Looks rather dead here, so wondering if anyone still checks this board?
I too am dealing with BMS…
Missy
I guess they have moved it to careplace.com?, however, I have not had any
good information regarding bms from any site???
Candy M
----- Original Message -----
From: “MCKMNL” bms-cpt4833@lists.careplace.com
To: candy@alderart.com
Sent: Thursday, June 28, 2007 8:50 AM
Subject: [bms] Does anyone still post or check in here
Hi Missy,
I want to make sure you get this email before I send you my life with
BMS. Please confirm. thanks, lw
limpoic acid did not help me and have not found anything that will. it is a curse that has no answer. all the best Aileen
smpx2a bms-cpt4833@lists.careplace.com wrote:
This is why I did not type my life story, it looked so dead in here lol… Please do share your story with me! I will look forward too reading it, and sharing mine as well 
Missy
Thanks for your email. My story is sad and true. Have BMS for 3 yrs
as a result of tooth extraction of a perfectly fine tooth. Probably
first started with a crown (that I did not need, but trusted my
dentist) Everything went down hill from there. Had this "sticky more
aggravating feeling where crown was done. Went back to dentist
dozens of times for polishing, etc. Finally replaced the crown but
still had the same “feeling”. Then it blew wide open and had so much
burning pain went to 3 other dentists and 4 doctors for help. Found
June’s website on BMS and knew that was it. Of course nobody here
has ever heard of it except my neurologist and I am his 2nd patient.
Spent $5000 going to Washington, DC to Dr. Henkin (big fat con) and
tried to believe he could help with his transcranial stimulation
treatment at George Washington University. Total failure and here I
sit with no improvement, poorer and no hope in sight. June had the
best website I had seen with the best info and there are about 6 of
us that still stay in touch vis emails. My BMS effects everything,
my mood, health, appetitite and some foods make it worse than ever.
Wish I had never listened to my dentist in the first place! lw
Hi,
I also have BMS from a dental procedure. It has gotten somewhat better in the past year. I get the best relief by putting 1/2 teaspoon of red hot pepper powder on my tongue. I keep it there for at least ten minutes with my mouth closed. It numbs the burning feeling for many hours. I hope over time that the nerves in my tongue will no longer send out the burning feeling. My method is similar to the tens unit people use for their pain.
ConnieAnn
I have not tried the powder yet. I have a spray anesthetic from the
dentist that topically numbs for a short while. Use right before bed
to sleep. good to hear from you. thanks, lw
I found that swishing hot sauce mixed with water also temporarily relieves the burning sensation. I’ve also been advised to use Alpha Lipoic Acid. Does any one know if there really has been any success with this?
you have NO idea how badly I feel for you… My story is quite different really, I have read that alot of ppl have had issues AFTER they have seen the dentist, this is NOT my case. Mine started during my pregnancy about 15 months ago. It just came out of the BLUE. At the time they thought I had thrush, but I did not have the LOOK of thrush, just a slightly white coated tounge. One day during my pregnancy I noticed a very slight burn in my mouth, it was so slight,that it was just sort of a MINOR irritation, but it would come and go, and would happen so few and far in between that I never gave it much thought, I figured it was HORMONE related, and thought well once I have the baby it would go away… WAS I SADLY MISTAKEN, it only got Terribly worse, and became persistant 24/7 persistant! I finally asked my dentist about it, and he knew right away what I was talking about,. and he got the ball rolling in blood work. I then too this INFO too my Endrocrinolist, who treats me for thyroid issues, and rand blood work, who I then took the results too an ENT ( I now have ) and he started me on Neurontin ( which has really been my life saver ) I take 1200 milligrams of Neurontin daily, but I am also taking Alpha Lipoic Acid in big doses for 3 months… I have been 3 wks with very little too no pain , So what ever I am doing, it seems too be working. However, I am notcing that whenever I start my perios, sorry too be so forward about this sticky situation, but when I do get my period, it will flare up BAD… When my period is gone, it goes back too a VERY, VERY tolerable level of pain. The days that I have pain, I eat a peppercioni, and this will give me about 8 hrs of relief ( tolerable ) refief…
I did want too say this much…
After I had Lucas ( which was back on Jan 30th, via c-section ) I was FINE… I had No burning what so ever. My mouth was NORMAL…Then 2 weeks after I had him my entire family got this HORRIBLE stomach bug, this virus was AWFUL… it was so bad we jokingly prayed for death… I got it the worst( lasting for 29 days on and off )… truthfully too this day my stomach is STILL not quite right , anyway before leaving the hospital, the nurse told me too be very careful with it being the winter months and all, and my immune system was no where near what it should be, and I should aviad anyone who was sick … I was told my immune system was shot after having Lukie. Before, during and after my c-section… I was getting high doses of antibiotics for Mitro-Valve Prolapse, I then on top of that got High doses of steroid ( 1 shot every hr for 9 hrs ) too combact the INSANE itching I recieved from the spinal tap… After this is when the BMS started and it i hit me HARD… and wahala… I now am dealing with BMS… Like I said though…it is too where Iam no longer crying on a daily basis… which is a huge relief for me.
I also wanted too ask, and add… are any of you dealing with a god awful taste in your mouth?
