Author Topic: Male under 40, symptoms appeared out of the blue, very concerned  (Read 7326 times)

ashler

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Hi,

this is my first post in the forum. i am a male, 37 years old now.

i have not been (yet) diagnosed with SS (all blood tests negative) but next week I am going for a gammagraphy as I have a dry tongue for the past 2 years. Been to 20 to 40 doctors and they don't know what it is.  It came out of the blue in June 2012, but I relate it to a sexual encounter I had with a girl in February of that year. Basically my tongue is dry, a white film covers it, saliva is very thick and sticky, and tongue is very sore sometimes. Teeth marks in the tongue border area also present and tongue seems to be bigger than it should be (macroglossia). I am not a smoker.

as the person who opened this topic I am very concerned about HIV-SGD or DILS (a syndrome that mimics SS but its seeing only in HIV+ people) despite my 7 HIV negative tests in the past two years.

a full detail of my case is documented here:
http://www.medhelp.org/personal_pages/user/2076759

any comments of persons (specially males under 40) with similar symptoms will be appreciated.

anyone with similar, chronic symptoms?

anyone has here been diagnosed with SS despite all blood tests (ANA, etc.) being negative?

thanks for reading.
Male, born in 1977. sicca symptoms started in June 2012 (I was 35). White coated tongue. Macroglossia. Salivary glands disorded confirmed. Lip biopsy results match the Grade 2 of the Chisholm & Mason criteria.
Tongue photos http://www.medhelp.org/user_photos/list/2076759

Tharrell

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Re: Male under 40, symptoms appeared out of the blue, very concerned
« Reply #1 on: October 10, 2014, 06:40:08 AM »
Hey ashler, welcome to the board!
I hope someone with more experience will speak up soon.
I'm not a doctor by any means, I only have personal experience.
About your HIV question. It looks like you had every HIV test under the sun and all is negative! Breathe a sigh of relieve and let it go. It seems you are very fixated on it and I can understand your fear. I would think if you had HIV the symptoms would have showed up in full force by now and you would be much sicker!
I looked at the blood tests you posted on the other side and they do look out of wack. Did the doctors explain to you why?
There are a number of us that test consitingly negative and still have sjogrens. They are still being treated for sjogrens.
Some here have tested positive and then their blood work goes negative only to return at a later date.
I'm not sure about your tongue issues. I do have the same things, but I blame it on the severe dryness.
Hopefully someone with more experience will have a better answer for you!
Again, welcome to the board!
MCTD, sjogren's,dRTA,CVID, sero neg. ra,achalasia,Morvan’s syndrome,familial dysautonomia,POTS, MCI, IC. Occular neuromyotonia migraines,raynauds,B6,Florinef, propanolol,sodium bicarb, plaquenil,requip,B2,topiramate, synthroid,diazepam,trulance,enbrel,cevimeline,
arava,omeprazole, mexiletin

ashler

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Re: Male under 40, symptoms appeared out of the blue, very concerned
« Reply #2 on: October 10, 2014, 06:48:14 AM »
I looked at the blood tests you posted on the other side and they do look out of wack. Did the doctors explain to you why?

which ones? all results are within the normal ranges so far (that's the reason why Doctors don't know what to do). except for the liver functions (GMT) all is "within normal range".

i went to a reumatologist and she says people with SS always have positive antibodies (ANA, etc.) but in other sites I read only a lip biopsy can determinate that.

thanks for reading.
Male, born in 1977. sicca symptoms started in June 2012 (I was 35). White coated tongue. Macroglossia. Salivary glands disorded confirmed. Lip biopsy results match the Grade 2 of the Chisholm & Mason criteria.
Tongue photos http://www.medhelp.org/user_photos/list/2076759

cccourt1942

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Re: Male under 40, symptoms appeared out of the blue, very concerned
« Reply #3 on: October 10, 2014, 07:57:18 AM »
Hi Ashler:  Please remember we are the same as you:  We post questions and await answers from others.  We are not specialists. 

Why the many HIV tests?  Just curious?  The tongue--only going to address the tongue.  I know rheumatologists will not know what to do for your tongue.  VERY specialized dentists (Sjogren's specialized) know what to tell you about burning tongue, burning mouth, and geography tongue.  You need to find an otolaryngologist  (ENT) for the tongue.  Find someone young.  Older ENTs know little about Sjogren's beyond being able to spell it. 

I have read recommendations for  Neutrasal (an Rx) for use on the tongue.  I have never used it.  Personally I use an OTC product called OraSoothe.  It is available on Amazon..or from its home which is in Grand Prairie, TX.  (google)  I had the tongue issue for over 2 years before a P.A. suggested I needed to have blood tests to determine SjS.  She was spot on. But it was a daughter's friend (a dentist, btw) who asked me about my tongue  (knowing of suspected SjS only) and advised me on Orasoothe.  My tongue healed in less than a week.  I recommend this product often, especially to newbies who haven't learned all the products to make which give  comfort.  I maintain my tongue comfort with this product.  After dx I learned to avoid foods which irritate the tongue.  Bottom line:  the tongue is a result of the SjS / dry mouth.  Doctors couldn't believe I had not figured out what I had myself having suffered sialadenitis for over 5 years.  The ENT treated me with Medrol and Cephalexan.  Both worked...but temporarily.  When you google "causes of dry mouth" there are two answers:  diabetes and Sjogren's.  I never even read through the search results as I "knew" I didn't have an AI D or diabetes.  I was right about the diabetes.

