Discussions By Condition: I cannot get a diagnosis.

Suspecting Grotjen's - or it's something else?

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: dudasd
  • November 24, 2008
  • 09:56 PM

Three weeks ago, I had a very painful salivary gland inflammation that was diagnosed as a "common inflammation of submandibular gland". After a strong set of antibiotics and anti-inflammatory medicines, now my other submandibular gland got inflamed. As the pain is milder this time, I recognized it and realized that I have had it many times in last 3 or 4 years (sometimes on the left side, sometimes on the right, never simultaneously). I tried to find out a bit about possible causes, for I wouldn't want to bother the doctors for nothing, but I also don't want to neglect my health. So I just need to know should I ask my doctor to send me to do tests on Grotjen's syndrome (which is not much explored in my country, so it would be a trouble for him too). Or if the symptoms implore something else, what it can be?

Here are the symptoms I have noticed, with some history (I apologize because of the long list):

(Note: I am 39 years old)


- Rheuma, since childhood, which have progressed with years. Mostly affecting one forearm only (including elbow and wrist), right hand sometimes. No visible malformations; kept under control by diclofenac.
- History of averagely hyperactive thyroid gland, diagnosed in adolescence; many symptoms (like eating much and losing weight, or trembling) dissapeared with the birth of my 2nd child 7.5 years ago. No hormonal treatment.
- Tachycardia (cause unknown, from childhood). In last 17 years it got reduced from 115 beats per second to 94 beats per second, averagely. No medical treatment expect in pregnancies (when the rate increased too much).
- Low blood pressure.
- Allergies (mostly caused by chemistry like detergents or preservatives in food).
- Lack of some stomach enzymes, not thoroughly explored (estimated by symptoms only, not by sounding), as well as occasional lack of acid. I can't digest some kinds of food, especially sweets except pure sugar and honey.
- Dry vagina, very often, from my twenties. (Though it can have psychosomatic reasons as well.)
- Urticaria. It appears without a recognizable reason, for 13 years already, mostly on legs, upper side of the hands and rarely on the abdominal area.


- One acute and very painful inflammation of the left wrist.
- Pains in my neck, often, left or right side, in the area of submandibular glands. (I thought it was pains in muscles.)
- Occasional problems with breathing. I can't inhale and I feel like I'm going to "vomit" my own lungs.
- Dry throat, often. Also I am making a little coughing sound whenever I have to talk, and often before I fall asleep.
- Dry mouth, often, combined with occasional and sudden "floods" of saliva. White tongue from time to time. Feeling of sticky palate.
- Occasional tiny sores on my lips.
- Dry and itching eyes, with blurred vision often. (I wear glasses and go to the controls, so it's not a wrongly diagnosed diopter.) Feeling of a "foreign body". Occasional and sudden "floods" of tears as well.
- Dry nose (itching sometimes), very sensitive (slightly painful tingling from time to time, especially in cold rooms). Ocassional fits of sneezing, followed by floods of quite watery secretion. Problems with sinuses from childhood. Calcification of the frontal sinus (I am not sure I am using the right term, I was told that it's a layer of calcificated tissue that reduces the space of the sinus), diagnosed 10 years ago as stage I. (I haven't controlled it since then.)
- My urticaria got worsened. In last two years it was especially bad after coming from the seaside, so much that I couldn't walk, it would start as a common rash and finish with swollen legs, and lasted for days.
- Painful tingling in fingers, especially under the nails. Dometimes my nails get slightly bluish. Rarely, painful tingling in toes. When I take a shower, I noticed that my toenails go utterly blue. (Not dark blue, more sky-blue.)
- Deformation of fingernails – parralel ridged stripes.
- Pains in my right knee after any longer walk, feeling that "bone scratches another bone". (I haven't checked the cause yet.)
- Occational light pains or feeling of pressure in the area of the thyroid gland, problems with swallowing.


- Terrible fatigue.
- Submandibular glands inflammation.
- Pains in armpits.
- Painful and "heavy" hands (I just can't type sometimes).
- I experienced near-to-suffocating several times during the sleep, with the feeling of "closed throat".

So, should I bother my doctor or not? I know it will be a problem for him to arrange me all the tests. Thank you very much for your advice.

