Right at this moment, both ears are tingling and near numb as are my temples. These sensations are on the way to getting stronger. My lower jaws feel like the dentist has given me injections in both jaws. Now for what I think is so wierd - both my forearms into the hands tingle also. Even more unexplainable to me - when the above symptoms get bad, my right foot (left somewhat) begins to tingle in a firey sort of way. (one year ago this month I had bunion surgery on this foot.) All if this started about 8 months ago after and appendix surgery. It seemed to start with the forearms crawling with sensations. I thought it was new blood pressure meds. Not so. Next my mouth and nose began to burn. That stopped (thank whoever) but soon my ears began to tingle along with the jaw. Now it has spread to often encompass my forehead and scalp. When bad I ice, but that is all I have found to help the pain.
After many doctors I ended just recently with a face and head pain specialist. Two days ago he injected me at the C4,5, and 6 levels with a steroid. I am to have another shot in two weeks. However, in reading "Striking Back" I see nothing mentioned about spinal injections. But I wonder if I have ATN or something else. Does anyone relate to the symptoms I describe? Feeling weird and an outsider even in the TN areas.
John
Ohjohnny,
There is no question that whatever is going on is nerve related. I have had the same injections but not for TN. I have problems with my neck as well and have Connective Tissue Disease that presents like Lupus. I can't help but wonder if you may be experiencing some sort of auto-immune disorder. You stated that you had a spinal tap that came back normal so that takes out MS but there are so many others. Some of what you describe sounds like fibromyalgia symptoms. Have you considered that? I realize that there are still some doctors that don't recognize the existence of fibromyalgia but most do at this point. Are you taking any medications? If not, perhaps you could try Lyrica or Topamax. They both seem to work well on nerve pain. There is also Cymbalta, which seems to be highly effective for some people.
Good Luck,
Cathy In MD
Have they completely ruled out MS? A spinal tap isn't the only test. Check out the TN and MS group. Your symptoms sound like many there. Also a discussion on MS. I'm not here to diagnose, just offer things to read.
Hi John, yes, I get the tingling/stinging pain in my forearms sometimes as well as similar strange pain in my left foot & ankle, sometimes lower leg. Also, stocking feeling on my lower legs at times, but when my face gets bad I get the pain on my left side all the way down. I have a suspicion of MS as there are other symptoms.
Hi,
If you suspect MS, you should check the information available and discuss your concerns with your doctor. One of my daughter's has it. She had her first attack when she was 15 year old, which affected her vision temporarily and caused her hair to grow out silver in one spot and it still does. At that time she only had one lesion on her brain so they didn't do a spinal tap.
Last year, at the age of 27, with absolutely nothing in between all those years, she had a second attack. The second attack caused numbness and tingling in her face and tongue on the right side only. Her MRI then showed two brain lesions, one of which they could tell was old and the new one. That's when she was given the spinal tap and they found multiple oligoclonal bands that are almost always present in MS. Now, only one year later, she is on disability.
When I was trying to find out what was causing my facial pain, I was checked for MS. My MRI only showed one lesion on my brain and one oligoclonal band. I was told that I did not have MS because I only had one lesion and one band and to be diagnosed with MS you have to have multiple lesions and multiple bands. (I don't know if that is completely accurate, it is just what I was told.)
Have you had an MRI of your brain? Do you know if your lumbar puncture indicated any oligoclonal bands? Even if you don't have brain lesions, if you have multiple oligoclonal bands, they are an indication of something.
I realize this is all so frustrating! I think that "invisible" has offered an excellent idea! I didn't realize that such a group was on this site.
Cathy