Eyes, sinus, mouth, lips dry suddenly

[littlemermaid]

Hi Jason ~ Happy that you posted up.

Just found this in Medscape http://emedicine.medscape.com/article/1210417-overview 'Dry Eye Syndrome' and it's good but technical. But good.

Anatomy section explains a bit how the network of nerves affects tearing and eye surface. Something for Dr Google, maybe it's trigeminal nerve V1 ophthalmic branch that's not working so well when you lie down.

'The secretion of the lacrimal gland is controlled by a neural reflex arc, with afferent nerves (trigeminal sensory fibers) in the cornea and the conjunctiva passing to the pons (superior salivary nucleus), from which efferent fibers pass in the nervus intermedius to the pterygopalatine ganglion and postganglionic sympathetic and parasympathetic nerves terminating in the lacrimal glands.'

We're not docs blah blah, but pons is in the brain stem, and you're thinking above maybe there are systemic pressures in there to explain these symptoms. Don't know how nerve pressure would give dry throat but I'm seeing the word salivary there. There are other nerve branches that give eye pain, face pain and headache as well, including traceable back to top of spine.

This is Neuro-ophthalmology really - OCT exam and vision tests for optic nerve function if you want to track anything or start to lose parts of vision and need meds. OCT at back of eye is better than head MRI for the vision stuff, I think.

Neuro-ophthalmologists sometimes stick to back of the eye, whereas we want them knowledgeable in front of eye too including face pain, tearing and cornea.

I'd be trying an eye mask or eyedrop gel at night, just in case the eyelids aren't closing and that makes a difference. 'Lagophthalmos' dries out the eye surface painfully. And be making sure air in the room is not drying.

Also some time after the dryness, did notice vision change. Like when looking at bright light, or sky or concrete. I can see hundreds of these micro dots. Actually looks more like micro glowing worms. And they are squirming all over the place at a high rate of speed.

Anyone else see this from dry eye? My d gets similar with intracranial pressure on optic nerves on bending over or coughing but we're in ophthalmology monitoring for IH so it's kinda par for the course.

Is this consistent with what you're thinking with the dry eye and mouth? have you got a doc you like?

[jasonsmith]

Looks like I'm going to a new primary care physician I guess. Not sure if he will do anything. As most docs will sabotoge your health care to get out of having to treat you. i.e. they say you are really fine and there is nothing wrong, so that means there is nothing for them to treat.

I think I'm done with that last rheumy. So I guess no more rheumy docs.

I will be going back to the neuromuscular doc. But I don't think he will do anything as he didn't do anything the last time. I don't think I can go back to a regular neuro there because I had seen one and that doctor refused to do anything. So I won't see that doc again. And I don't think they let you switch doctors in the same specialty.

[littlemermaid]

Jason ~ You have physical symptoms to treat though, don't you.

Our main problem with Neurology has been describing what's happening because on examination, she looks fine. The only way to get the history across and get referred for testing has been a detailed Symptoms Diary like this:

3 May - headache 5/10 all day, 2 paracetamol unresolved. fatigue 2/10 in a.m. 4/10 by 15.30. transient visual obscuration central moving grey dots on bending in PE. eyes very dry photophobic by evening, frequent drops 8/day.

We also type up all the History, all the consultations, in summary right from the start:

Sep 2008 - overtearing, red eye. Dr x 'allergy' Sodium Cromoglicate 2/day 2wk.
Oct - red eye, unable to open, tearing

This has been the only way to get it across. Has this helped you deal with these people? A sympathetic primary care physician who understands you for regular appointments would be nice.

One problem for us has been our expectations. I didn't know what to expect from docs or how they do business. Seeing it from their point of view has helped.

Also I thought one day we would find one who knew what was wrong and fix it, despite all the internet research telling me they're working on it but currently it's about quality of life. Maybe we will.

I thought primary care would coordinate this 'complex condition', or better, that specialists would communicate with each other about treatments. Maybe they will soon.

At the moment we are doing well self-managing and using various docs like a pitstop to keep on the road, now we've accepted we're driving vintage.

But we needed the one good guy to talk to and take the fear away, even though we don't see him much I know we can go there for help in flareup and we've got monitoring. In our case it's the Eyes, but I wonder if for you it would be a Rheumy.

Our best plan was to get into the 'system' at the biggest hospital we could find, with research labs, and stay there long-term. And keep seeing Primary Care for backup, as you say.

The other thing I've noticed is that with complex disorders difficult to treat, management and treatment is 85% voodoo, and I really really appreciate that now. This means finding a doc we get on with, but respecting they are humans trying to do a difficult mechanics job while dealing with the other stuff we bring to the office. In my case, a massive load of rage, disappointment and suspicion. My god, imagine working front desk dealing with you or me.

I take the help wherever I find it, these days, on the basis it works both ways. Makes the world go round.

Still trying to get my head round this. Any advice? what do you think?
Any chance of you taking a short break, stay with an older relative or something like that?
Are you hanging out with the Sjogrens forums too?