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6 Replies:

  • Well, I believe you may be referring to Sjogren's syndrome. Realize, however, that Sjogren's is an autoimmune disorder and antibody titers can be detected using specific laboratory tests. Symptoms alone, such as those being described, would not in of themselves suggest the presence of Sjogren's. The constellation of symptoms you describe, in the absence of those described of your childhood, would not be necessarily suggestive of Sjogren's, but rather a chronic anxiety disorder that is sufficient enough to cause physiological changes within the nervous system, particularly a type of dysautonomia that causes rapid changes between sympathetic and parasympathetic responses to chronic fear or apprehension. The sensations of a "closed throat" are most likely due to obstructive sleep apnea in some variant of the disorder. If you are experiencing it during times other than being awakened from sleep, it is known as globus hystericus and occurs commonly among persons with chronic anxiety or panic disorder. As for consulting your primary care doctor, you should never use the internet to supplant direct evaluation by your doctor. Realize that most persons who participate in forums like this one are not medical doctors and their advice is merely based upon subjective experiences. While the support they offer is invaluable, adhering to any advice relative to direction of your medical care or responses given in the absence of medical training and experience should be considered with a great deal of caution. It is doubtful that your doctor would run tests to either confirm or rule out the entirety of complaints being described and a chem 21 panel and other generalized screening would be sufficient to determine whether something would require further investigation. As it stands, I don't see anything within your posting that would suggest Sjogrens or other disease. Again, arrange to see your doctor. You'll be fine. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • November 24, 2008
    • 11:50 PM
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  • Well, it seems I am at a dead spot again. :( And no, I won't be fine. I hardly gathered courage to begin the investigation of whatever is causing me pains and troubles for years already (I am terribly afraid of doctors), and I just wanted to know from which side to start, because, as I said, it's very hard to get a good medical care in my country, and it's even harder to get permission for any analyses (even as simple as a regular blood test), so if we want any real help we have to go straight to a private specialist. (As I went to the ORL private doctor when I could stand no more.) So, if we, let's say, put aside a chronic anxiety or panic disorder and globus hystericus (I don't feel any anxiety, my tachycardia is regular and permanent and I just don't feel it, and I have troubles with swallowing only when my thyroid gland is swollen - or salivary glands lately; also I had "dry and closed throat" sensation only while sleeping), and if I forget about my rheuma, urticaria and itchy eyes, as well as allergies and breathing troubles (I live with the last two since I was nine months old so I suppose I will live on with them as well ;) ), to what specialist I should address because of the disturbing gland inflammations and painful armpits? THAT'S what's worrying me. So this was not supplanting the evaluation of my ORL doctor, armpits and belonging lymphatic glands are just not his field of work. The question was just... where to start from? Thank you anyway. :)
    dudasd 1 Replies
    • November 25, 2008
    • 01:53 AM
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  • Endocrinologist or Internal Medicine specialist.
    JCottleMD 580 Replies
    • November 26, 2008
    • 01:43 AM
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  • Your throat symptoms are *very* troubling! You need to be seen by an allergist/immunologist ASAP! This can kill you!!! :( Has anyone thought about celiac disease? It's associated with Sjogren's syndrome and other autoimmune problems. Try here: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm
    aquila 1263 Replies
    • November 26, 2008
    • 09:07 PM
    • 0
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  • Also have your endocrinologist or immunologist check your parathyroid and blood calcium levels. www.parathyroid.com
    vkm416 3 Replies
    • November 29, 2008
    • 06:03 AM
    • 0
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  • I'm glad you had the confidence to not go along with the MD who said your problems are likely due to anxiety and that he/she didn't "see anything within your posting that would suggest Sjogrens or other disease." I realize it has been several years since you made that original post. Perhaps you have gotten a diagnosis by now. Both of my daughters and I have been sick for 5+ years and hear the same thing from doctors repeatedly: The (mostly basic) tests they've done are relatively normal and perhaps we should try psychological counseling (Really? Will that end seizures?); perhaps my symptoms are due to my age (until I mention that both my daughters began having symptoms in their teens); etc. I hope you have not given up. We haven't.If it were me, I would go to a rheumatologist, as I see several things within your post that suggest an autoimmune disorder.
    fraukt2 0 Replies
    • December 28, 2013
    • 06:38 PM
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