Has any one been diagnosed with Muscular sclerosis along with their trigeminal neuralgia? After 10 years this might be added to my diagnosis. i am not sure how I feel about this. But many of the symptoms have been there for years and I have chosen to ignore them. Kim
This is something that I’m worried about. From what I’ve read if you are diagnosed with TN and you are under 40 years of age MS is one of the first things they check you out for. I’m 36. For the past year or so my arms sometimes feel really heavy and tired. Just recently one of my legs has started going really shaky for no particular reason. I don’t know if these are symptoms of MS and would rather not know.
Hopefully my neuro appointment will come through soon. I’ve only been waiting since October. Word has it I could wait up to 5 months. Jo X x
Yes I was diagnosed with Multiple Sclerosis (not muscular) in 1999 and TN in 2002. I have had 7 gylcerol injections, 1 gamma knife and many many different Meds I didn’t tolerate. my surgeon is going to try MVD and if that fails, he will go back in and actually severe the nerve.
Having TN is not something like the rest of MS symptoms. and it’s not easy to ignore… if you have TN you know it and so should your neuro or even family doc just by the way you describe it.
good luck
Hi–I was diagnosed with multiple sclerosis back in 1973. I’ve had a pretty easy go of it over the years–had three kids and a loving husband–and mostly sensory symptoms. My neuro has always been aware I had some TN touches at times. I’ve never known how much sinus or the weather have been involved. I recently realized the ethmoid nerve in my nose is part of the chain of pain too, as are more typical TN places like my ear, over eyebrows and near tonsils. The pain can involve the entire left side of my body and be tied in with ultra sensitive skin. I posted a fairly long account of my current woes tonight, but even though I saved it, it is gone now. Oh, well. My best to all and a Happy New Year! Jane
Well, that answered my question. I wanted to know how many people with TN also had MS. Now I know! Thanks for listening. LOL I’m still on the track. I go to the doc/neurologist on the 8th and will learn what the MRI said! I"ll let you know. Danni
Hello Kim, I am glad you asked that question. I would have never given it any thought. But I was tested by my Neuro back in November. Not a thorough test, but an evaluation. She said that MS (multiple) might be something else to look at. I too have alot of numbness and tingling in extremities. Mostly at night. I thought it might just my meds, but then again, I have had this on and off for most of my life. I too have chosen to ignore them also. Shellie
Hello Kim,
I did have nearly cripling muscular pain and chronic fatigue all over my body for about 10 years. My doctor did not call it Muscular Sclerosis. From the day I started doing Yoga my muscular pain has almost vanished. I suggest that you may practice Yoga after consulting your doctor. Along with Yoga I do meditation and breathing exercises. There is indeed relief from muscular pain. Yoga and breathing practices seem to have worked to reduce TN pain also. However, when there is episode of TN pain nothing really works. Eat more of Tegrital and Gabapentin, that is all I do.
Best of luck to you and praying for all of us that none of us gets a TN attack.
Harendra.
Thank you all so much for being there. And thank you so much for your responses and encouragement. with all of the pain I am experiencing from TN the last thing I wanted to entertain was another chronic pain disorder. and definitely not MS. So as a defense mechanism I think did not want to focus on one more area of pain. So I stayed as busy as I physically could until I fall on my face ( almost dead) for days, not wanting to talk to anyone unless necessary. I find myself hiding from most people to maintain the illusion that I don’t have pain.
I don’t want people to see that my face and my mouth are not llike the used to be. I can not control my food and drink when I am out in public. It is a little embarrassing. People that I do have meals with out, i alleviate their embarrassment by asking them to warn me or I constantly wipe my mouth after each bite of food.
I have gotten so tired at different times during the last several years that I thought about not being HERE. but as one of you mentioned in your reply; I should continue to pray for strength. i am blessed to have a supportive family, but i get tired for them.
I am in Mississippi. I am not happy at all about the care i received the 3rd thru the 10 year. Now my body is hurting nearly everywhere and I feel like I am walking like I am 87 instead of 47.
I do finally have a pain Dr.Greg Auzenne who practice anesthesiology. He moved here from Houston, TX. but Mississippi is very poor in Neurologist. It sounds like my best form of treatment may be to continue to walk, exercise aand eat good foods, and live a well balanced life.
Again I am thankful to you all.
stay strong, Kim
Kim said:
Thank you all so much for being there. And thank you so much for your responses and encouragement. with all of the pain I am experiencing from TN the last thing I wanted to entertain was another chronic pain disorder. and definitely not MS. So as a defense mechanism I think did not want to focus on one more area of pain. So I stayed as busy as I physically could until I fall on my face ( almost dead) for days, not wanting to talk to anyone unless necessary. I find myself hiding from most people to maintain the illusion that I don’t have pain.
I don’t want people to see that my face and my mouth are not llike the used to be. I can not control my food and drink when I am out in public. It is a little embarrassing. People that I do have meals with out, i alleviate their embarrassment by asking them to warn me or I constantly wipe my mouth after each bite of food.
I have gotten so tired at different times during the last several years that I thought about not being HERE. but as one of you mentioned in your reply; I should continue to pray for strength. i am blessed to have a supportive family, but i get tired for them.
Again I am thankful to you all.
stay strong, Kim
My neurologist told me that TN is in the same family of MS and many people who have MS have TN also.
I was diagnosed with Multiple Sclerosis early in 2001, TN was diagnosed about 2004. However in retrospect I can say symptoms of MS and TN actually occurred simultaneously as early as 1997. I spent so long struggling with TN pain, it was a relief to finally get a diagnosis.
Even though the MS is a huge obstacle, I make TN a first priority (which makes communication with my neurologists a bit of a problem).
I hope you are doing ok,
John
I can see why you put priority on TN as I have spent over 30 years nurturing this horrible thing. The money I have spent on it is unbelievable and my neurologist makes a joke of all the different ways I try to fix it instead of taking meds the rest of my life. I just had my blood work done and it was high. A real concern for my liver now. I am determined to get off the meds.
John Boettner said:
I was diagnosed with Multiple Sclerosis early in 2001, TN was diagnosed about 2004. However in retrospect I can say symptoms of MS and TN actually occurred simultaneously as early as 1997. I spent so long struggling with TN pain, it was a relief to finally get a diagnosis.
Even though the MS is a huge obstacle, I make TN a first priority (which makes communication with my neurologists a bit of a problem).
I hope you are doing ok,
John