I can tell you are more desperate to have a causation than remedy.  The remedies will help you feel more comfortable...and then you can settle into the "cause"  ramifications. 

One last question:  why gammography (sp?).   I have never heard of this from anyone or anywhere.  What type of doctor ordered such a test?  There are alternative tests for SjS. 

We do have male members...in fact there are about 8 to 10 young men on the forum at present.  Emphasis on Young..as I don't think I have seen any man beyond 40ish.

good luck to you.
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

ashler

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Re: Male under 40, symptoms appeared out of the blue, very concerned
« Reply #4 on: October 10, 2014, 08:16:56 AM »
Thank you.

To your questions:

1) Took several HIV tests due the bizarre symptoms I experienced after being with this girl and because xerostomia is on the list of HIV "symptoms" (and since I was totally healthy before being with this woman, it didn't make any sense all these symptoms)

2) Gammagraphy was ordered by an oral and maxillofacial surgeon. It's used to check if salivary glands are functioning properly:

http://www2.san.gva.es/cas/ciud/docs/pdf/nuclear10.pdf


Will take a look to the product you recommended.

Thanks again,
Male, born in 1977. sicca symptoms started in June 2012 (I was 35). White coated tongue. Macroglossia. Salivary glands disorded confirmed. Lip biopsy results match the Grade 2 of the Chisholm & Mason criteria.
Tongue photos http://www.medhelp.org/user_photos/list/2076759

cccourt1942

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Re: Male under 40, symptoms appeared out of the blue, very concerned
« Reply #5 on: October 10, 2014, 08:37:33 AM »
Oh..okay...makes sense now that I know what it's for!  And to the HIV question too!  Makes oodles of sense.  Does the surgeon know you suspect SjS?  And has he mentioned lip biopsy?  My ENT "tested" the efficacy of my parotids by "milking" them!  Wish I had bumped myself up to this specialization!  Thx.  Again..good luck!
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

Tharrell

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Re: Male under 40, symptoms appeared out of the blue, very concerned
« Reply #6 on: October 10, 2014, 09:41:24 AM »
Oops, I meant the gmt, alt and ast. Did the doctor diagnose or say anything about your liver?
MCTD, sjogren's,dRTA,CVID, sero neg. ra,achalasia,Morvan’s syndrome,familial dysautonomia,POTS, MCI, IC. Occular neuromyotonia migraines,raynauds,B6,Florinef, propanolol,sodium bicarb, plaquenil,requip,B2,topiramate, synthroid,diazepam,trulance,enbrel,cevimeline,
arava,omeprazole, mexiletin

ashler

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Re: Male under 40, symptoms appeared out of the blue, very concerned
« Reply #7 on: October 10, 2014, 12:04:12 PM »
Oops, I meant the gmt, alt and ast. Did the doctor diagnose or say anything about your liver?

I had the GMT elevated end of 2010 (symptoms began June 2012) and for what I read people just have an elevated GMT for no reason. I had also an elevated ALT and AST but that was just temporary, it was normal later. I will of course retest for that in the upcoming weeks.
Male, born in 1977. sicca symptoms started in June 2012 (I was 35). White coated tongue. Macroglossia. Salivary glands disorded confirmed. Lip biopsy results match the Grade 2 of the Chisholm & Mason criteria.
Tongue photos http://www.medhelp.org/user_photos/list/2076759

ashler

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Re: Male under 40, symptoms appeared out of the blue, very concerned
« Reply #8 on: October 10, 2014, 12:06:22 PM »
Oh..okay...makes sense now that I know what it's for!  And to the HIV question too!  Makes oodles of sense.  Does the surgeon know you suspect SjS?  And has he mentioned lip biopsy?

he does not know I suspect SJS. he thinks is BMS (burning mouth syndrome) but good thing is that he seemed interested in the case. in any case I will have the gammagraphy next week, so we will see what they find. i will update.
Male, born in 1977. sicca symptoms started in June 2012 (I was 35). White coated tongue. Macroglossia. Salivary glands disorded confirmed. Lip biopsy results match the Grade 2 of the Chisholm & Mason criteria.
Tongue photos http://www.medhelp.org/user_photos/list/2076759

Calli66

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Re: Male under 40, symptoms appeared out of the blue, very concerned
« Reply #9 on: October 10, 2014, 05:04:02 PM »
White tongue:

Oral thrush (candida albicans -yeast) can cause white tongue. Have your doctors mentioned this? I don't know why it would last 2 years, though.

Lichen Planus in the mouth (possible auto-immune process).

Calli

quietdynamics

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Re: Male under 40, symptoms appeared out of the blue, very concerned
« Reply #10 on: October 11, 2014, 03:09:00 AM »

With Sjogrens or Dry Mouth due to other reasons there are oral hygiene and simple diet changes that I find help.

