normal human being. And there was no injury or specific event to expalin this. MRI - normal X-ray - normal I went to Stanford, Knee and Sports Medicine, saw regualar chiropractors, neurologist, etc. NO ONE had any solutions nor explanations. One "specialist" told me it was just the way I was made and that there was nothing I could do. I was taking oxycontin just to get out of bed and was pretty desperate. I am 25 years old and the prospect of being crippled for the rest of my life was staggering. Finally the Lord and my faithful family practioner sent me to an old retired gentleman who works only twice a week. He specializes in UPPER CERVICAL SPECIFIC CHIROPRACTIC. This is basically centered around the atlas or the bone that rests on top of the spine and on which the skull rests. It is the only bone in the spine that can move sideways and if it gets out of alignment, it can place pressure on the spinal cord and block sensory and motor nerves. In addition it also causes the body to "grow" crooked causing an array of other symptoms: sinus pressure, eye problems, upset stomach, etc. Think about it, if the first bone in your spine is off, it will effect your entire body. Your brain is your central computer so to speak and if it can't send and receive proper signals, it cannot function properly. Your atlas can only be seen with very specific x-rays that otherwise are never done and so often goes unnoticed. The only way your atlas can be put back into place is with a specific machine which uses a spring and air pressure (as much as 100 psi !) to push the bone back into place. Regular chiropractic "popping" won't do it and can do worse damage. Most chiropractors don't do this because once the bone is realigned, the muscles are retrained and the nerves have repaired themselves (3 months at most)I no longer even need to be seen! No tune ups every three months, no nothing unless I somehow bang it out again. And so no one will be making much money on me at all. Sadly many other chiropractors this guy has shared this approach with say he does see patients enough nor make enough money for them to even consider treating people this way.
The majority of my pain was in my back not my neck and at first I was a little suspicious. But I'll tell you what, when he popped my atlas back in, the pain was almost completely gone in 30 minutes! Because the nerves take up to 80 days to repair themselves, and due to the fact that my I spent most of my life growing crooked, the pain came back quickly and at the moment is a little worse than before. But I feel right in my "bones". The muscles of my entire body have to be retrained to my new "sraightness" and since my nerves were blocked for so long, many things hurt now that never hurt before. Sort of a delayed response thing. The channels are now clear so stuff from years ago is finally getting through. I'll say it again in many ways I now feel worse but it is only because I am truly getting better. In a few months I should be completely better and unless I knock my atlas out (I fell out of a tree when I was four years old), there is no need after a few months to keep seeing any doctors period. This can vary from person to person and your recovery depends on you age and the length of time its been out of place but at the least its better than nothing. This gentleman told me stories of 80+ year old people not being able to move an arm or barely able to walk, go out of his office flapping there arms and walking in a full stride. It sounds silly but I sat on my bed for days and just turned my head from side to side. I can not recall ever being able to move this freely. The whole premise of this type of procedure is to remove the obstructions in the body to allow the body to heal itself. No fancy surgeries or mental hocus pocus, just plain old common sense: a straight spine. As I said regular chiropratic cannot correct this and may at best give temporary relief. Even surgery would not help. "Normal" is feeling no pain. "Normal" means no tingling or numbness. And soon, I will finally be normal again. Please consider this. Find someone who does this type of thing. If I had to travel across the country to have this done, it would be worth it and I have no money at all. Here is a website with more info. www.erinelster.com/upper_cervical_care.html PLEASE consider this. You may have other problems but its worth a shot. Share this with others it has changed me from crippled to hopefull. And soon I will be well...
Awesome! Thank you for sharing. I read this forum off and on and usually leave it feeling such desperation for the hurting people that post here and do not get better nor do they know where to turn but tonight I will sign off (Lord willing) feeling elated for you and hoping others listen to you. God bless kw
(sorry about the above...) just wanted to post that I also have constant tingling that has persisted for an entire year. Also had the same tests as you -- all negative. Also had (very painful)EMG, also negative. Saw a neurologist many times but no answers. Neurologist thought my symptoms would just go away, but they haven't. I feel fortunate that the tingling (Parasthesia)(or what it really feels like is that my nerves are all at the very edges of my skin--almost feels like burning or like scalding water is running through me)...hasn't interfered with how I live my life. I don't have any answers for you but I know I felt better reading this forum and realizing I was not the only person with such strange symptoms. I know for me what is hardest is the concern about what this may be doing to my body over the long haul, but since I can't get an answer on the cause, it does me no good to worry. My personal feeling is that it's some weird virus that has attacked the spine and I do believe it will one day go away. I'm trying to change my diet to eat healthier and cut out as much caffeine as I can stand to, and to exercise more, but don't really know if that will help.
