I finally had the time to update Go4hope. And what an update... The Forum has been brought up to date with several versions now offering:

• Message formatting with various font styles and sizes as well as allowing quoting, code display, image posting and automatic URL linking
• Support of standard and extended BBCode tags and controlled HTML tags
• Polls can be simply added to posts
• Email notification of replies to your topics
• Powerful topic subscription capability
• Original emoticons to portray emotions
• Unlimited members
• Personal profile creation
• Post counting and administrator-definable ranks for users
• Email-like private messaging system
• Supports local, remote and uploadable avatars
• Topic editing
• Mass delete/move/lock/unlock of posts
• Topic splitting
• Option of auto-pruning of old or unanswered messages on a per-forum basis
• And a whole lot more...

Andreas, 28

I continuously receive emails from people literally all around the world, telling me about there experiences with BSM, where to seek help, thanking me for the site etc. It brings me great joy, to tell these people to go and post in the Forum, and a few days later I can see them talking to the other users of go4hope.

Acknowledging that you are not alone with this is truly one of the biggest boosters I've experienced so far.

So keep them emails comming ; )

Andreas, 28

I'm glad to see more and more registering at the BMS Forum.

Sharing information and support can help anyone through the rough periods of this ailment. Once again I hope more will come to the Forum and sign up. Not only for your own sake, but for all of us sharing important experience about Burning Mouth Syndrome.

If you have Burning Mouth Syndrome, a good network can really make a difference.

I have finally found the time, and required the technical skills to design a whole new site. This is going to be the new and improved resource for Burning Mouth Syndrome for many years to come.

This site will be a fully working construction site for a while to come. So many new additions will come.

I have build a chat room, where people from all over the world can now communicate and hopefully get a feeling that you are not alone with this.

Besides the new Guest book, I have designed a new state of the art Message Forum.

Feel free to write me at info@go4hope.org with any question or comment you might have.

Andreas Schroll, Webmaster - Go4hope.org

I have registered a new name - go4hope.org - which will be the official name in the near future. I've chosen .org (organization) over the current extension .com (commercial) because that is what we are - an organization of people, who share experiences of some of the darker side of life. It's always good to talk to somebody who know exactly how you feel.

The new site is currently published at http://www.it-c.dk/people/doktordata/go4hope and is fully functioning.

The first additions count:

- A chatroom :)
- A brand new state-of-the-art Message Forum (coming shortly)
- A new Guestbook

No more slow Message Board, or using the Guestbook as a forum. Now it's time to communicate!

Have in mind that this is the absolute first version of go4hope.org, and that all the software used here is freeware. That is why there are banners around, but just ignore them, until I upgrade further.

I will return with more information in a couple of days, when the site is moved, and the Forum activated.

See you in the chatroom.

Hope this finds you well
Kind regards
Andreas Schroll, 26, Denmark

In two days I'll be 26 - 9 days and the calendars will say 2003, and we'll have a whole new year to fulfill our dreams and wishes in.

As for Go4hope, I have good news. I have found a way to get the Homepage hosted elsewhere, which means that I will get the saying over when and what will be changed at the site. So my number one New Years Resolution is to upgrade Go4hope with a new sophisticated Message Board, a Chatroom and an online Questionnaire... I know I've said it before, but it will happen.

Furthermore a warm welcome to all the new people who have found their way to the Homepage. I'll hope you will find valuable information here. It's nice to know we're not alone with this.

As for myself, I'm going back to school in February. I'm going to get a 2-year Master's Degree in Information Technology. So it's only a matter of time before I can do everything concerning the Homepage myself : )

That's all for me for now. Hopefully I'll be back soon with news about an upgraded interface and new features at www.go4hope.com.

Last but not least - thank you so much for all the emails I've received during the year. You make it all worth while!

Kind regards, Merry X-mas and a very happy New Year from me.

Andreas Schroll, DK, 26 in 2 days

I have a lot of ideas and no funds:

- A new, and more advanced Message Board. The existing one is getting very heavy to load.
- An online questionnaire which would be able to gather a lot of useful information over time.
- A chat-room where you can discuss matters real-time.
- And much more

I got about 20 replies which is okay, but now I still have the problem - how do you collect money from people all over the world in order to get this project started? I don´t have a clue...

