Eyes, sinus, mouth, lips dry suddenly

[jasonsmith]

Does anyone ever get any testing done like MRI's of the head to check to see if anything is abnormal?

[LaDiva]

Jason,
Just wondering if you are drinking enough fluids, eating the right foods, getting enough rest and doing something for stress. I had the same problem years ago during a very stressful period in life. It all went away when life stabilized, and that took awhile to happen. Now I am older and have dry eyes again, but not the other problems. A huge part of helping my dry eye is eating right, doing compresses etc., and lots of stress management. Good luck to you.

[jasonsmith]

Jason,
Just wondering if you are drinking enough fluids, eating the right foods, getting enough rest and doing something for stress. I had the same problem years ago during a very stressful period in life. It all went away when life stabilized, and that took awhile to happen. Now I am older and have dry eyes again, but not the other problems. A huge part of helping my dry eye is eating right, doing compresses etc., and lots of stress management. Good luck to you.

I've been chronically ill for well over a decade now. It's degenerative as it gets worse every year. It's systemic. But things like fatigue, weakness, bowel/bladder problems, joint problems, etc. One of those 100+ symptom illnesses. Had tested positive for POTS syndrome years ago.

Actually around a year or more before the sudden dryness, not sure, had symptoms of dryness when I layed down to sleep. i.e. When I'd lay down to sleep. Within 5 minutes I'd feel my lips go dry, then mouth go dry, then sinus go dry, then eyes go dry. Just from laying down to sleep. It didn't bother me, but was just noticable that I thought at the time was due to the fan. Then when I'd wake up, my eyes felt dry but went away by the time I got to the bathroom.

Well some time later is when I woke up one morning with eyes burning, and that's when the dryness started as a problem.

I have had dandruff problems for years. But years ago started having skin peeling inside my ears and nose. After the dryness started, now also have skin peeling around outside of nose and upper lip. Showed it to the last Rheumy, but I guess he's never seen that before as chunks of skin peel off.

With the 100+ other symptoms, I think it may just be one of those one-off type illnesses that is rare. Though years ago did test positive for Babesia Microti and Lyme disease. I'm looking at going to a clinic that treats chronic viral/bacterial infections that can cause chronic illness.

[littlemermaid]

Jason, Have you found other people with similar symptoms through the Rare Disease networks? Some people here have managed this eventually with eg lupus-like symptoms and narrowed it down to a specific autoimmune pathway, thus avoiding systemic meds for individual symptoms that did more harm than good.

We had MRI of head and spine for intracranial hypertension secondary to oral meds. There is dysautonomia in some people with IH. MR and CT was to rule out eg tumour causing neuro symptoms fatigue, confusion, uncoordination, peripheral vision wavering, and temporary obscurations like camera-shutters, moving light dots, central grey dots. It's possible to see unusual fluid masses, veins and brain structure as well, esp if the doc has a suspicion of something eg you can see slightly squashed back of eye and slightly wider optic nerve. I can see why they would hesitate to scan without a suspicion of something specific because there is a risk eg eye tumours after frequent OCT [Medscape].

Do you want to do a simple list of your 100+ symptoms here? Somebody might recognise something. Eg

chronic fatigue
dry eyes, mouth, nose
incontinence
constipation
knee and finger joint pain

I'm not currently seeing why any doctor should not work with a patient on differential diagnosis. I'm quite fed up with this doc attitude of not researching conditions and the patient bouncing from doc to doc until we find someone by hard work or by chance who knows what's wrong. Can't they research or confer for us?

And now we've all got access to information, what actually is a specialist? Somebody much smarter than us and Dr Google, hopefully.

[jasonsmith]

Jason, Have you found other people with similar symptoms through the Rare Disease networks?

Never heard of that before. But, it's one of those things where it's like 100+ symptoms, so kinda of hard to look up.

Big problem I've had is getting treated. As the doctors refuse to really do anything or seem to care. There are so many symptoms that there are several areas to explore
with testing, but the doctors refuse to do anything. Kind of like dragging your broke down car around for over a decade trying to find someone willing to pop the hood.

Alot of docs have said nothing is wrong with me. Or they diagnose one of those throw away diagnosises like Fibromyalgia, Chronic Fatigue Syndrome, or Central Sensitivity Syndrome without running any tests. I think those diagnosises are just a way for a doctor to get out of having to do work. It's just an easy way out. This last Rheumy I saw diagnosed the Central Sensitivity Syndrome during the first visit. I think it's a fad. In a few years, they'll be diagnosing some other syndrome that is trendy at the time. The doc even mentioned these syndromes are trendy as they diagnose whatever is popular at the time.