I had gone to the Dr. with a white coating on tongue, thinking it was early thrush.. antibiotics did not seem to help.

The coating was most obvious in the morning and nasal passage is dry.. so open mouth breathing during sleep.. drying mouth even more.

Morning brushing of tongue with toothbrush to clean and massage helps. And I place my hand on cheek and massage glands from the inside with brush as well. Including cleaning lips with brush.. I am standing at the sink anyway and it does not take much effort.

Avoiding sugary foods as well as high starch, sticky foods. Sipping water and swishing to clean mouth after eating.

Salivia is more than than a watery lubricant.
http://en.wikipedia.org/wiki/Saliva

Since we produce less, we can become dehydrated and that may cause ridges in tongue, swelling and thirst.
So it is recommended to 'sip' throughout the day a liter of water. I also consume yogurt for probiotics (digestion)

With the loss of the added protection of components of saliva that the average person makes, at times I have a thirst that requires an electrolyte drink.. such as Gatorade (so I know I am dehydrated and will sometimes feel the dryness in my eyes and have a headache.. it is important to stay hydrated.)

The thick salvia may also be helped with added water intake. Avoid sugars and caffeine.

The 'spit test' I did showed very low and thick, foamy.
And recently the Nuclear Salivary Series show decrease function of parotid gland. The test you are to take states to fast for 4 hrs. prior. Usually they do not even want you to chew sugarless gum prior. So ask.

There can be other reasons for Dry Mouth hopefully the test will help your Drs.
http://en.wikipedia.org/wiki/Xerostomia

Sjogrens:  http://dental.ufl.edu/files/2012/02/Sj%C3%B6grens-Syndrome-Oral-Health-Care-Information.pdf

Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

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ashler

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Re: Male under 40, symptoms appeared out of the blue, very concerned
« Reply #11 on: October 11, 2014, 04:08:05 AM »
I had gone to the Dr. with a white coating on tongue, thinking it was early thrush.. antibiotics did not seem to help.

why antibiotics would help to cure thrush? it's the opposite: antibiotics may cause thrush. thrush is yeast, therefore it can be treated only with antifungals.

The coating was most obvious in the morning and nasal passage is dry.. so open mouth breathing during sleep.. drying mouth even more. Morning brushing of tongue with toothbrush to clean and massage helps. And I place my hand on cheek and massage glands from the inside with brush as well. Including cleaning lips with brush.. I am standing at the sink anyway and it does not take much effort.

Thanks for the tips :)
« Last Edit: October 11, 2014, 04:10:33 AM by ashler »
Male, born in 1977. sicca symptoms started in June 2012 (I was 35). White coated tongue. Macroglossia. Salivary glands disorded confirmed. Lip biopsy results match the Grade 2 of the Chisholm & Mason criteria.
Tongue photos http://www.medhelp.org/user_photos/list/2076759

ashler

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Re: Male under 40, symptoms appeared out of the blue, very concerned
« Reply #12 on: October 11, 2014, 04:11:43 AM »
Oral thrush (candida albicans -yeast) can cause white tongue. Have your doctors mentioned this? I don't know why it would last 2 years, though.

it's the first doctors think and that's why i have been tested several times for yeast (oral swab in tongue). result was negative in most of the times.
Male, born in 1977. sicca symptoms started in June 2012 (I was 35). White coated tongue. Macroglossia. Salivary glands disorded confirmed. Lip biopsy results match the Grade 2 of the Chisholm & Mason criteria.
Tongue photos http://www.medhelp.org/user_photos/list/2076759

Tantalus

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Re: Male under 40, symptoms appeared out of the blue, very concerned
« Reply #13 on: October 11, 2014, 12:58:09 PM »
" Teeth marks in the tongue border area also present?."

Hi Ashler,

I had sores in my mouth including my tongue that corresponded to my teeth, most specifically where my teeth were crooked.  My solution was to straighten the teeth using Invisalign.  It was very expensive and took 2 years to finish but has worked to eliminate the vast, vast majority of sores in my mouth.

The relief was evident very quickly as the invisalign trays cushioned my lips and tongue from the teeth.  Using this type of product requires perfect dental hygiene.  I flossed and brushed every time I ate because you cannot put the trays over anything that might cause decay.  I basically still do due to how much better my teeth became with that level of care.  I still l=leave the trays in 8 to 12 hours a day.

The cost can be prohibitive--your teeth may be straight already--but maybe you can talk to your dentist about some kind of barrier to keep your teeth from hurting your tongue.  I believe they call it a bite splint.

-T

deniselb

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Re: Male under 40, symptoms appeared out of the blue, very concerned
« Reply #14 on: October 11, 2014, 02:12:35 PM »
20 to 40 doctors in two years is a lot of doctors. Have you tried to get one to stick with figuring this out, or do you keep giving up on them, or they on you? There ought to be at least one willing to persist until there's an answer.

Something is clearly going on with your liver that's getting worse over time. What have they had to say about that?