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Joined: Apr 21, 2008 Posts: 216 Location: New Brunswick, Canada
Posted: Fri May 16, 2008 7:59 pm Post subject: Brain stem lesions
I know very little about these, and of course I didn't think to question and prod the neuro I saw today further. Are these classified as 'classic' MS lesions? I know I've seen enough references to MS and brain stem lesions linked to MS. If in fact I have these (as the neuro I saw today suspects), which would be the cause of headaches/migraines and burning mouth... will copaxone therapy possibly help with these lesions as well as the others located on my MRI? What differentiates brain stem lesions versus those in other locations? My interest is around these lesions specifically now, since they are responsible for my pain. _________________ Dx RRMS March 5, 2008. I achieved my dx in absence of a GP, by being proactive and telling my story. An ENT listened and ordered my MRI, leading to my dx.
Joined: Sep 30, 2007 Posts: 96 Location: Charlotte, North Carolina
Posted: Fri May 16, 2008 8:22 pm Post subject:
Nenu,
My first recognizable attack was caused by a brain stem lesion. I had vertigo, double vision, and vomiting. As far as I understand it, a brain stem lesion is no more odd than a lesion in any other location. I don't really have pain, but I do have residual symptoms such as numbness and stiffness on the left side. Just like any other lesion in the CNS, the CRABS should be able to effect a brainstem lesion just like any other in the CNS.
Speaking as someone that has a brainstem lesion I can say that the interferon therapy has had a positive effect.
Joined: Apr 21, 2008 Posts: 216 Location: New Brunswick, Canada
Posted: Fri May 16, 2008 9:57 pm Post subject:
Definitely Jack! Thank you. If anything, your words are comforting in this pain. I really hope my neuro can give me a pain reliever that helps deal with this, because it's absolutely miserable to live in daily pain. _________________ Dx RRMS March 5, 2008. I achieved my dx in absence of a GP, by being proactive and telling my story. An ENT listened and ordered my MRI, leading to my dx.
I get neuropathic pain (in my rt arm/hand, and my rt leg) - definitley neuropathic in origin, because of the ms lesions in my c-spine.
I used to take neurontin 400mg in the morning and the afternoon, then 800mg at night. You feel a bit groggy for the first couple of weeks - I worked up to that dose, but once you are used to it, it is very effective for the pain.
My neuro recently changed me to Lyrica (it only became available in my country a couple of months ago), and I feel less groggy - the pain releif is maybe not as good, but it takes the agony that makes you crabby away, and on those days that the pain would normally be a nagging irritation, it is virtually gone.
Neurontin is an anti-epileptic drug, and they discovered it's use in neuropathic pain sort of 'by accident', so it is prescribed 'off-label' here in my country for ms.I
t is not dependence preducing like regular pain meds. Lyrica is a derivitive of gabapentin (the active ingredient in Neurontin), and has been developed specifically for diabetic neuropathy, which is generally a peripheral neuropathy (not from the CNS), but it works well for neuropathic pain of CNS origin too.
I also take 25mg of amitriptyline at night (it is actually a tri-cyclic antidepressant, but also helps for neuropathic pain), also for the neuropathic pain - the combination of these two drugs really does help, but again, I built up to them to find the right dose and combination under my neuro's supervision.
So hang in there - you will get help, I am just sorry that this neuro didn't at least start you off on something and has left you to suffer. Pain really brings you down - it is so wearying and draining - get some meds, even if you just need them for a couple of months, though in my experience, you might need them for a while.
The thing with these lesions is that you can't tell what residual symptoms will be permanent and which will be transient - until they go! From what I understand, brain-stem lesions are fairly common. I had a teeny on that was responsible for some bad vertigo and vomiting a few years ago, but it resolved completely - no symptoms after that in that area.
But my c-spine lesions were active for a long time (enhancing), and even though I am on Avonex and have not got worse in this area, I have not got better either - so stability has been gained (great), but I still take meds for my symptoms (pain, numbness, weakness, muscle spasms, fatigue etc).