Kind of like when I went to doctors for the chronic diarrhea, instead of running tests that could actually uncover the cause, they just say it's IBS without doing anything. I think they are just lazy. Funny is that every time they do studies on people diagnosed with "IBS", they find right off the bat over 50% have something found through testing to be causing their bowel problems like infection, etc. So "IBS" is one of the most mis-diagnosed conditions out there. Which is no surprise as any Gastro doc has pamplets about IBS hanging on the wall ready to hand out to anyone who has a chronic bowel problem.

[littlemermaid]

Jason, We typed at the same time. I absolutely agree with you and this has been totally our experience too with systemic problems. Plus docs dishing out contraindicated meds with no coordination or communication.

We have found a most excellent and honest Paediatric Rheumatologist who would do anything he could to help us, but as he says, these systemic autoimmune disorders are diagnosed mostly on symptoms and there aren't that many reliable tests. He tested for antibodies and even looked at the genes for suspicions. We're also following the research on inflammatory pathways, to the best of our ability which isn't much.

It's been about managing symptoms that aren't easily fixable without making things worse, like the dry eye inflammation. That's life, I guess. Certainly, lifestyle and diet and positive thinking makes a huge difference to my daughter's flareups once we had a plan for managing the eyes, as LaDiva is saying. Also supportive docs for checks and maintenance and discussion.

It is possible to get on with a good and happy life once the symptoms are managed.

What I'm thinking is that there is some mileage in looking at the Rare Disease forums http://www.hon.ch/HONselect/RareDiseases/

[littlemermaid]

Jason, Do you have any vision symptoms associated with the head pains? Have you noticed triggers for flareups of any of the 100+ symptoms, even a few days later?

[jasonsmith]

Jason, We typed at the same time. I absolutely agree with you and this has been totally our experience too with systemic problems. Plus docs dishing out contraindicated meds with no coordination or communication.

We have found a most excellent and honest Paediatric Rheumatologist who would do anything he could to help us, but as he says, these systemic autoimmune disorders are diagnosed mostly on symptoms and there aren't that many reliable tests. He tested for antibodies and even looked at the genes for suspicions. We're also following the research on inflammatory pathways, to the best of our ability which isn't much.

It's been about managing symptoms that aren't easily fixable without making things worse, like the dry eye inflammation. That's life, I guess. Certainly, lifestyle and diet and positive thinking makes a huge difference to my daughter's flareups. Also supportive docs for checks and maintenance and discussion.

It is possible to get on with a good and happy life once the symptoms are managed.

What I'm thinking is that there is some mileage in looking at the Rare Disease forums http://www.hon.ch/HONselect/RareDiseases/

I'll look into it.

I don't know if there is an autoimmune condition going on. I know the tests for that have been negative, but do understand you can still have it.

I did test positive for POTS years ago, but didn't show anything on their autonomic testing. But do know the POTS is autonomic disfunction. So maybe that could have something to do with the dryness since those things are also autonomic. I do know the reflexes still work if I rub Q-Tips inside my nose, it will cause my eyes to water, sinuses to run, and mouth to water.

I'm going to look at getting back to treating the babesia and lyme. Had positive IGG for the Babesia Microti years ago. Then months later, had a blood stain/smear done. And they found Babesia inside the red blood cells, and things attached to the red blood cells they thought were microplasma or bartonella. They also included a picture of the smear.

I had to fly out for treatment, but was too expensive and the local infectious disease doc refused to do anything, so I gave up on it.

Kind of funny how doctors will say there is nothing wrong. Then I show them the positive POTS test, with abnormal blood flow going to the brain test, the babesia and lyme, testosterone is always low, etc. And they'll say those tests are wrong. So you can't win. They refuse to do any testing so they can say there is nothing wrong, then when I show them abnormal tests, they say those tests are wrong. I don't think they care if you live or die, or have to live in disability due to non-treatment.

I started going back to doctors after the 0 Shirmers as you can't fake that, but they still wouldn't do anything different than what they've done for over a decade, which is nothing.

Do you know if the Mayo Clinic is any good on diagnosing rare illnesses? Thought about going there if I get insurance again, but not sure if it would be a waste of time.