My guess is it would cost around 2.000$ to have it all made. I hope to get some feed-back on this.

Anyway - WELCOME to all the new sign-ups to this newsletter. And you´re so very welcome at Go4hope, where everybody have at least one important thing in common! And one common goal!

I haven´t found any new information on the web about BMS, but again - if any of you come across any, please let us know.

I guess that´s it for now - please keep writing me with any question you might have, and I´ll continue doing my best to answer them as fast as I can.

Hope this finds you well
Kind regards
Andreas Schroll, DK, 25

But she agreed that the psychological aspects are very important in the ways we deal with our symptoms. The less frightened you are of them, and let yourself be affected by them, the less the symptoms will feel, and that can only lead to a good circle.

I also talked to her about cutting down on my medication. As I've written before I am taking 3x0,5Mg Clonazepam and 3x300Mg Gabapentin daily. I'd imagined that I would cut down on them both slowly, but she said it was very important to start with on, and then the other. Apparently Clonazepam is somewhat addictive and the dosage has to be downsized very slowly to prevent side effects, so she suggested that I started with Gabapentin, which you can stop in a matter of days, whereas Clonazepam is best stopped over months. Furthermore this way of doing it, can help detect, if one medication is better than the other. For example if you start getting symptoms again cutting down on of them, but not the other.

However I feel more comfortable stopping with Clonazepam first, and the Gabapentin-advice was only from an economic point of view. I don't know how it is in other places but Gabapentin is very expensive in Denmark, being a fairly new drug.

So from now on I am "only" taking 2x0,5Mg and 1x0,25Mg of Clonazepam daily and no change in the Gabapentin. This is going to take a looong time for me, but it's a start.

Finally - the new Grushka article is now posted on Go4hope under "Latest research". Maybe not so much was new, but I like the fact that they are more and more beginning to acknowledge the pain sensations we get, and realize that BMS can be equal to hell. It's well worth reading.

Please keep in touch and write me with whatever you might have of questions, advice, info and so on.

Hope this finds you well
Kind regards
Andreas Schroll, DK, 25

PS. just so all of this, isn't always about BMS and "bad stuff", I thought some of this might bring a little smile to your lips ;)

- All those who believe in telekinesis, raise my hand.

- I almost had a psychic girlfriend but she left me before we met.

- How do you tell when you run out of invisible ink?

- Support bacteria - they're the only culture some people have.

- Depression is merely anger without enthusiasm.

- Ambition is a poor excuse for not having enough sense to be lazy.

- Everyone has a photographic memory. Some just don't have film.

- The shin: a device for finding furniture in the dark.

- Who is General Failure and why is he reading my hard disk?

- What happens if you get scared half to death twice?

- Why do psychics have to ask you for your name?

- A conclusion is the place where you got tired of thinking.

- Experience is something you don't get until just after you need it.

- Why is the hardness of the butter proportional to the softness of the bread?

- Why do bills travel through the mail at twice the speed of cheques?

- A conscience is what hurts when all your other parts feel so good.

A trip like that is an amazing experience and puts a lot of things in perspective. And having BMS, in my view, perspective can be a very good thing to have.

Well, having been away, I haven’t been able to do any research at all, but I have spend a lot of time, in some funny little internet-places answering mails from some of you. Furthermore I am very glad to see how many newcomers have signed up to this newsletter. It really shows me and you that we are definitely NOT alone with this ailment.

Backing this up, is that I started this homepage one year ago almost to the date, and today it has had more than 25.500 unique visits. Still think you’re alone?

I got some mails concerning the Message Board, because someone meant it could be organized better. I have given this a lot of thought, and I must admit, that I still believe that the date-sorted strings combined with the search-function, is the best way to go. Furthermore, with the amount of postings accumulated already, it would be a difficult task to change not to mention expensive since it’s not something I can do myself.

But if anyone of you have a great idea for a more overskueligt way to go, I would very much like input and ideas, but please elaborate on them, so it’s easier for me to visualize the ideas you might have.

The point of this Newsletter is mostly to let you know that I’m back, and that I hope you’ll still write me if you come across something new regarding research, or something else interesting that others might also benefit from knowing.