So the upshot of this long rambling post is that:
1. neuropathic pain can be treated by a variety of meds that you can live with and that improve your quality of life;
2. brain-stem lesions are fairly common, and your symptoms fit with it, do you have vertigo or balance issues too?
3. Copaxone should (?) stop you from getting worse, or at least slow that down, but whether or not your brain-stem lesion re-mylenates and your symptoms disappear all together - time will tell. It might disappear completely, it might get better to the point that you only feel it when you are fatigued or over-heated, or you might just have to take the meds for the pain. Bit of a crap-shoot, I know, but you are doing the best you can with the Copaxone and all the supplements you are taking.
Joined: Apr 21, 2008 Posts: 216 Location: New Brunswick, Canada
Posted: Sat May 17, 2008 8:20 am Post subject:
Thanks Ally It's encouraging to hear that this doesn't mean "I'm SOL". I've read about burning mouth quite a lot, and most things I have read indicate that 6-7 years is the turn around point for people experiencing this. I think what scared me a bit was seeing the statistics of women that are post menopausal are in the biggest % to experience this. I'm not near that age to my knowledge at 31! lol.
As you say, the areas may 'heal' to a degree, but they may not. Hard to tell at this stage. It's been nearly a year with burning mouth for me. I really hope this particular symptom heals. I have faith that it will. What I need right now as you say is relief with the drugs. It's my fault for not mentioning this type of pain straight up with my neurologist during my diagnosis. I think he was mostly concerned with my MS hug/girdle sensations and past bouts of L'Hermittes, and of course watching my walking and movements for signs. He wouldn't have known about the burning mouth and what an impact it has on me. I didn't really highlight it, and now I'm kicking myself for it! I brought it up with my GP and she didn't really seem to understand how terrible the pain from it can be... I've been kept awake at night for hours with this!
I'll get back to you on what is prescribed when it is. _________________ Dx RRMS March 5, 2008. I achieved my dx in absence of a GP, by being proactive and telling my story. An ENT listened and ordered my MRI, leading to my dx.
Joined: Apr 21, 2008 Posts: 216 Location: New Brunswick, Canada
Posted: Tue Jun 10, 2008 9:33 pm Post subject:
Oh, a follow up to this message...
So I did talk to my neuro, who's very familiar with burning mouth syndrome, and said he treats other MS'ers with it.
He put me on Neurontin/Amitriptyline, and I began at 100mg Neurontin, 10mg Amitriptyline.
I am now up to 400mg of Neurontin, still 10 mg of Amitriptyline. I find this combination is working. Occasionally I have 'breakthrough' pain (usually during times of increased anxiety/stress), but it's short lived compared with before.
So this combination of medications is working. I had to build up to this point with them, and they didn't work right away. Next Monday I'll be up to 500mg Neurontin, still 10mg Amitriptyline.
So there is definitely relief out there for this problem, thankfully! _________________ Dx RRMS March 5, 2008. I achieved my dx in absence of a GP, by being proactive and telling my story. An ENT listened and ordered my MRI, leading to my dx.
Joined: Apr 21, 2008 Posts: 216 Location: New Brunswick, Canada
Posted: Wed Jun 11, 2008 1:14 pm Post subject:
Thanks folks! Move's in less than 2 weeks. I'm so excited! _________________ Dx RRMS March 5, 2008. I achieved my dx in absence of a GP, by being proactive and telling my story. An ENT listened and ordered my MRI, leading to my dx.
Joined: Mar 07, 2007 Posts: 82 Location: Toronto, Canada
Posted: Thu Jun 12, 2008 9:06 am Post subject:
I've been following your burning mouth saga and it sounds so terrible Nenu - I hope it gets resolved and stays behind you permanently.
I have three lesions in my brain stem, which have caused vertigo and numbness. I presented with both of these symptoms when I was diagnosed, and since taking Rebif the numbness has disappeared completely with no flare-ups, but the vertigo still haunts me when I am stressed or overheated.