I do remember years ago some celebrity woke up with a black spot in his vision. And he went to his doctor and they stuck him in a hospital for 3 days straight running tests trying to figure it out, but concluded it might be Multiple Sclerosis. If that happened to me, the doctors would probably say I was faking it, or say I have to prove it to them before they'd run any testing. Then if they did any testing, it would probably be one test then give up.

I think a big part of the problem is insurance. As doctors get paid whether they do anything or not. At least when you take your car into a mechanic, they don't get paid unless they actually do something. They wouldn't be in business long if they charged you just to tell you they weren't going to try and fix your car.

[jasonsmith]

Jason, Do you have any vision symptoms associated with the head pains? Have you noticed triggers for flareups of any of the 100+ symptoms, even a few days later?

I don't notice any vision changes.

I do have alot of head pressure, but at times it's alot more severe. Like wearing a really tight helmet. At times makes you feel like you've gotten off a boat or something. I think it probably causes some or alot of my cognitive impairment and brain fog.

But the brain pain is like brief stabs in the brain. There have been times where it feels like someone dragging a pencil on the back of my eyes. And sometimes feels like pressure is trying to push my eyeballs out. Sometime the pain feels like brief little cramps. It's something way different than a headache, but does sometimes turn into a headache.

I've mentioned to the doctors there are tests for intercranial pressure, but they don't do anything. But I had a device hooked to my head years ago during the POTS test that showed reduced bloodflow at the temple, which is what supplies blood to the brain, but they still won't do anything.

[littlemermaid]

What regular eye checks are you having? Do you have eye pressure, vision and retina exam? Regular ophthalmology might put your mind at rest a bit. Plus they could manage the dry eyes. They should be able to diagnose eg IH from looking at optic nerve eg at retina or from function. They could do back of eye CT or ultrasound for swelling or mass, or even electrophysiology.

The eye is a window into the head including veins and nervous system, and can show the results of inflammation from systemic disorders, so some very cool Ophthalmologists can diagnose unusual conditions that way. But it would probably have to be a research team in a regional teaching hospital used to unusual disorders, I think.

Absence of optic nerve swelling at the retina doesn't necessarily rule out IH (http://www.ihrfoundation.org/) but a Neuro should take into account all symptoms - have you been able to get a Neurology exam?

Conclusive cerebrospinal fluid pressure tests for IH are invasive - monitoring probe in the head or a lumbar puncture. With LP they could test the CSF for infection. As I was saying, we had MRI before LP specifically to check for mass first. Lucky, because LP might have shifted a slight cerebellum herniation she has from CSF pressure or congenital. I'm far preferring medicating according to symptoms subject to not getting degeneraton of optic nerve function even though we have confirmed IH on eye symptoms. So 'they won't do anything' doesn't sound so bad to me because even with standard LP there is infection risk but they should refer for Neurology checks.

It's ER standard for bad head pain to check optic nerve head with an ophthalmoscope and other nerve functions Neuro-style. Negligent not to.

We've found that with this unidentified systemic autoimmune-type metabolic dysfunction, we're looking at maintaining various symptoms for a good life until the science catches up.

Does anyone have any idea what could cause widespread dryness? I've tested negative for autoimmune several times.

I guess diagnosis depends what they specifically test for. I think I would request all the test results you've had in the past and keep a file ongoing for an overview because they will only have tested for things they thought of at the time. The Rare Disease link shows 100s of autoimmune conditions, all with various specific tests that sometimes are not even conclusive. 'I don't know' I can work with if they are supportive on monitoring and research.

Do you still think it might be Lyme? Anything in the family history?

Jason, Can I suggest a Symptoms Diary on everything, if you're not already. We rate head pain 1 to 10 - we made up our own code and graphic to describe it eg we draw a simple oval head with nose from the most useful angle and draw it on. This might also help you identify when brain fog happens, see if it's related to anything. This headache and symptoms history is a big help in doc consultation, especially Neurology.

[jasonsmith]

Past two years I've seen like 5 eye doctors. Took 5 of them just to figure out I also had Blepharitis along with the low tear volume. Previous 4 eye docs didn't mention the Blepharitis as I guess they didn't look for it. I had to ask for dry eye treatments like Restasis and oral doxy as they don't offer that up. Good thing I research.