Good luck, and if you do get any answers, please remember to share them with the rest of us.
Hi everyone. This is the most active chat spot. I have tried the Upper Cervical chiropractic, too. yes, it helped with sleep, hip pain, and all kinds of things. But I didn't hold - had to keep going back. I felt it was very safe. The twisting and jerking has made me worse - even in experienced hands.
I have been at the NLM/ Gateway site reading for years tryying to figure out all of my problems - tingling and every other kind of sensation, bowel /bladder issues, hearing, visual, etc etc. I learned about some conditions called
myelomalacia and adult tethered spinal cord. I have one abstract ( Geelen JA , a Dutch journal called Ned Tijdschr
Genneeskd) that reports on 4 patients whose most prominent complaint was tingling in the hands. The diagnosis : myelomalacia, little bubbles ( sometimes less than 1 mm) in the spinal cord. What causes this? often a tethered spinal cord. I have been finally diagnosed with this.
A TC can be acquired from a injury to the spinal column, or from spinal injections or infections. Also , people can can be born with it and not know it until some injury ( or specific posture or growth spurt) causes traction on the spinal cord.
The TC can be part of the inheritance of spina bifida occulta.
According to the Spina Bifida Association of America, SBO is
inherited by 10 to 20% of the population ! it has been assumed to be benign, and incidental - but NOT for me. And what a struggle I had getting diagnosed. Is tethered cord the source of many odd, unexplained neurological problems ? I have had migraines, asthma, bladder/bowel dysfunction, tingling and many weird sensations in the legs, fascial tingling, 'jerking' tongue, painful ears, sensitive teeth, burning feet, etc. etc. etc. I have scoliosis and deformed feet. I have craniofascial distortion, with jaw misalignment and a deviated septum. I have evidence from the literature that links all of this to the inheritance of SBO and tethered cord. Maybe it is quite common ??
And I thank you. I don't know if what was done to me can help everyone but the change I feel in EVERY part of my body, from headaches to breathing to eye sight to hearing to pain to movement....EVERYTHING. God is good to me! And I know as well how hard it is to hear of others who are suffering so terribly. But Jesus loves me this I know... He loves others as well. I just wish more people would submit to Him and be saved. God is sovereign and He does have a plan. And even though He is NOT the author of sin or pain or any such horrible things, He can use all these and more to touch the hearts of those who seek Him. "Not all things are of God, but all things can be used by Him for good."
Right before I was placed on the road to recovery, I finally got to the point where I had accepted that I may be crippled for the rest of my life. I did not even pray for healing anymore. I simply prayed that God would use me to accomplish His will in whatever way He saw fit. If that were to show the world the joy of knowing Him even in the face of great pain, than so be it. My will and dreams do not matter, I just want to serve Him and be faithful to His Word and His Commandments and to His son, Jesus Christ my Lord. I hope that others will seek out the procedure that helped me as it really can help so many various ailments. But most importantly, I pray they will seek Him, as only He has the power to save their souls.
P.S. A comforting thought: Adults and those who can understand their sinful state must repent and accept Christ as their Lord and Saviour, but when a child dies, for them it is instant Heaven!
I do feel that I am definetely fortunate to not need much of any adjustments so far but I have also been doing Pilates excercises and lots of stretching. Both have helped immensely. Its kind of a trendy thing these days but Joseph Pilates (the founder) developed it for himself and others with many physical ailments. It was also the ONLY thing my body tolerated when I was really hurting. God designed our bodies for movement and most of us don't get enough excercise. Combine that with injuries and other problems and... Also, since I spent 20 plus years with a curved spine, things will take time to heal. Be patient and don't lose heart. Your mental health does effect your physical health and I know from experience that if I get depressed or feel hopeless, the pain and everything else gets worse. And thats not just in my head but it really is worse. Or minds control our bodies so if thats not functioning properly than how can I expect anything else to work right? Being a Bible believing born again Christian I look forward to spending an eternity with God in Heaven where there will be no more crying or pain or anything else that causes even the smallest amount of discomfort. This world is cursed and is NOT they way God intended us to live. "For all have sinned and fall short of the glory of God." So, sin has tainted and twisted our lives into something that God did not intend. He loves us enough to give us a choice and not be robots who have no will. And sadly, we have not chosen well. I view this life as a "try-out", a trial in which God sees who is real friends and children are...
