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Avatar universal


Hello. I am a 24-year-old female. I have had mystery symptoms for 4 months now. It has completely taken over my life. I can't even count the number of doctors, therapists, acupuncturists, dentists, etc. I have been to. I have had all the standard blood tests, MRIs, X-rays, and CT scans. All negative. So far I have been diagnosed with occipital neuralgia (pinched nerve at base of neck), TMJ, and 'mechanical' meaning misaligned spine, oh and almost-there-fibromyalgia. It just doesn't seem correct. I'm so beside myself on this. I feel that there is one thing causing all these symptoms. My symptoms include, chronic tension headaches 24/7, burning sensations at the back of my head, severe neck pain 24/7 (always warm), back pain, severe jaw pain (no clicking, popping or locking though), vertigo/ dizziness, disorientation, staring off into space, fatigue, panic attacks, swollen lymph nodes in back of neck, lightheadedness, light sensitivity, tender scalp all over, ear pain and popping. The symptoms are extremely severe in the morning but they only slightly lessen throughout the day.

Nothing relieves the pain or dizziness. Not meds, not physical therapy, not acupuncture, not massage, not even exercise. In fact, sometimes it makes the pain worse. Nothing triggers the burning sensations in my head. They just happen randomly throughout the day. I guess my question is, could this be MS even though my MRI came back normal? Anything else I ahould check for?

So far we have eliminated:

b-12 deficiency
magnesium deficiency

I have had:
brain MRI  (w and w/o contrast) - normal
cervical spine (w/o contrast) - normal
CT scan - normal

I would appreciate any advice. Thanks!
6 Responses
Avatar universal
I have been having similar symptoms, headaches, pain in jaw, facial burning and numbness, and have also had most of the test you have had done.  All of my tests are normal.  I was diagnosed with TMJ, and I am wearing a bite splint, which has helped the jaw pain.  I started waking up to muscle twitching, usually in my legs, shoulders and hands, which was sending me into a panic attack.  I have never had any of these things until the last 2-3 months.  I have been able to recognize that my anxiety level is over the top with worrying about these symptoms, and I started taking Affexor.  It has actually helped me with my anxiety, and some of the pain I was having.  My doctors keep telling me that anxiety can play terrible tricks on your mind, and I am slowly starting to believe them.  I don't know if it helps you, but try telling yourself you have had a lot of major tests, and they are all OK, and maybe if you can relax a little, your symptoms will lessen or go away.  Good luck, I know what you are going through.
Avatar universal
thanks for the response. i too got on effexor and benzos to try to relax but it just made the dizziness and brain fog so much worse that i got off all meds after 7 weeks. i was also getting side effects like high blood pressure and restless legs. i really couldn't tell if my condition was worsening or if it was jut the meds. it just made it so much more confusing. i needed to know how my condition was w/o the meds. i now know that my own stress and anxiety is not causing the symptoms. i do know it is definately magnifying them but there is something going on here. my entire neck feels infected like there is fluid building up or something. my head and ears hurt so bad everyday it feels like they might explode. i have experienced so many foreign symptoms that i can not even bein to describe them. there is no relief from this. i'm in so much pain. could this be mono or allergic reaction to a chemical or food? hmmm...if only I could figure this out. If only, if only. why is this a mystery?
Avatar universal
I had terrible ear ache, that is what started my whole episode.  I went to the doctor, who said it wasn't my ear, it was Trigeminal Neuralgia, from a nerve by by ear. I looked up information on that and it was often related to MS.  I was on tegrotal for the pain, and I had a series of side effects from it, facial numbness, tingling, muscle twitches, and so on.  I stopped the medicine, and thought I would be fine, but the symptoms are all still here, so I don't believe it was a drug reaction anymore.  I was diagnosed with TMJ, no trigeminal neuralgia like my primary doctor thought.  I have new things daily, but so many of the test I had were normal, that I have to tell myself that I am OK.  I have only been taking Effexor a few weeks, but I have had some improvement.  The worse part of this for me is the facial numbness/tingling, because I have a strong fear it is someting terrible that they just haven't found yet.  Be strong, and I hope you get better soon.
Avatar universal
Does not sound like MS.  Definitely more like TMJ and your anxiety  level will play off it.  Since you have TMJ, have you considered asking your dentist to make you a bite plate.  They are usually worn at night for people who grind their teeth at night.  But you can also wear in daytime b/c you are probably unwittingly clenching your jaw which will tense the neck muscles, back etc.  

If you have trigeminal neuralgia, I would think your doctor would start you on cymbalta rather than effexor.  cymbalta is in the effexor family but cymbalta is typically prescribed for neuralgia pain or diabetic pain as well as depression.  It works faster than effexor, like 3 days as opposed to 3 weeks.  You might want to ask about that.
Avatar universal
i was also put on tegretol and it was causing all the same side effects (muscle twitching, tingling, etc.) and it didn't help at all so i got off of that med too. i worry about the same thing- i keep thinking that maybe its something they haven't found yet b/c i have never felt this horrible before. its hard to get my mind off of it when the physical pain is always there. do you think TMJ can cause a pinched nerve in the occipital region? how is that related? the vertigo is the worse symptom which is causing the most anxiety. i just can't imagine living the rest of my life this way. i'm not giving up hope though. good to know others are out there that can relate. i went to a tmj and myofascial pain specialist and they told me it would be $3000 for the treatment which i can't afford b/c i quit my job and have already spent thousands of dollars in medical expenses and i have insurance. i may just get a standard bit plate but i heard it can make it worse if your jaw is already misaligned. who knows...

thanks for your comments. good luck and good health to you.
Avatar universal
thanks for the cymbalta suggestion. i am going to look into that as well as a bite plate.
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