I've seen at least 150+ doctors in total. I've seen at least 5 neurologists in the past decade. When I mean lack of treatment, it's literally like a lack of treatment. As the doctors abandon me after the first or second appointment. So I'm always looking for a new doctor. Early on I told a doctor of my symptoms of low testosterone and asked to be tested. I also told him of my problems, i.e. joint pain, muscle weakness, fatigue, etc. He said I was too young to have any of those problems, so he wouldn't do anything other than a basic bloodtest. He didn't test my testosterone. A month later I went back to the office and saw the nurse practioner instead. He thought I may have Marphans, and he was willing to test my testosterone. Guess what, I was right. My testosterone came back really low and the NP was going to treat me. But the MD doctor refused to allow me to get treated there. So I had to go somewhere else.

1st neurologist actually ran some tests other than just doing a basic bloodtest. i.e. EEG, nurve conductive test. But those few tests were normal, so the neuro said nothing was wrong with me. He even had me do a drug test. I didn't want to pay for it, but knew he'd accuse me of being on drugs if I refused. Anyways he abandoned me as he wouldn't do anything else saying nothing was wrong with me because some tests he ran were normal. I later showed him the positive POTS test, babsia/lyme, reduced temporal bloodflow,etc. And he said all of those tests were wrong. You can't win.

2nd neurologist. As soon as he came in, I started telling him I had problems waking up alot at night with parts of body numb. He said "who cares", and then spent the rest of the time asking me about my hobbys and child hood and wanted me to see his physcologist buddy. He ran NO tests. Never saw him again as it was a waste.

3rd neurologist I saw ran NO tests. She gave me an off-label medication to try that she says she gives out to patients with fatigue. (Notice that is just one out of hundreds of my symptoms). I took the medication and noticed no difference, and went back and saw her for the 2nd time. She said that is all she can do. So she abandoned me.

4th neurologist was a neuromuscular doctor. He ran some basic bloodwork like what they'd run if you went in for a physical. The basic bloodwork came back normal, so he just told me to go out and start walking. I asked him what is that supposed to do with regards to treating my illness? He just said to walk to stay active. I told him I can barely walk as it is due to this illness that I'd like to figure out. He just said do it a little at a time. Might as well tell someone with Cancer to go walk or something.

5th neurologist I saw a few months ago, I started telling her of my symptoms. She stated she didn't want to talk about any of my symptoms other than just the muscle weakness. I told her you really need to look at ALL of the symptoms as it's like pieces to a puzzle. The more you have, the better the overall picture is. She had me press on her, and she pressed on me. And she told me that checked out fine and that she was not going to do anything else and that I didn't need to see her again. She ran NO tests. I told her just talking about the one symptom of muscle weakness, is that there are tests right now that could figure it out, i.e. muscle biopsy, stick stuff in the muscle to see why you're weak. And she just said she didn't think the tests would show anything, so she wouldn't order them. It's like talking to a psychic or something. It's easy for her to say that when she doesn't have my illness. I bet you a million bucks if she had what I had, she'd run all sorts of tests on herself.

6th neurologist. I told my Rhuemy a few weeks ago of that crappy 5th neurologist he referred me to and asked him to refer me to a different neurologist. My rheumy had a different neurologist look at my file. And that neurologist reported back to my Rheumy that he would only offer disappointment as he said he didn't think I had a neurology problem. So this 6th neuro hadn't even seen me and he already abandoned me claiming I didn't have a neuro problem using his pyschic powers I guess. So I told my rhuemy to refer me to someone else then since that 6th neuro went ahead and said he was going to do nothing. I did have my rheumy ask that neuro what was wrong with me since he claimed it wasn't a neurology problem, the neuro reported back that he didn't know. It's easy for a doctor to say someone doesn't have anything wrong. But alot harder for a doctor to say what someone has, as that requires testing and work.

So generally I think these doctors don't really care, and are not interested in doing anything. So litterally even though I've seen over 100+ doctors. I've really been going without treatment as they either refuse to do anything, say I'm fine, or run just one blood test and then stop any further testing.

