can anyone tell me if this ever happened to them. I awoke in the middle of the night and it felt as though the left side of my face had been lit on fire. I mean the burning was so intense I did not know what to do other than put a cold rag on my face. This went on for 18 hours and then disappeared. about 10 days later the same thing happened but this time it was on the left side of my back and it only lasted 1 hour. I have been told by 2 doctors that they believe that I have ms but I am still going thru tests. the brain mri has been descibed to me as a classsic ms brain. I was told to have a new mri of the neck, brain and thorasic spine. I had a lp 2 weeks ago but do not have an appointment again with the neurologist until Aug. I am already taking most of the drugs that treat ms symptoms. Was that burning a symptom of ms? It was the first time I had ever experienced anything like that in my life. I do have constant burning,pins and needles, fassculations and muscle spasms in my legs but this was something new to me. Thanks for your help, roncart
I have that happen to me also. As a matter of fact, it was one of the most prominent symptoms I had at the time of my dx. The left side of my face got really hot, red, and burned terribly. It lasted for hours, and I did the same thing - put a cold rag on it. It came and went for about 2 weeks, sometimes going down my neck on that side and onto my chest and left shoulder. Mostly it was the face though. It went away and then came back about a month later. It is a very strange feeling, but I'm used to strange feelings! It turned out that I had a lot of other symptoms that had been blamed on the wrong things that were actually ms. I was dx in 08, but my MRIs showed lesions as early as 04. I didn't even know until a year or two later that I even had them. Looking at symptoms, I've no doubt had MS for 10 years. Good luck with your journey. I wish you well.
Just wanted to welcome you here, and let you know I have been dealing with the same face pain intermittently for quite awhile. It has gotten so bad, even the air hurts my face, Feels like it is on fire.
I was put on Trileptal for this, and did have some relief. I cant have anything touch my face when it is so bad. For me, it is called Trigemial Neuralgia. It has lasted a few weeks at times...I know how awful that pain is, and I am sorry you are dealing with it.
Can you move up your neuro appt any sooner than August?
Hi thanks for your response and the welcome. If it happens to me again I am definitely going to call and try to get a sooner app. I think it was so long between apps. because I was on alot of the meds. for the symptoms that I was having anyway. He also wanted me to get updated mris of the brain,neck and thorasic spine. I have had what has been described to me as brain lesions in the classic ms pattern along with alot of varying symptoms in the past 2 years. I have been put on many different meds. from many different doctors. The rheumotologist gave me the pain meds(Bless his soul) the family doctor gave me the detrol for the urinary problems, the stomach specialist put me on the protonix (for gerd) The er doctor gave me valium to combat the vertigo,the old neurologist gave me neurontin for the nerve pain in my legs and now the new neuro put me on the zanaflex for the muscle spasms. I have been doctoring for a long time with different problems. I no longer feel alone now because reading all the stories on this site made me see that there are alot of people out there with the same struggles. Looking for the answers and the relief of their symptoms. The burning was new to me (except in my legs) but from reading everyones post that responded to me it seems as though it is just another symptom of ms. I feel bad for you that you had to suffer with that for weeks. Just the 18hrs was enough to drive me crazy. I wanted to ask you if you don't mind answering, do you have ms?.........roncart
thank you for sharing your experiences with me. Now I know that I am not crazy, or alone. Thank God!!!!! I guess it is just yet another symtom of ms. Like you I have been doctoring for years with all these crazy things that kept happening to me. At times I thought that I was crazy but I knew these things were happening to me and I did not know why. Now that I've had 2 radiologists, a neurosurgeon,and a new neurologist telling me they believe I have ms everything is making sense. I thank God that I found this site because it has helped me immensely! I hope that this day finds you feeling well. Again thanks for the response. Take Care,...roncart
you have described it to a t!! That is what it feels like. As though someone put acid on half your face. (or whatever part of your body is on fire) people thought that I was crazy when I told them that half my face was on fire. All I heard was well it looks ok. I guess it is another symptom that we have to deal with. Thank you for your response. I hope you are doing well today. take care.......roncart
Yes, I am diagnosed with MS. Just recently, since April. I am seeing neuro this Monday to discuss options. I "assume" it will be injectable meds for the MS. I have had symptoms for about a year, maybe longer, hard to tell though.
I hope that you find the right meds. that help you with your problems. I am still looking for answers. I have 2 radiologists and a neurosurgeon say that I have ms. I am waiting for the new neuro to make a decision. He was very surprised at my first visit when I told him that 2 years ago the doctors in Phila. said they did not think it was ms, he asked me what they based that on and I told them they thought that because I did not have constant balance problems they were not convinced. Now I must admit since then I have had a great increase in symptoms. so anyway he wanted me to get updated mris and see him with those films in 3 months. they did suggest at that time that I get a lp done which I refused because I know that is not a real definative test. If they said it would clear up any doubt I would have done it . I am glad you know what you have and now you can concentrate on getting better. Please let me know how you make out at the doctors on Mon. Good luck..... Carol (roncart)
Thank you for your well wishes. Monday cant seem to come fast enough, I am pretty sure I am in yet another relapse. My face pain came back yesterday, as well as tongue numbness, and now "shaky" vision, which I think is Nystagmus.
Hopefully the doc will start something that will help me out.
I hope August gets here fast for you, it is a shame you have to wait that long. Think they can put you on a cancellation list?
Isn't it funny how you said you have the face pain again and the same thing happened to me on Fri. evening. I went to get in the car and all of a sudden the left side of my face again felt as though someone set it on fire. It is a burning pain. I took my zanaflex when I got home hoping that it would knock me out so I wouldn't feel anything. (it worked) but when I did wake up it was still burning, not as severe. it lasted a total of about 14 hrs. and my husband noticed that the left side of my face looks slightly red. I took a closer look and it looks as though the tiny blood vessels under the skin broke. I told him maybe that happened because of the burning. That is the 2nd. time that has happened to me. the first time it happened was April 25th. and the only reason I know that is because it was my nephews birthday. As far as going to the doctor sooner goes I personally think he was in no big hurry to see me again because my list of meds(other that the ms drugs themselves) are the same drugs he would put me on for the symptoms anyway. So there really isn't much he is going to do anyway. I hope all goes well for you tomorrow. Let me know how you make out. Good Luck... Carol (roncart)
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