Dentist in NYC area for Sjogren's patient with extreme dental problems due to SJ

[Blue Pearl]

[This is my first post here].

I was diagnosed with Sjogren's in '89, along with RA and Raynaud's.  Almost 9 years ago I discovered that I had Lyme Disease and a lot of other Tick-Borne Diseases since I was a very young child (with uncountable known tick bites). 

Because I have had all of this for so long, because the infections are so entrenched in my body, and because there is so much long-term damage, I am experiencing terrible problems of all kinds.  Clearly my saliva glands have been destroyed to a large extent.  I've had the extreme dry mouth and eyes for 37 years.  I have an extreme lack of saliva with resulting terrible dental decay. 

I need a referral or suggestion of a dentist who is experienced with these issues in NYC or the surrounding area (Westchester county, NJ, CT, etc.).

I have had one dentist after another refuse to work with me, due to my extreme dental issues, after having paid them a lot for exams! 

I did find one dentist, who is experienced with these issues, as he works with cancer patients who have the same issue from radiation treatment.  However, he has refused repeatedly to give me a list of work needed (after 3 extraordinarily expensive exams), or give me a cost projection either.  He has been unresponsive, and has been disparaging to me, even when I brought my husband along as a buffer.

Help!  I have a lot of decay now, and am afraid that I will lose quite a few more teeth than I already have.  The work needed has been largely delayed due to this on-going problem with one dentist after another.  I feel really traumatized by it.  It's bad enough to have these intractable problems without adding to it by encountering so many dentists who are awful to me to boot!

Have others encountered this problem??

Please send me any info privately, if need be. 

[Cassi307]

I have not had these kind of dental issues thank goodness. I am so sorry that this dentist is so rude and unprofessional.

You have a absolute right to your records and he has no right to refuse you. I would grab them and head for another dentist who is more professional. If I were in your position I would even consider filing a complaint with whoever oversees dental practices. There has got to be someone out there who treats patients with complicated issues and I hope that you get the treatment that you deserve.

Best of luck and let us know how you made out.

[Blue Pearl]

Thank you, Cassi.  Unfortunately, there are no records to get from this particular dentist, I don't think, except for some x-rays that I have. 

I had 3 exams/visits, at great expense, but he provided no report as to work needed.  I had to bug his secretary for 2 months before he finally gave me a couple of vague paragraphs of the work needed, which was extremely partial.  And there was no mention of cost.

So I then had to bug his secretary at his private office about an estimate of cost for another month (originally I had seen him at a Center for patients with oral cancer).  But in spite of calling repeatedly for a month, I got no estimate of cost at all.  I finally gave up.

Plus, as I said, he really talked down to me in an awful way repeatedly, even in front of my husband.

And the sad thing is that he is the only one of many dentists I went to that seemed to understand how to deal with the issues I have from the Sjogren's.

[SjoDry]

Checked with my friend, Paula Sosin in NYC.

She goes to Dr. Patricia Gonzolez  (212) 689-7199

Hope this helps! 

SjoDry

[Blue Pearl]

Thank you, SjoDry!  Would it be possible for me to contact Paula and speak to her about her experience with this dentist?  Or via email?  Thank you so much.

Blue Pearl

[jazzlover]

Welcome! I hope this DDS can help you!!

[lighthouse33]

In the haste of our busy everyday lives when we
always seem to be on yet another trip to a
medical professional, it is far too easy to let our
daily dental care and periodic checkups slip
through the cracks. Approximately 95% of lupus
patients suffer from some form of oral
involvement. Disregarding the importance of proper
dental care can be a painful and costly error
that in some cases may actually be dangerous.
The mouth is a virtual hotbed for various forms
of bacteria so good dental hygiene is crucial.
Lupus patients should floss and brush their teeth
at least twice a day with a soft brush and
fluoride toothpaste. Mentadent, Arm and Hammer,
and other baking soda based toothpastes with
fluoride are also highly recommended to help ke
ep the mouth clean and bacteria free. Dental
checkups should be scheduled every 3-4 months
or at the very least every 6 months. Lupus
patients may also need more specialized care than
the average dental patient.

It so it is important to find a dentist who has experience wi
th patients with special needs. The oral complications that
face lupus patients are either directly related to the disease or come
about as a side effect of medical treatment.

Special problems require individual
ized care from specialists in th
e practice of dentistry. Dental
specialists that you might want
to look at are those who practice Oral Medicine, Oral Pathology,
Oral Surgery, and Periodontics. Tips for picking a good dentist
include 1) making sure that your
dentist has experience with or
knowledge of lupus or autoimmune
diseases. and 2) that your
dentist not only takes a full medical history but al
so has an updated list of all your medications.