Another example is that last Rheumy doctor I saw tried to tell me I was exaggerating my symptoms because my inflammatory test was normal. WTF? He tried to blame all of my symptoms on Central Sensitivity Syndrome. It's just an easy way out for the doctor to just give you an easy off the shelf label instead of run tests. He even had a print out thing on CSS that he went and got. I told him that CSS is just like the Chronic Fatigue Syndrome, etc. That it doesn't really tell you anything, and the list of symptoms are vast and they are vague. So anyone on the planet could be diagnosed with it. I also mentioned that I had a ton of symptoms that aren't even on that print out list he gave me. So I asked him if he's saying those symptoms don't exist, or is he just going to blame it all on CSS regardless? Then he was dumbfounded. I then told him of the 4-5 examples I had of doctors saying I didn't have something, then a short time later another doc finding I in fact had that because it showed up in tests. That rheumy did tell me that with all of my symptoms, that it could end up resulting in endless testing. And that they can't/won't do that. I told him thus far it's like going without any testing at all, so what is so hard about at least trying? Then he mentioned 100 years ago they didn't have any testing. Like that's supposed to mean I shouldn't bother with testing because they didn't have any testing 100 years ago. He doesn't have a good answer to my question about lack of treatment, so he just says, well they didn't have any testing in the past.

[littlemermaid]

Jasonsmith, Are your autonomic symptoms consistent with the Babesia microti infection, do you think?

Neurologists seem to be going interestingly 'alternative' these days - did yours suggest any useful non-medical therapies?

[jasonsmith]

Jasonsmith, Are your autonomic symptoms consistent with the Babesia microti infection, do you think?

Neurologists seem to be going interestingly 'alternative' these days - did yours suggest any useful non-medical therapies?

I know Babesia can cause alot of symptoms. But the Babesia is controversial as with Lyme. As alot of docs say it doesn't exist, or say it goes away on its own, or something. But every doc I showed the lyme/babesi stuff to, they ignore it like they didn't see it. One neuro said I didn't have it like those tests were fake. It's literally that bad when talking to a doctor. Well, except one doctor who was lyme literate. But he was a plane ride and car rental away, so I only saw him 3 times due to expense. Went to a local infectious disease doc for my 4th visit instead, and they said they wouldn't do anything and suggested I don't treat it as if it wasn't real or something.

I know it looks bad. But every neurologist I have seen say something like there is nothing wrong with me. Something to that effect. So they don't offer anything useful. One neuro just told me to go walk, which meant nothing. If I was rich like a celeb, I could go to a specialty clinic and get tests ran. I'm just too poor to go to those type of clinics as I can't do anything productive due to illness.

I'm going to try and get into Stanford clinic in CA. They treat chronic infections. But I'm also going to see if I could see a neuro doc there as well since my local docs refuse to take my condition seriously. Though not sure if their neuro docs are any good, but at least part of their clinic is open to things. So it's worth a chance.

[littlemermaid]

Can anyone recommend patient forums for undiagnosed systemic disorders? Maybe a US clinic suggestion might prevent wasting more time/money. It's so difficult.

The anxiety is massive and is probably hugely worsening neuro symptoms, in our experience. Have you got any support or healing or exercise or outdoor therapies in place at all? Can you still enjoy fishing or biking or sailing or whatever?

Do you have any sunlight sensitivity in the eyes or skin?

Have you got doc-support from your General Practitioner? I like a doc who says 'I don't know' and 'I'll think about it'. That I can work with.

Some people here have found others with the same symptoms eventually through the rare disease forums but it has been about refining a diagnosis ongoing but working on relieving the symptoms as a priority.

I've had a bunch of other health problems for over a decade like progressive weakness.

When and how did all this start for you?

[jasonsmith]

It started 15+ years ago. Was disabling within the first year. My hair even changed. Got all dried out looking. People worry about what they are going to do on the weekend. I worry about how I'm going to roll over in bed. It's just that severe both physically and mentally. I'm just one step above a coma. I don't really brush my teeth for example because the fatigue and weakness are so great that I have to force myself to do everything. Even reading is hard and watching TV because I'm physically and mentally too tired to concentrate. It gets worse every year and was disabling 15 years ago. I'm pretty much bed ridden. I really probably need to be in a nursing home, that's the level of severity. Imagine the sickest you've every been, that's what I deal with all the time and next year will be worse.

What I'm interested in is running logical testing to figure out what is wrong. I've already over the years looked up my symptoms and came up with tons of logical testing that could be done based on my symptoms. Problem is the doctors won't do them. Several of them have made comments that I "look" fine. I even told a doctor about my dry eyes, and he said that my eyes "looked fine" to him from across the room. I'm surprised my body still works at all. My last rheumy made a comment like it wasn't that bad just because it didn't kill me like 15 years ago.

I think it could be figured out, problem is the doctors just don't care to try and figure it out. I'm hoping its all from this possible infections thing, as treatments are available for that and I'm going to try to get back to one of those types of doctors who treat those infections long term.