Anyway, correct posture (central to Pilates) seems to be a crucial part of physical health. After feeling what it really is like to have a straight spine, I realise how often I was moving incorrectly in just about everything I do. Driving, sitting, sleeping, walking; everything, not just standing. Bad posture seemed to promote injuries in me and could have led to worse things. The muscles in my body due tend to try to pull everything back to where they were (not good), and so it takes constant thought and effort to "straighten up"! It will probably take awhile to build up the muscle memory to stay straight but mentally I now have the motivation to put forth the effort. In addition, I've noticed the longer I spend sitting or laying down with incorrect posture, the worse I feel. Even gravity could play a role in that as quite a lot of force is constantly exerted on a body that is not distributing its weight properly due to it not being positioned properly. Over time this can lead to all sorts of problems. A good bed is important as well. Spending even a few hours in a wrong position can have bad side effects.
I have no doubt that even one small problem in any are of the body can effect the entire body. Will a boat float with even a small hole? Maybe for awhile but not for long. And I know many think that talk of God is stupid or even inapropriate, but He is real and understanding what he intended us humans to do (work!) has helped me to realise that even though I love computers and reading books, I still need to stay active. He designed our bodies for movement and to consume REAL food. If financially possible, try to stay away from processed foods. All those chemicals are not good for us. A balanced diet is important but what kind of foods and how much I eat (within reason) don't seem to matter so long as its "real". Like eating homemade pizza versus the frozen kind. People are out to make a profit and often substitue "real" ingredients for synthetic kinds that are cheaper or last longer. I don't have much money so I do the best I can, but I'm convinced EVERY little bit helps. If I where to put fuel mixed with any chemical or foreign substance into my car, it would not run very well or for long. And the human body is much more complex than a car; there's a reason why doctors "practice" medicine! Who can say what effect even a small thing can have over the years?
Don't get me wrong, doctors are very VALUABLE and necessary, but all the specialists I've seen, seem to be so consumed by the power of their own intellect that they failed to see the obvious. They missed the forest for the trees! The guidance and care of a physicion is crucial, however, as they do know and have a lot to offer as long as they don't see dollar signs in their eyes, and if they treat the CAUSE and NOT the symptoms. Without my family doctor I would not have made it this far and do not mean to advise people to stop seeing them altogether. Just to try and provide hope and a new way of thinking in which you look to correct the cause of a problem instead of having surgery or popping a pill or just "living with it".
I still do and will have difficulties, and being 25 years old is definetly to my advantage as over time our bodies do decay and fall apart. But being in the kind of pain I was and others like you are in, and having other ailments, should hopefully but just a step along the way, and not simply the "way it is". If your problems have been going on for awhile they may never go away completely but won't any improvement be worth it? I will pray for you ma'am. Don't give up and be patient. Try these things and see if over time they help. AS I said, even if they don't "cure" you of everything, they will still improve the quality of your life in any case. If you or anyone would like to talk more, feel free to keep posting messages I may not always be able to reply as quickly as today, but the Lord willing, I will write back when I can.
I give praises for your better health and no this forum is not set up to be a religious forum but for christians all of life is about God. I commend you for being true to Him and you know what He says........ About all who are ashamed of Him. All good things come from heaven above. That is a fact and yes, even illness can work out for the good. God has used mine to open my blind eyes and I know there is much more to see. I, like you, pray for others because unless God allows, it doesn't happen. I believe that God still heals today as He did before and I have to share that. What good am I if God makes me better and teaches me a better way to live if I don't share it? It's like I buried that treasure. God bless.
I am not a religious person, and this is NOT a religious forum.( I am very spiritual, however.) Christianity is only one interpretation of what is going on here on Earth. The wonderful medical advances here in the U.S. have resulted from understanding and applying scientific principles and the scientific method, not by faith and "belief systems."
I am interested in understanding and solving these complex neurological issues by using current technology, and with the help of the best medical minds - including the 'alternative' medical approaches. I have had interesting results with many alternative treatments, and have had an interesting experience with QiGong. But the fact remains that I was born with a tethered spinal cord, I had an injury, and my nervous system is not working correctly. I am ready to try anything that makes "sense,' and I appreciate what you told me about the movement therapies.
How do you cope with your nerve pain? Are you on any medications? What about exercise? The only medication I'm taking is altace for high blood pressure; I'm taking nothing to cope with parathesia.
I had blood tests for electolyte imbalance and diabetes and also a nerve biopsy for amyloid protein. All these tests were negative.
I am in my mid 50's, menopausal, have had my thyroid removed, it contained malignant tissue, am taking .125 mmg levoxol, am tired a lot and my upper lip is numb. No dental work in recent past, do have some allergies, and have good mental and physical health.
Would a sinus problem cause my upper lip to be numb? (Teeth are all mine and attended to regularly)