I have an appointment at the Copenhagen General Hospitals Painclinic, from which I still receive my medication (Clonazepam and Gabapentin), on August 6. You can read about my last visit a year ago, in the “News-section”. This time I plan to ask as many questions as I can concerning BMS, the research going on, and the medical treatment used and so on. I know for a fact that they are treating 20-something patients with BMS besides myself, who more or less just call them for prescriptions when I need them, so they should know what they are talking about…

I will return with the result of my visit.

Finally – I checked in on Grushka’s and Bartoshuk’s homepage www.tastelab.org, and it hasn’t had any updates for a year now, and still isn’t finished! I haven’t written them for a long time, since I feel they don’t want to cooperate with me very much. I sent a questionnaire to both of them with 25 questions concerning BMS, and for some reason they took offence to it. I hope some of you will write them and ask how the research is going.

Hope this finds you well, keep in touch
Kind regards
Andreas Schroll, 25, DK’

PS. I have also updated “My Situation” if you want to read how it’s going with my own BMS.

Well, this is the last newsletter before I begin my journey to Central America. I´ve sub-leased my flat, temporarily quit my job and now it´s time for some adventure. I will be back July first. This does not mean however that I cant´ answer mails - I will check in at Go4hope.com and my mailbox frequently.

I´d like to start of with expressing my happiness regarding the many BMS-sufferers who find their way to Go4hope.com, and also sign up for the newsletter. It´s so good to see that we are definitely not alone, and that
we find some peace, just by experiencing this. Also many thanks for all the
kind mails I´ve received. I´m sorry if I haven´t been able to reply to all
of them, but I do my best to keep up. About the mails - a lot of you write
me, asking medical questions that I really want to answer, but often, I can
only answer due to my own personal experiences, and when that´s the case,
I´m very careful not to give any medical advise, since I have no medical
education what so ever - not in it´s literal sense anyway.

As for the Message Board - I´m also very pleased to see the pleasant tone
that is kept in there. Let´s keep it that way. I have had to remove a few
postings though. Mainly some that were negative towards other postings,
opinions or persons - that´s not the idea of this forum, and it won´t be
accepted. Also I have removed one or two postings containing advice or
warnings against certain medicine. If you are not a doctor or have some
other medical education, it´s very dangerous to interfere in others
treatment of BMS, based only personal experience, even though the intention
is as good as it can be. I believe when trying new medicine the hope, and
expectations of it helping, do half the work, so that shouldn´t be taken
away, because of something someone might have read on the net, or because
you´ve had a bad experience with that drug yourself. Advice is good -
judgements are bad.

Since my last newsletter, I have taken contact to Linda Bartoshuk once
again, and she wrote me that she and Gruska are doing so me very interesting
research at the moment. I asked for abstracts of the research, but
apparently that was still to early. But surely something that can keep hope
alive for all who suffer from BMS.

I have also looked high and loon the Inet without much luck to see if
something new had come up, but the best information I find, is at the
Message Board where I read about so many different experiences and so many
things that have helped, that gives me more trust in the fact that BMS can be treated/beaten, and that you should never give up. It´s our own bodies
that have created these pains, so what better instrument to make them
disappear again. Combining the power of the mind, the power of the right
medication or other helpful remedies, is still my best advice to anyone with
BMS who wants to claim their life back!

I guess that´s all for now. I send you all a BIIIG mental hug, and hope you
will continue to make Go4hope.com the biggest and best resource for any
BMS-sufferer on this planet to come to, because of the continued loving energy that I feel, we have created in there.

Hope this finds you well, kind regards
Andreas Schroll, 25, DK

Hope this finds you well
Kind regards Andreas

The last month has bid me with a major computer virus, that has deleted all of my harddisk including emails from - and addresses to all of you. That made me really sad, but luckily I did make a backup of my harddisk before I had to format it, but I'm having problmes getting the files unpacked again, so I can't send out any newsletters until I HOPEFULLY get this problem fixed.
I think I recieve emails with virus-attachments at least once a week to my go4hope mailbox, so maybe it's time for a viruschechk for some of you. Probably the antivirus-producers that make the viruses themselves ;)

I still hope that other sufferers as well, will start reaching out to the researchers, having them come to Go4hope, and answer questions from the messageboard, and to search the net, for new research done on the subject. I don't have as much time as I would like to, to do it alone.