[jasonsmith]

There's no point in keeping a diary. Plus, it would end up being a book. I've met with doctors and told them several of my symptoms. Then the doctors say
that I have too many symptoms, so that I'm just making it up, or that it is all in my head. So, I found the more symptoms you tell the doctor, the less they believe you.
I guarantee it if I brought in a symptom diary, they would look at me like I'm a nut case.

I don't think doctors practice medicine. They practice voodoo. i.e. they use psycic powers to conclude your state of health just by looking at you.

I explained to this last rheumy that the problems I have with doctors is they do nothing. And that they tell me to go somewhere else for treatment over and over again. And he tried to justify the doing nothing by saying 100 years ago they didn't have any of these tests. It's like paying someone to mow your yard, then they take your money and say well 100 years ago they didn't have lawn mowers. So I'm not going to be able to mow your yard, but thanks for your money.

But that Rheumy I had been seeing had referred me to a neurologist in that hospital as I had asked him to. I guess he didn't refer but just talked to the head neuro doc who looked in my file. And so that neuro said by looking in my file they had there, that he didn't think I had a neurological problem. So the neuro declined to see me. I told the rheumy that they have done 0 neuro tests there. So how could he look in a file and conclude anything about a neuro problem, let alone diagnose? He didn't have an answer. So I gave him an example of progressive muscle weakness, and had him ask the neuro what could be causing that if it isn't a neurlogical problem. The neuro replyed back that he didn't know and didn't know where for me to go. It's like a doc looking in your file saying you don't have a diabetes problem when they never checked your glucose.

I guess a hospital patient assistance/counselor person called me as to tell me they declined to let me go there for primary care, as I had also asked for that. As I'm on a patient assistance program there. So they referred me to a local low fee primary care physician. But on the neuro doc, I asked them to let me go to a different neuro doc there. But they declined saying the one neuro that looking in my file said I don't have a neuro problem. So they told me to go to a different neuro clinic outside of the hospital some where. I told them that's the problem is the doctors keep telling me to go somewhere else and that I can't get anything done. I explained some of my symptoms and stated that it really is a neuro doc I need to see based on my problems as I believe I have a neuro problem. But they said we can agree to disagree. WTF? They are basing that off a neuro doc looking in my file which didn't even have any neuro testing done. They kept interrupting me and cutting me off like they were more interested in getting off the phone to go do something else. Healthy people just don't get what being chronically ill is like.

But I called that local low fee primary care physicion office to make an appointment just for the hell of it, and I told them what is going on. And they declined to see me saying based on me having many symptoms and also said if I might have a neuro problem, then I need to go back to that hospital and see a neuro doc. As they said they only do basic things like diabetes. I told them I'd like to get a check up anyways, but they still declined.

So I called that hospital patient assistance/counselor back to let them know. And they kind of like got on to me saying I must not have worded things correctly. And I told them I don't know what else to tell them, as I told the primary care office that I'd like to get an appointment anyways to get a check up, and they declined as they said they couldn't really do anything. That primary care clinic sounds more like a glorified walk in clinic.

But that hospital patient assistance/counselor said they'd call that office and get me an appointment setup. I think it will be a waste of money if that local primary care doc sees me anyways as they won't be doing anything other than listening to what I have to say. Other than maybe a basic blood test. But if that doc does refer me to a neuro, then I don't think that hospital will let me go there even with a 2nd referral since a neuro doc there has already pre-judged my case just by looking in my file.

I think that rheumy doc might have hurt my case there, as he puts in his notes that he thinks I have Central Sensitivity Syndrome. Which is a garbage-catch all-get the patient out of the office because I'm lazy diagnosis that means nothing. He told me about that Central Sensitivity Syndrome thing during my first appointment with him and went and gave me a printout about it. Reminds me of the first time I met with a Gastro doc about my chronic diarrhea. He said "IBS" and then went and gave me a print out about it.

[MeibomianGlandman]

Check out my Thread on Dry Eye Possible Cures Theories.

It is my theory, that 3 things can cause Auto Immune Disorders through the Investigation of Environmental Medicine.

1. Genetically Modified Foods, I believe these are now becoming a Health Issue for some. Some may have allergies and thus the auto immune disorder is born.

2. Allergies, Allergies are caused by pollution. Filth or harsh chemicals can alter the body's DNA in very harmful ways.

3. Poor Water quality or Water Pollution, Sodium fluoride, I believe is a major cause of Auto Immune Disorders.

4. Over Intake of Pharmaceutical medication, I believe medicines that we are using can have a negative effect on the intestine. I know the number one side effect with all medication is Digestive Problems. When you remove these things and heal the intestine, you cure the auto immune disease. I believe auto immune disorders are caused by a Condition known as Leaky Gut Syndrome, Do your research, Many doctors now agree that 90 percent of the Immune system is in the Intestines. I suggest look up Dr. Oz who was the first one to report on this new medical finding.