A trick I have learned is to hold an ice bag or cold water bottle against the back of my neck for about half an hour. It seems to calm things down and lessen the flare.
Sorry I can't recall at the moment - have you done steroid treatment? I did a SoluMedrol drip for my vertigo relapse and it was amazing how quickly it worked.
Joined: Apr 21, 2008 Posts: 216 Location: New Brunswick, Canada
Posted: Thu Jun 12, 2008 11:30 am Post subject:
Yes, I've done the IV steroids twice now. It does get better after the steroids (as do other symptoms I have), however it never completely goes away, and when I have stress/anxiety it comes back pretty full force. But the meds seem to be doing the trick _________________ Dx RRMS March 5, 2008. I achieved my dx in absence of a GP, by being proactive and telling my story. An ENT listened and ordered my MRI, leading to my dx.
Joined: Feb 19, 2006 Posts: 340 Location: suburb of Chicago, IL USA
Posted: Thu Jun 12, 2008 7:25 pm Post subject:
Nenu, just wanted to let you know my story. I presented with a rather large brain stem lesion 4 years ago that got worse before it got better. As of my last MRI in February it is virtually indetectable (neuro's words). I was very pleased to hear that because I thought for sure that I would get a black hole. I don't know if it has any connection but I have been on Rebif for 2 years. I hope that you can permanently overcome your symptoms.
Joined: Jun 02, 2008 Posts: 12 Location: Mississippi
Posted: Thu Jun 12, 2008 7:43 pm Post subject:
Nenu,
I am fascinated to read about your burning mouth. Mine too burns so bad and i feel like an idiot trying to explain this to other people. I have experienced the inside of my mouth peeling also. I told my Neuro that the inside of my mouth was often numb but I did not mention the burning because I feel crazy enough as it is. I will tell my Dr when I go back. Thanks for sharing!
My story is your story Jack. I am finding im not alone with my case. For the first year, i had a bad vertigo attack maybe twice. then last year they built up to 3 or 4 times a week! My General Dr. brought up MS and I thought he was high!
Brain stem lessions and MS was the result. I go in on Wed. to get my dx and meds rx.
David _________________ Life is hard, buy a helmet.....
Joined: Apr 21, 2008 Posts: 216 Location: New Brunswick, Canada
Posted: Fri Jun 13, 2008 12:06 pm Post subject:
catfreak wrote:
Nenu,
I am fascinated to read about your burning mouth. Mine too burns so bad and i feel like an idiot trying to explain this to other people. I have experienced the inside of my mouth peeling also. I told my Neuro that the inside of my mouth was often numb but I did not mention the burning because I feel crazy enough as it is. I will tell my Dr when I go back. Thanks for sharing!
CF
Cat, please please PLEASE tell your neuro about the BMS. If you have ruled out deficiencies, yeast, yadda yadda, and you know it's neurological, get yourself on something to help this pain. It's HORRENDOUS, but Neurontin/Amitriptyline have helped me greatly. I still have burning, but it's tolerable, compared with before when I couldn't sleep often due to it, and it sent me into anxiety/panic state, which of course flared other symptoms.
If Neurontin/Amitriptyline do not help, there are many options out there (Klonopin is a frequently used medication for this).
I found this link, and while the information is older, I think it still applies to identifying the pattern you experience with burning mouth, and what course of treatment to seek:
http://www.aafp.org/afp/20020215/615.html _________________ Dx RRMS March 5, 2008. I achieved my dx in absence of a GP, by being proactive and telling my story. An ENT listened and ordered my MRI, leading to my dx.
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It's encouraging to hear that this doesn't mean "I'm SOL". I've read about burning mouth quite a lot, and most things I have read indicate that 6-7 years is the turn around point for people experiencing this. I think what scared me a bit was seeing the statistics of women that are post menopausal are in the biggest % to experience this. I'm not near that age to my knowledge at 31! lol.
