Posted , 10 users are following.
would like to know if anyone has a severe case of bms? Had it gone two yrs.it gets worse by the day.swollen tongue problems with talking, twenty four hrs of sensations along with burning..I chew gum 24 hrs a day.it helps a little with sensations . Has anyone been to Cleveland clinic, or john Hopkins? I live in Philadelphia exhaustedthe medical community here. Had no succes both medically or alternatively
0 likes, 17 replies
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jane74920 ruthann_55866
Posted
Hi Ruthann,
My husband lost his sense of taste about 2 1/2 yrs ago due to a dental procedure. The medical community is useless. They either do not believe him or say he can'c lose his sense of taste without losing his sense of smell. Almost immediatley he also got a severe case of tinnitus and dysgeusa. He has tried Lorazapam which does not cure anything but seems to make things more tolerable. Another Dr. put him on Gabapentin which seemed to actually make things worse. He is now trying Clonazapam but so far no help at all. I wish you luck. Please let us know if you find any relief.
ruthann_55866 jane74920
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Been dealing with this for two yrs. I tried all the above that you mentioned,nothing work. Lost count of how many dresses I've seen. Useless. Burning is one aspect, but the sensation and swelling another. The problem is through my research some of the feelings don't seem to relate. To bms. As it gets worse I think the worst.
amkoffee ruthann_55866
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The only thing I can offer is that there is an excellent facebook site for this condition where you can share your misery and hear what others have tried. It's worth giving it a go.
amkoffee
Posted
I'm a member of that group too. And you're right it is a very good group.
victoria999999 ruthann_55866
Edited
ruthann_55866 victoria999999
Posted
It stated 2 years ago. Ihad an ulser removed from my tongue. Life has been a nightmare ever since. I have never had acid reflux. I believe mine is a nurapathy of the tongue. The ent caused nerve damage when he removed the ulser. You name it I tried it. chalodapin,nuratriptaline gabapentin, lyrica. Low level laser, acupuncture,hypnosis. I am taking pramapecsol, it used for Parkinson's and restless leg syndrome? I don't think it works
natallia04776 ruthann_55866
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My burning mouth or tongue has started in September 2016 ! After I finished breastfeeding. It gets worse by the afternoon and come down to the night. I'm going to see a Mouth Specialist on Monday! !! Very long waiting list if it's not a Cancer here in uk. I think to myself it's hormones related.
amkoffee natallia04776
Posted
It is also possible it's fungal related. Thrush is a known and common fungal infection of the mouth. It's a type of candida the same kind of fungal infection we call a yeast infection. But there are other kinds of fungal infections we can get in the mouth that are not thrush and do not have the white splotches that thrush has. Sometimes a fungal infection of the mouth will leave no evidence whatsoever. I've just recently learned all this
kay92558 amkoffee
Posted
Hi I have tried anti-fungal treatment which did not help at all unfortunately. I finally persuaded my Consultant to give me a course of anti-viral medicine. He was not willing to offer me the blood tests to prove either shingles or herpes was causing the symptoms and he only gave me the lowest dose for a period of 21 days. However my 'BMS' improved considerably. The blisters and cracked tongue, sore throat etc. has eased and some days I hardly notice it. It has not gone completely and he would not consider further treatment so I have now been referred to a large London research and teaching facility. They may be more forthcoming with carrying out the required tests which, at the very least, will rule OUT the possible causes. I will keep you posted as to how it goes. I am not willing to just go away until all treatable medical conditions have been ruled out.
kay92558 ruthann_55866
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I am waiting to hear if our Health Trust will agree to the test and I shall be very unhappy if they decline as this could help so many people. I would be willing to try the anti-viral medication anyway.
Has anyone else undergone the test? If so what was the outcome and/or have you used anti-viral medication. If so, did they work, at what dosage and length of treatment?
ruthann_55866 kay92558
Posted
I do have herpies simplex. I was put on vatrex, one script. It didn't take away bms. Maybe I wasn't on it long enough. Aside from the burning I get horrible sensation on my tongue and roof of my mouth. Sometimes it feels electricfied. Other times like dead jelly in mouth. Other times like raw meat. Do you experience any of that?
kay92558 ruthann_55866
Posted
Yes, all of the above. Also deep cracks in my tongue and white blisters which then go into red sore areas. Now affecting my throat and cheeks and particulalry tip of tongue. I am currently taking Alpha Lipoic Acid and these do seem to help. You may be right about the treatment not being long enough. It seems from the research that the anti-virals are taken for at least three months. May be worth trying again? I will keep the Forum updated on any progress I make. Good Luck
kay92558 ruthann_55866
Posted
Have just seen my consultant who has told me that they will not carry out the saliva test for the Herpes Virus, nor will he contact Professor Nagler in the States, as the consult will be charged to the NHS Trust. He had not looked at all the case studies I sent through where a high percentage of the group were pain free within ten days. I feel that BMS is viewed as an inconvenience and not as an extemely painful condition. He has not had one case where he has successfully treated and/or cured BMS, nor does he believe that any of the medicines or 'home cures' work and can only recommend Cognitive Behavioural Therapy. I think we are all aware that we need to keep busy and occupied when our mouths are particulalry bad!! I have had Neuropathy (which seems to be the general opinion as to the cause of BMS) before and was given Amytriptyline which worked so have persuaded him to prescribe a six week course of that. If that does not work I shall push to have a course of anti-viral medications. I am not willing to 'learn to live with it' as I have been told to, before exhausting all options. Perhaps we need to put some pressure on our medical professionals to offer BMS sufferers tests that may offer a cure for this (non self inflicted) illness??
amkoffee kay92558
Posted
lisa33970 ruthann_55866
Posted
kay92558 lisa33970
Posted
eventually I was referred to Guys in London who carried out lots of tests on my blood all of which were clear and a saliva swab which they only tested for a fungal infection. My next visit when I again requested a viral saliva swab I was denied, told to visit a microbiologist (through my doctors) to be tested and discharged. Not a great help!
I saw my GP and he said that I undoubtedly had Shingles and has prescribed Acyclovir, a strong two week course. Within two days the soreness/burning was easing and no further blisters developed. Upon stopping the medicine and a week or so after I experienced another attack and repeated the course of Acyclovir. Not such a good outcome this time as I still had some burning, sore patches, but much better than usual. However, I have been off the second course of Acyclovir for two weeks now and most days my tongue/ mouth is NORMAL. Yeah!!! To be pain free even for a few days after two and a half years of misery is wonderful. My GP told me that I may well get repeat attacks but I can take another course if necessary.
These medicines are fairly harmless (of course there can be side effects but I did not have any) so if you have not been offered them I would suggest you really have a strong discussion with your GP and at least try them. They are useful for both Shingles and Herpes Simplex. Wishing you all the best of luck. I truly sympathise.
Kay
lisa33970 kay92558
Posted