That's it from me this time. Once again thank you all, for the nice mails and messages :) It means a lot to me...
Andreas, DK

I'm sorry I've had to do this, but I'm not finansially able to pay for it myself. I feel bad about this because fewer people will have the opportunity to try the inventions. But they will still be available for purchase, so just write me an email if you want to now how to get them.

So far I've had a lot of positive response, but also a few negative. I guess there will always be some people who are suspicious and negative claiming that I (and men in general) don't have BMS, and that I'm just trying to scam people, making money of of people's ailments and misery - well that's bull****, and I hope my engagement in this will prove otherwise.

I've talked to Grushka again, and she said she would come the Message Board and answer some of our questions, which I look foreward to a lot.

Furthermore I've written two interviews and sent them to both Grushka and Bartoshuk, so I'm hoping they will answer these questions as well.

Finally I hope you will all help spread the word of this place, so that our network can keep growing across borders and on to the rest of the world.

I will keep working on getting more of the latest research done, and make some other small changes on Go4hope.com.

Andreas

My friends, I wish you ENOUGH.
From Katrina

Sounds like the research is still going strong there :) Andreas

Symptoms
BMS can affect any area of the mouth. It is characterized by the sudden onset of pain and burning, sensations that may build in intensity over time. The tip of the tongue is usually affected, and the pain is often accompanied by taste phantoms. Taste phantoms are taste sensations that occur in the absence of stimuli: a patient will report a bitter taste in her mouth when there's nothing there. In fact, one of the reasons BMS is so difficult to diagnose is the absence of visible abnormality in the mouth.

The difficulty of diagnosing BMS is one of the reasons its rates of prevalence are difficult to determine. BMS may strike 2.6% of the general population (Grushka & Sessle, 1987), but, among women seeking treatment for symptoms of menopause, the incidence of oral burning and related disorders is higher--over 40% are affected (Wardrop, Hailes, Burger & Reade, 1989). One study of BMS found that over 60% of diagnosed BMS patients also suffered from taste phantoms (Grushka, Sessle & Howley, 1986); in our lab, the most common taste phantom BMS sufferers report is a "metallic" taste.

Sensory testing has revealed deficits in taste (Bartoshuk et al., 1999) and heat pain tolerance (Grushka et al., 1986) among BMS patients. Touch and sensations of warmth and cold are, apparently, unaffected. The nature of BMS complaints makes topical anesthesia an attractive angle to pursue for pain control, but it is ineffective. One of the diagnostic tools for BMS, in fact, is applying topical anesthesia to the affected area and waiting to see if the pain gets worse: it will (Ship et al., 1995).

Though many attempts have been made to explain the causes of BMS, none was ever able to explain the full constellation of symptoms or account for the spontaneous remissions known to occur in about half of all patients. We have proposed a model, based on our recent studies, for the etiology and pathogenesis of BMS.

Our research
Our laboratory work (Bartoshuk et al., 1999) suggests that BMS may be a sensory phantom, that the burning sensations are created centrally in the nervous system: this is why the tongues of patients with BMS are not visibly different from those without complaints. Sensory phantoms are relatively common; many people are familiar with the phantom limb sensations that can occur in the wake of amputations but are unaware that disorders such as tinnitus (ringing in the ears) are also sensory phantoms.

We believe BMS and other oral pain phantoms result from damage to the taste system. Our research suggests that taste normally inhibits oral pain; many sufferers of BMS know their symptoms ease when they eat, chew gum or sip cold water. We believe there is a basis for this sort of phenomenon as, during evolution, animals with damaged tongues (whether from disease or fighting), would have continued to be able to eat if tasting food inhibited the discomfort in their tongue. When the taste system is damaged, it can no longer inhibit oral pain and certain individuals (especially genetic supertasters) are more likely to experience pain phantoms (like BMS) as a result.

