trigeminal neuralgia/MS?

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Laura 8888
New Member

Date Joined Sep 2013
Total Posts : 1
   Posted 9/7/2013 9:26 PM (GMT -6)   
I am a 25 year old female. My only current medical history is  well controlled asthma and very occasional migraines (couple per year.) 9 years ago I had several months in which I felt electric like sensations down my neck/back shooting into hands and feet. I saw a neurologist then who did an MRI, which was normal and he said it must be a vitamin  B deficiency and prescribed vitamin B. He determined this without blood work, so I do question this conclusion, but eventually this symptom resolved on it's own. Then I went 9 years without anything else. Then this past winter, I noticed a burning/pins and needles/numbness in my feet. It would come and go. I figured I must have done something to my back or maybe it was due to the fact that I drive a lot for work. Strange, but not concerning at that point. Then, about 4 months later, I was watching TV and all of a sudden both of my hands began to tingle and go numb. This was a Thursday evening. On Monday, when it had not yet stopped I contacted my doctor. She initially suspected a pituitary tumor, but that was ruled out. Blood work included lymes, Comprehensive metabolic profile, thyroid tests, prolactin level, vitamin B12. All results were normal. An MRI was done of the pituitary gland and it was normal.  The tingling/numbness in my hands was constant for about two weeks and now it comes and goes. Then my face symptoms started. The right side of my face constantly feels like pins and needles/burning/tingling. Sometimes it would be only parts of the right side of my face. Other times it presents as if there is a line is straight down the center of my face and included all areas on the right side. Areas include cheek/jaw/lips/edges of ear/nose. Sometimes the pain will be localized very heavy in an area on my cheek or near my eye. Now it is on both sides of my face, but more so on my right side. It seems to be triggered by heat, smiling, and touch especially when my husbands facial hair touches near my mouth. The only times I get relief is when I sleep and an hour or two after I wake up. I followed up with my PCP she suggested seeing a neurologist and said I may need a spinal tap. She also mentioned that early ms may not show in an MRI, but would likely show changes in spinal fluid. I have an appointment with a neurologist and am waiting for the appointment date to approach. I have noticed some similarities with my facial symptoms and atypical trigeminal neuralgia. The biggest similarity is the distribution of the nerves is exactly the same as the location of the pain I am experiencing.  The most common cause of TM in those under 4o is MS. However, this disorder is very rare and only about 3-5% of people with MS have it. Furthermore bilateral (occurring on both sides) is very rare (only 1-5% of TM cases are bilateral.) Has anyone here presented with atypical bilateral trigeminal neuralgia caused by there MS? If so what gave you relief? This has been constant burning/prickling sensations for about 1 month now and it is miserable!  This is by far my worse symptom. One other problem I have been having is that every time I go swimming I suffer urinary incontinence. I don't know if its the water, the exercise, or some other factor. I have NO control. I just feel it going down my leg and cannot stop it. I have had urinary frequency ever since I had my first child, but never incontinence.  Would MS cause incontinence due to exercise? I usually swim 20-30 laps. Does anyone have any input or suggestions? I am just afraid that this will be a repeat of my neurologist visit 9 years ago. I need answers this time. Please help!

Forum Moderator

Date Joined Jan 2007
Total Posts : 3571
   Posted 9/7/2013 11:43 PM (GMT -6)   
I suggest you see an MS specialist. Bring your symptom history. You have a disturbing list of issues here. I wish you the best of luck.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Bad Mojo
Regular Member

Date Joined Aug 2010
Total Posts : 70
   Posted 9/8/2013 11:17 AM (GMT -6)   
I had an MS attack in Mar 2011 and I've had a burning sensation all along the right side of my face and right arm ever since.  My neurologist prescribed Gabapentin (aka Neurontin) but I quit taking it because it didn't seem to help.  I then tried Lyrica but quit that too for the same reason.  I still have the neuralgia, but after 2+ years I've learned to ignore it for the most part.  Like you, I have triggers that make it worse.  I haven't found anything to treat it but some people get relief from the drugs I mentioned above.  I am trying the Paleo diet now (started 10 days ago).  some say it can help with autoimmune disorders.  No noticeable changes yet (other than weight loss) but I'll post if I notice anything.  Go to an MS Specialist like Gretchen suggested.  Good luck. 
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