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Help! I think I may have this but I can`t seem to get a diagnosis.
I have some periferal neuropathy on my foot and it it very similar except on the face and head it is dibilatating.
The 2 doctors I have seen said its muscle pain because I have arthritis in my neck. I don`t believe it. My neck doesn`t even hurt! I`ve tried acupuncture and physical therapy. The pain is unbearable to live with and no one gets this!
Some of my symptoms are a burning and numbness in the face a tightness and a creepy crawly sensations, my face feels wet...Varies with intensity of pain. Also extreme exhasution..
Can anyone relate to this?
I have some sort of neuropathy - cause not yet defined. It might be viral, like a Guillen-Barre variant) or what I think - a reaction to a statin drug I was taking.

In any event I had numbness on my face and occasional shooting pains in my teeth and gums. My eyelid also twitches. I am on nortriptyline. I dont know if it is helping or the symptoms are subsiding on their own but I feel a bit better lately.

Have you tried any vitamins/supplements?
i am kind of confused as to how in the heck these docs could realistically atribute these types of paresthesias to plain old muscle issues.there appears to most definitely be some level of crainial nerve involvement going on in either the facial area itself,but most likely the c spine area.i too have facial paresthesias(nerve related wierd sensations or perceptions of particular types of sensation)in my mid face area that are most definitely stemming from my c spine damage and deterioration.tho it is possible to actually have muscle inflammation caused by nerve affectaion,something woul have to be triggering any muscle issue and that would most likely be nerve related in som way.

has any doc even bothered to do an MRI,with contrast dye or even a simple c spine series X ray?the x ray would at the very least tell how the disc and vertebrae are aligned within the c spine.pretty basic stuff but can really show alot if there is any actual vertebrae problems or dyhydrated or herniated discs there.unfortunetly it cannot see way into the nerve and spinal levels which is where you could pick up possible nerve root compression or bone spurs that are irritating and inflamming your neck muscles and also causing intermittant MRI with contrast dye really would be your best bet at possibly finding the culprit.doing this on the brain as well as the c spine really would be best since alot of crainials run thru both the face from the brain and some from the head and face actually run down thru the c spine then loop back up into the face again.this is why my facial crap is there,it is not stemming from my brain at all,only my cspine area.

just what are the actual specialties of the 2 docs you have seen already?there is just no way to tell anything for sure as far as actual Dx unless the specific areas have been thoroughly evaluated with the proper testing.i would most definitely sit down with the one doc you feel the best about and discuss the testing i mentioned,there is just really no other way to actually obtain the info you and your doc need to even begin to make an actual Dx without more further in depth evaluation.

remember,any doc you actually see IS working for YOU,not the other way DO have the right to demand the proper testing for dx of any actual condition or given set of symptoms you are suffering with.have they even addressed your actual pain with any type of meds yet?just follow up and keep buggin the living crap outta them til someone actually listens to you.good luck and please let me know how things are going for you,K? marcia
Yes, I have tried many natural supplements and I`am also on a no amylose diet (no sugar or wheats) but it has nothing to help with this.
Well, I have been to neurologists mostly. I have recently had an MRI without contrast (brain) and some other tests and eveything came back fine.
The last neuro doc I saw last week reviewed the previous neuro doc as well as many other past reports. One imparticular showing degenerative disks in my cervical spine, hence the reason he agrees with the other doc. Yes a few years back I did have an MRI of my spine and it could not show if there was compression or not.
Personally I do NOT feel like this has anything to do with this facial and head pain. I have so many neurological symptoms. This last doc even saw calcification on the nerve in my left eye but blew that off .
I have been exposed to toxins and most doctor s dont buy into this belief.That the toxins I have been exposed to can harm someone. (Mold & Silicone)
Many times this can cause nerve damage.
I just need to get someone to validate this and help me.
Franceunderpant and Feelbad,

I`am sorry I forgot when I responded to your relplies to address you by your names. I`am definately a newbie in a lot of pain. Sorry.

believe me, i can totally relate to what you are going thru here.the MRI you had apepars to have been a while ago,on your c spine?it really wouldn't hurt to have a follow up done now to see what degenerative changes have occured since.degeneration is just an ongoing process that will change the way certain structures actually effect the surrounding nerves.the sympathetic ganglion plus the outter chain are also within this spinal area too and believe me,can create a ton of really strange and wierd types of problems alot of neurological appearing ones,when it has been either damaged or somehpw affected by some particular issues that can occuer within the c SNS is also damaged because of surgery and i cannot tell you how freaky some things are now inside my body.the SNS just affects so may system functions.try going down to the spinal cord forum below this one and just read thru some of the threadas there,you may even notice alot of paralells between you and others there.just a suggestion for you.but i really do think,considering you are getting no answers,having that follow up MRI really could reveal something more significant now that soe time has passed.mine is constantly changing in certain areas.i have to have one a year just to check for the possibility of spinal cord level changes and to keep an eye on the continued degeneration within my screwed up c spine.i do wish you luck.please keep me posted.

just an FYI about the possibility of the toxins being the culprit?this could be one possibility but i think if they could actually do some testing on your immune system/bloodwork(since this would most likely be some sort of an autoimmune type of reaction)you would at least possibly see some sort of indicators for this if something was going on there.just a thought.Marcia
Hi there..I know what you mean about the docters and thinking mold and other things can not harm you. Last April I ended up with bells palsy on the right side of my face...It was pretty bad.I looked like I had a stroke,thankfully 5 months later my face went back to normal..well for the most part.The pain in my neck has not gone away.. I have a long list of problams I have been having but a year later my docter is coming around to the idea that the bells palsy and other issues were caused by mold. It is the worst when you go to many docters and they do not listen to you then tell you they do not know what is wrong with you...I hope all works out for you...Best of luck
You are so fortunate to have found a doctor to validate what you. There are not many doctors around who can help folks detox from mold but if you`d like I can give you a name of a doctor and a book that has been very helpful.

Good luck!


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