Viral infections are the major source of taste system damage. The nerve that carries taste sensations from the front of the tongue to the brain passes through the middle ear, a site quite vulnerable to damage by cold and flu viruses. Fortunately, the body can repair this damage, and this may be why burning mouth syndrome often disappears by itself. Head trauma can also cause the symptoms we associate with BMS, as do a variety of medications. Some medications, for example, have been implicated in taste loss: this is the sort of trigger that may cause BMS in someone genetically susceptible.

Supertasters
Genetic variation in taste was discovered accidentally. In 1931, a chemist named Fox synthesized phenylthiocarbamide (PTC) and, when some blew into the air, a colleague commented on how bitter it tasted; Fox tasted nothing. Fox pursued this quirk with a geneticist, and they called their discovery \"taste blindness.\" Family studies demonstrated that tasting is the dominant trait; scientists of the time believed that nontasters lacked the kind of bitter taste receptors that would respond to PTC.

Our own work with this genetic variation began in 1975. We use PROP in our research as it's chemically related to PTC and shows the same pattern with regard to genetic taste sensitivity. PROP is also used in large quantities as a drug to treat a thryoid disorder, so we know the small amounts we use to test patients are harmless. We've found that the differences between nontasters and tasters are much more extensive than initially thought, and that some tasters are much more responsive to PROP than others. We believe these "supertasters" carry two copies of the dominant allele. About 25% of the people in the United States are supertasters, and 25% are nontasters; the remaining 50% are medium tasters, more sensitive to certain oral sensations than nontasters, but less sensitive than supertasters. Women are more likely to be supertasters than men, and Asians are more likely to be supertasters than are Caucasians.

Dr. Inglis Miller and Dr. Mark Whitehead are anatomists who made discoveries that have led to our current understanding of BMS. They studied fungiform papillae, small structures on the tongueUs surface that hold taste buds. These fungiform papillae are easy to see: they do not hold onto dye the way the rest of the tongue does, and swabbing food coloring across the front of the tongue leaves them pink circles against a colored background. Supertasters have the most fungiform papillae and nontasters the fewest. Each contains about six taste buds, with each bud surrounded by pain neurons. This association between taste buds and pain neurons means supertasters not only perceive the most intense tastes but also the most intense oral pain and irritation (chili peppers or alcohol, for example). Incidentally, supertasters also perceive the most intense oral touch sensations from food; since fat in food produces touch sensations (oily, viscous, creamy, thick), supertasters perceive fat in food more keenly than nontasters or medium tasters.

Our research suggests that individuals who suffer from BMS are likely to be supertasters.

Why is burning mouth syndrome related to menopause?
BMS is most likely to afflict post-menopausal women for two reasons. First, as noted above, women are more likely to be supertasters than men, and BMS affects supertasters. Second, hormones affect taste (particularly bitter) in women. Sensitivity to bitter tastes varies with the menstrual cycle, reaching a maximum early in pregnancy. As many poisons taste bitter, we suspect this hormonal shift is one way nature helps protect a developing fetus from harm. At menopause, sensitivity to bitterness diminishes for hormonal reasons, and can have the same result as a cold or the flu acting as damage to the taste system.

Clonazepam: Potential treatment
Dr. Miriam Grushka discovered that Clonazepam (Klonopin) treats burning mouth pain in about 70% of patients (Grushka, Epstein & Mott, 1998). Dr. Grushka's research suggests a beginning dose of 0.25 mg per day. If this is ineffective after one week, she usually recommends an increase to 0.50 mg per day. If the new dose is ineffective after another week, an increase to 0.75 mg per day is suggested. Higher doses are usually ineffective and may produce unwanted side effects (drowsiness, etc.). In these cases, small doses (e.g., 50 to 300 mg per day) of gabapentin may be helpful. Clonazepam, like all prescription drugs, should only be used under the direction and care of a physician. For more information about treatment, contact Dr. Grushka at 416-488-1776.

References
Bartoshuk, L. M., Grushka, M., Duffy, V. B., Fast, K., Lucchina, L., Prutkin, J., & Snyder, D. (1999). Burning Mouth Syndrome: Damage to CN VII and Pain Phantoms in CN V. Chemical Senses, 24, 609.

Fox, A.L. (1931). Science News Letter, 9, 249.