Lupus patients suffer from the following mouth
symptoms: dry mouth, cracked lips, bleeding
gums, sore jaws, gingivitis (gum disease), cracked tongue, oral lesions,
lichen planus, ulcers (tongue, mouth, gums and cheeks), and candidias th
rush infections (yeast infections). Those patients also suffering from TMJ or oral
scleroderma can have tightening of the mouth and jaw
which can result in more absce
sses and cavities. Patients with
Sjogren's Syndrome usually have
severe dry mouth which results in
massive decay, dental infections,
thrush (yeast infections), and
gum disease. Patients with Mitrovalve Prolap
se (MVP) and Antiphospolipid Antibody Syndrome
require antibiotics before dental
procedures to protect against life threatening infections.

Dry Mouth: Salagen, Artificial Saliva Sprays, Sugar Free candies,
ice chips, non-alcohol dental rinse/mouthwash, and drinking plenty of water and
fluids throughout the day.

Oral Sores: Orabase ointment (numbs the ar
ea and promotes healing) or Oragel (if you
just want an anesthetic), a paste made up of
Mylanta and baking soda, ice chips, baking
soda rinse (1 tsp. baking soda per 8 oz. water), nutritional drinks
such as Ensure and Boost to provide you with the nutrition you are
missing from not eating due to
discomfort, cool drinks and plenty of fluids to rinse out bacteria, and
a hydrogen peroxide rinse (50 /50 mix) to prevent infection.

Canker Sores: Orabase Ointment (numbs the area and promotes healing),
over the counter canker sore remedies such as Zilactin HP, keeping the area clean,
applying protective ointment such as Vaseline, and
avoiding irritating foods/beverages/makeup.

Frequent Decay and Infections: Baking soda rinses (1 tsp baking soda per 8 oz. of water),
various dental floss tools, electrical toothbrushes,
artificial saliva substitutes (sprays and
medications), non-alcohol rinse/mouthwash,
night guards, hydrogen peroxide rinse
(50/50 mix) and WaterPik tools

And much more information at:

lupus.org/webmodules/webarticlesnet/articlefiles/2325-LupusGuideDentalCare.pdf

[jazzlover]

I hope Pearl got the info she needed regarding names of dentists.

[Blue Pearl]

Actually, I could really use more info.  I got the name of one dentist.  When I went on her website, it talked a lot about cosmetic dentistry, which is not exactly what I am looking for.  That is where dentists really make a lot of money. 

I am looking for someone to help me with my disintegrating teeth from Sjogren's.  My situation is really extreme.

Anyway, I would really appreciate more referrals and the ability to ask someone about their experience with the particular dentist, where possible.  Thank you!

[lighthouse33]

I'm in NC so I can't give a referral to a dentist but I did find this dentist on a google search:

The Salivary Gland Center in Columbia University?s School of Dental and Oral Surgery

Dr. Mandel started the Salivary Gland Center with SDOS professor emeritus and special lecturer Dr. Irwin Mandel, who was interested in the biochemistry of saliva and its anti-bacterial, buffering, and digestive activities. Dr. Louis Mandel did research in saliva when he was a graduate student in oral surgery. Now, as an expert in dry mouth, salivary gland stones, and even cat scratch fever (which may resemble a salivary gland tumor if a nearby lymph node swells from the infection), Dr. Mandel sees about 10 patients a week in the center.

To help publicize the center, Dr. Mandel several years ago began writing a newsletter on salivary gland problems, which he sends to every physician and dentist at Columbia-Presbyterian Medical Center and to New York City specialists in oral surgery and periodontal disease. The newsletter helped him increase the number of center patients, many of whom suffer from Sjorgen?s disease, an autoimmune disorder that destroys the salivary glands and affects 3 million Americans.

http://www.cumc.columbia.edu/publications/in-vivo/Vol1_Iss5_mar11_02/profile.html

They work with patients with special needs.

http://www.nyu.edu/dental/patientinfo/

[Blue Pearl]

Thank you so much, lighthouse!!  I will look into these two places.

Dr. Mandel at Columbia Presbyterian sounds fabulous!  The only thing is that it looks like it isn't dental work per se.  But I have to look into it.

NYU Dental School has done terrible work for a friend of mine, but perhaps the division that deals with people with oral cancer, who have a similar dental situation to Sjogren's patients, would be good.  I'll have to investigate.

Thank you again for your research on my behalf.