Forum

Neuralgia and MS

I have a new sympton and think it could well be MS related.

Since the onset of MS I have been grinding my teeth whilst sleeping, probably caused by the stress related to MS and my difficult lifestyle now.

Have worn a soft gum shield, made by the dentist, but recently got so bad, I chewed a new one in two in a matter of a couple of weeks. My mouth and tongue are covered in gumboils and ulcers. My dentist sent me to Maxifillio at Worthing hospital who confirmed that none of the areas were malignent and made me another gum shield.

Chewed through it again, so off to dentist. Now he has filed all of my teeth so there are no sharp edges, also made me a hard gum shield. Wonderful, as within days the jaw ache and headaches I’ve suffered for years have gone.

The sores and ulcers though have got worse. A week before Easter I had an awful burning, tingling pain over my whole scalp, excruciating for a few minutes then about 24 hours pain less intense afterwards. The following weekend, I had the same pain in my mouth, roof of mouth, tongue, inside of cheeks and lips. This pain felt as like my skin had been removed and the bare flesh exposed and subjected to a hot poker. I went to the dentist who checked and has once again referred me to the hospital for an urgent appointment as he thinks I may have some form of Neuralgia. Still waiting for a date. I have my annual Neuro appointment on 19th June, have tried to bring it forward but nothing available.

On Sunday, had the same again in my mouth, it is so painful, I felt like taking a month’s supply of Tramadol and Amitriptyline. Called for an emergency appointment at Doc’s and was given a 10.30 yesterday with a nurse practitioner, who suggested amtripyline - which I already take. She told me to wait for the Maxifillo and Neuro appointments to get a diagnosis and the correct treatment. For 24 - 48 hours after each attack I can only drink tepid drinks of thin soup through a straw, During the attacks have increased my tramadol to 2 every 4 hours, ( usually 3-4 daily) but they have no effect on this level of pain.

Have any of you fellow M.S. guys and girls experienced anything like this?

Maryrie,

Hi there, I’m sorry to read you’re in so much pain, it sounds unbearable. I think what the dentist might suspect you have is Trigeminal Neuralgia. I have had this and it was excruciatingly painful; however, my most severe pain was on one side of my face, rather then inside my mouth. Of course, I’m not a doctor or dentist so could very easily be wrong. But here is a link to the MS Trust page on the condition.

I hope you get some relief soon, whatever it turns out to be.

Ben

1 Like

Hi Maryrie

Many thanks for your excellent description of neuralgia, which is sometimes hard to put into words. I thought that having similar in the legs and feet was bad enough, but to have all that happening in your mouth, scalp and face in general, is frightening to think of.

I think Ben is right saying possible Trigeminal Neuralgia, and does speak from experience

Hoping you get some answers and relief soon

chris

It definitely sounds like nerve pain - it doesn’t matter whether it is the trigeminal nerve that has been affected or another facial nerve. The treatment is the same - drugs like Amitriptyline or Gabapentin.

Other people on here have suggested cannabis for nerve pain, or CBD. This last is a legal cannabis product, which has some cannabinoids but no THC (the chemical that makes you high). Other people have found that mindfullness meditation helps during the episodes of pain.

Hope some of this may be of help to you. I have had facial nerve pain, but only short spasms of it, not continuous. It was still absolutely horrible and I really feel for you.