Grushka, M., Epstein, J., & Mott, A. (1998). An open-label, dose escalation pilot study of the effect of clonazepam in burning mouth syndrome. Oral Surg Oral Med Oral Pathol Oral Radiol Endod, 86, 557-561.

Grushka, M., & Sessle, B. J. (1987). Burning mouth syndrome: A historical review. The Clinical Journal of Pain, 2, 245-252.

Grushka, M. (1987). Clinical features of burning mouth syndrome. Oral Surgery 63, 30-36,

Grushka, M., Sessle, B. J., & Howley, T. P. (1986). Psychophysical evidence of taste dysfunction in burning mouth syndrome. Chemical Senses, 11, 485-498.

Ship, J. A., Grushka, M., Lipton, J. A., Mott, A. E., Sessle, B. J., & Dionne, R. A. (1995). Burning mouth syndrome: an update. Journal of the American Dental Association, 126, 842-853.

Wardrop, R. W., Hailes, J., Burger, H., & Reade, P. C. (1989). Oral discomfort at menopause. Oral Surgery Oral Medicine Oral Pathology, 67, 535-540.

Futhermore, I got this email from Grushka today, showing that research is still being done, and that new results are still at hand...

"Hi Andreas: I am so pleased that you have set up your web site to provide accurate information to sufferers. I am still working with Linda Bartoshuk at Yale and extending our research to include those individuals who not only have mouth burning and/or taste alterations, but who also have tooth pain. The results are again exciting ( we have recently published an abstract of this work!) and shows that taste disturbance is again involved as is the predilection for supertasters.

I am also involved in other research in Vancouver, British Columbia looking at the possibility of viral involvement in BMS. This research is still in its infancy, but I suspect may eventually prove to be exciting as well!"

With regard to treatment, I am currently trying out other combinations of meds, and think we may be on to an effective combination for those individuals who are
not helped by the clonazepam/gabapentin one. Which of course, brings up other possibilites for causation of some types of BMS!

I suspect that the literature and research in this area is going to become even more exciting in the near future!

Can I be of assistance by answering commonly asked questions on the website? Let me know.

Best regards,
Miriam Grushka

(I will do what I can to get the latest research published here on the page - Andreas)

Well the really news is, that I've finally been able to get the chews. Those are the ones that has caused med the most trouble, but now they are ordered, so when they arrive - GO4HOPE.com is airborne :)

Andreas

"Your website looks gorgeous! Keep up the good work and let me know how I can help. Miriam Grushka"

Thank you very much Miriam I will ;)

Andreas

2. At least 15 people in this world love you in some way.

3. A smile from you can bring happiness to anyone.

4. Every night, SOMEONE thinks about you before they go to sleep.

5. You mean the world to someone. If not for you, someone may not be living.

6. You are special and unique.

7. Someone that you don't know even exists loves you.

8. Even when you make the biggest mistake ever, something good comes from it.

9. When you think the world has turned its back on you, take a look:
You most likely turned your back on the world.

10.When you think you have no chance at getting what you want, you probably
won't get it, but if you believe in yourself, my experience is that you
WILL get it sooner or later.

11.Always tell someone how you feel about them; you will feel much
better when they know.

12.If you have a great friend, take the time to let them know that they´re
great.

The doctor I talked to, said that they didn't like to use Clonazepam because it was habbit-forming? So - what if it works? And the combination of Clonazepam and Gabapentin, as Groushka suggested me, had never been tried... My impression was that they usually used Opiods, or "just" worked with the psycological aspects, which IS very important, but in my opinion no way near enough if you still have heavy physical symptoms.

So all I got was an appointment with a special pain-psychologist - in July! And a stronger impression that I/we, often are our own best advicers. Not saying that no doctors can help, because a lot of research IS going on, for example by women like Miriam Groushka and Linda Bartoshuk, and in time, I believe the medical world will be much more prepared to deal with Stomatodynia. But until then, we must take advantage of the information we can provide for each other...

I wanted to get the name HOPE.com, but it was already taken. I managed to get GO4HOPE.com registered, and it isn’t all that bad actually. I've already established contact to different companies, that seem willing to produce the products. They have all been very interested in the project, and very cooperative. I owe a big thanks to Lis, Ilse and Niels ;)