When I saw the ENT, he told me just by looking at me that I had reflux, well far be it for me too argue, but I did anyway… I just did not have the tell tale feeling of Reflux, and believe me I know that Burning throat pain of reflux, had it during all my pregnancies, but have baby, Reflux goes away… anyway he put me on Prevacid, he told me that, that film/gross disgusting white film looking crap on my tounge was from stomach acid coming back up , anyway, I have been 2.5 wks of Prevacid 30mgs a day, and I’llbe darned if that white film is not almost gone, and that yuckie taste in my mouth is also a distant memory…just thought I would toss this in here…
Are you taking any meds for your issue( BMS )?
lsw… I have hated the dentist since I was 15, and I
ve hated the dentist ever since, but I now have a dentist who is rather amazing. I have seen so many docs prior too going too him, who looked at me as if I had leparocy, or I would hear… well I have never heard of such a thing… The minute I mentioned My mouth was burning, my dentist was the ONLY one who was able too explain things too me, and get me started on a road of liveable mouth pain. So, he is now my very best friend in the whole wide world lol…
May I ask everyones age? No need too share…but I will be 37 in September:)
Funny, I am sort of chuckling… My mouth is one place I seriously took for granted. If my mouth does not burn, my taste is altered… Good Lord!
Missy
Missy, my BMS started right after I stopped nursing my son and has continued for 5 years. Isn’t it interesting that I also have thyroid problems. I am now used to the burning and it is less severe than at first. I was tested for Sjogren’s syndrome and that was negative. Recently, I was diagnosed with Polycustic Ovarian Syndrome and began taking Glucophage which has made no difference in the BMS. We have also discovered that my B12 is low so we will see if a B supplement makes a difference in the BMS.
Superteach
From: MCKMNL bms-cpt4833@lists.careplace.com
Date: 2007/07/05 Thu AM 09:28:13 CDT
To: ketterer5@verizon.net
Subject: Re: [bms] Does anyone still post or check in here
So good to hear your story…awful, awful, awful! I was taking the
neurotin also (gabba) up to 12 a day. Helped at first, then tapered
off so now it it 2 clonzapam and 2 neurotin am and elavil, clonzapam
and 2 sleeping pills pm with the anesthetic spray. Mine hurts all
the time but chewing gum helps a bunch. I too have thyroid (low)
problems and have had breast cancer with just radiation and the 5 yr
pill arromison. I have no hormones and my hot flashes along with the
BMS have made me suicidal on bad days. I will try the peppercini and
see if it helps any. The most depressing thing besides the pain is
no cure in sight. I would have a hard time taking care of a new baby
on days I just want to die. At least we can share each other’s pain.
lw
I tried the Alpha Liporic Acid…no difference. lw
I have taken neurotin as well as gargled stool softner and everything inbetween, what a waste of money!
I now take Evoxac 2X da. It is prescribed for 3X da but I make too much glue
saliva on 3X
This is in addition to the mouth washing with Neutrogena before brushing.
check this out: (copy & paste)
http://www.evoxac.com
Has anyone checked out the U of Minn Dental links I posted?
Drink lots of water.
Jim
Stool softner?? Uck, it’s just one big mystery. I checked out the
website, will ask my MD. Stress really kicks mine up and only the
gum will help. lw
all this and more. I find it so hard that my friends think I am making it up, not that I talk about it anymore. I would like to show them the gum disease and the Lichen planus and my toothless mouth! i SAID TO THE TOP ORAL SPECIALIST THAT FROM THE TIME i FELT i HAD BITTEN MY TONGUE i MIGHT AS WELL HAVE JUMPED OFF THE NEAREST CLIFF–BECAUSE THERE IS no CURE. sOMETIMES SPONTANEOUSLY GOES ANYWAY. aILEEN
lsw bms-cpt4833@lists.careplace.com wrote:
I was laughing at the stool softener, i agree YUCK, but I was telling my DH,if someone told me that Dog poop had some kindoif enzyme or chemical in it that would cure this,I would find a way too make it a tasty treat roflmao… How gross huh?
The R-Alpha Lipioc Acid, is reallyjust a trial for me, if figure if it works great,if not then, O well…
LW … are you taking any hormone replacement? I just wanna cry after reading your story,you sound like you cannot even catcha break,and I am with you on the suicidal aspect of this. Before i got help, suicide was a daily thought for me!
Ijust noticed this morning my mouth is burning, more so then normal,and I found out I am friggin spotting!! I just had my period 14 days ago… god dangit!
I also had my tubes tied ( in january of this yr during my c-section ),and my left ovary has been KILLING me for days now, I am thinking I had a cyst…Since getting my tubes tied, I have had NOTHING but pain alternating in either ovary… some days right side, some day sleft side, so I am ALMOST conviced this is hormonal for me!
today for me,I am sitting at a 3 with meds… call me greedy,but a ZERO would be wonderful:)
I hope everyone else is holding up ok today:)
Missy
I just decided to look at this website today and am glad I did. I’ve had the symptoms of BMS for over a year now(although no one can diagnose it) I too, have been to several dr.s and dentists who look at me like I’m totally NUTS when I explain my symptoms. Mine happened after having some cosmetic dentistry done(veneers). I so totally wish I could go back and never had had it done!! My sense of taste isn’t altered nor do I have a bad taste in my mouth. It’s just a burning tongue and roof of mouth most of the time. Plus, my teeth feel sore. No one knows what this is like…it’s HELL. I tried taking Neurontin for awhile as prescribed by my medical dr. It didn’t work and made me feel like crap. Another dr. wants to put me on Clonopin, but I’m not into taking prescription drugs. I’m going to try the red pepper treatment and see how that works. Maybe if we all stick together on this we can find help.