[njm6654]

I have been diagnosed with BMS ( Burning Mouth Syndrome) . But it also affects my nose, ears, eyes, tips of toes, tips of fingers, and sometimes soles of feet and random spots on my back. It burns like hot, hot wings and sometimes hurts like actual sores but there are none. I also get a taste like burning metal or cigar smoke in my mouth or the smell in my nose.
I have been tested : brain MRI, EMG and many blood tests, 24 hour urine test and even a chest xray and tested for TB. I am presently on 800 mg of gabapentin a day but it does not last the day, I am bothered by 1 pm and really uncomfortable by 4 pm. Could this be the beginning of MS?

[Erika]

Hello njm,

Welcome to our community.
I'm sorry but I don't have any experience with burning mouth syndrome, but I don't think that is a common first symptom of MS. Maybe someone else on the forum has some information/experience with this and can help you.

Hope that you find a medication that helps...sounds nasty.

With love, Erika

[NurseNancy]

welcome to NT,
i've never heard of this but i hope someone can help with your Q.
do you split your med dose?

it often helps to take a med every 12 hrs rather than once a day.
but always ask your dr first.

[NurseNancy]

hello mcsisters,
one of the hardest things i had to learn in the months when i was 1st dx'd was to listen to my body.

if it said stop, no more errands, go home i started to listen. if not i paid the price. weak, tired, no reserves etc.

i also had to learn to be patient with myself. i was a bit type A also. wanted things to be just right. be kind and gentle with yourself.

[Tmparker04]

I'm new to the site but I've had MS since 2009.

[Erika]

Hello Tmparker and welcome to our community.
There are many threads that cover a lot of different topics here, so we always hope that the information is helpful to those who come. If there is something that you'd like to discuss or share, please feel comfortable about doing so.

With love, Erika

[bknejones]

Hi all! Name is Kelly, I'm a 26 year old mother of two, after having my second son I went blind in both of my eyes in a matter of 3 days and was diagnosed with bilateral optic neuritis, which has since been resolved. After my second spinal tap they found the hhv-6 virus in my spinal fluid and am currently being treated for that, but since the optic neuritis there has been a question of MS, and a little over a month ago started my first confirmed flare up. Extreme fatigue, short term memory loss (very bad), bowel incontinence, severe pain in my lower back and right hip, weakness in my right leg, and very bad instability.. I know there is another word they use for it in the neurology world, but for the life of me I can't think of it. Kind of like a "drunk" stumbling. Anyhow, just 3 days ago I got the confirmed diagnosis and I've been an emotional wreck. I'll be starting a week of IV solu-medrol for this flare up, I've gotten it before (3 weeks worth) for the optic neuritis and it worked very well for that, then they want to start me on copaxone. So, anyhow, that's where I stand now. I guess this was kind of a long introduction, sorry for rambling on.

[Kitty]

Hi Kelly and welcome to NT. It's alot to digest when you're first diagnosed. With the responsibilities of motherhood and everything that goes with that it's easy to become overwhelmed. There's a whole group of wonderful folks here that know exactly what you're going through. So sorry you got the MS diagnosis but at least you know what you're fighting.

[SallyC]

Hi Kelly, Nice to meet you. I hope you like it here and pull up a chair.

Copaxone is a good choice for some MSers. I hope it works to slow your progression and limit your attacks.

Soooooo young. Congrats on becoming a Mother. Thats the best thing of all.

[NurseNancy]

hi tm and welcome to NT,

i've had MS since '03, dx'd anyway. probably had it for much longer.
i hope to hear more about you. how are you doing?