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Thread: Eyes, sinus, mouth, lips dry suddenly

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    Eyes, sinus, mouth, lips dry suddenly

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

    But did notice a few years ago when I would lay down to sleep, that I could notice my eyes, sinus, mouth, and lips feel kinda dry. It didn't bother me, but just noticable within 5 minutes of laying down. Then when I would wake up, my eyes were kind of dry, but was gone right after I got up. Also noticed for a year or so before the dryness started, that my sinus mucus production went away. i.e. I used to blow my nose all day long, but then the mucus went away to where I didn't have to blow my nose anymore, and no more mucus build up when sleeping.

    One day I woke up with eyes on fire. Shirmers tests was 0. And ever since had problems with dry eyes bothering me. A couple of months later on the same day, my siuses and mouth dryed up and started bothering me. That was rough for a couple of months, then my sinus was better here and there, and my saliva came back, but it would get dry here and there. Then later also noticed my lips feeling dry alot.

    The Doctors won't do anything. But was wondering if anyone had any ideas what could be causing all the dryness? Especially the dryness that started bothering me started suddenly. Makes me think neurological.

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    I test negative for Sjogren's (many do) but had a positive lip biopsy. If your problems continue undiagnosed I would insist on the biopsy. It left me with a permanently numb spot on my lip but was worth it to get the diagnosis. The spot doesn't bother me I only notice it if I touch my lip....F/G

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    Quote Originally Posted by farmgirl View Post
    I test negative for Sjogren's (many do) but had a positive lip biopsy. If your problems continue undiagnosed I would insist on the biopsy. It left me with a permanently numb spot on my lip but was worth it to get the diagnosis. The spot doesn't bother me I only notice it if I touch my lip....F/G
    Nah, that's too invasive. Plus if they don't find anything, it doesn't mean anything as you can still have it. If it did show something, it wouldn't change anything treatment wise as they'd just treat symptoms.

    I've had a bunch of other health problems for over a decade like progressive weakness. So probably something with the nerves. Did have an H1N1 vaccine a few years ago, so not sure if that could have triggered something.

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    I agree, it was invasive but to me it was worth it. Although not 100% accurate it is much more conclusive than the blood tests which are something like 40% false negatives. That is huge.

    The big reason I wanted a yeah or nay is that there is more to Sjogren's than dry eye and mouth and it can explain other symptoms that I may develop in the future. Just one example that I can think of is that I woke up from an IV sedation procedure and was in an absolute panic state as I felt like I couldn't fill my lungs, I felt like I was drowning even though my O2 saturation level was 100% at the time as I had O2 being administered. I know now that I need to have humidified air if I ever have anesthesia again as my lungs and throat had become dry from the O2 they were administering and I had trouble restarting them.

    Throat: A breathing tube between the vocal cords or breathing mask in the back of the throat will be used during general anesthesia in most cases. The lining of the throat is exceedingly sensitive and having a dry throat will make the usual sore throat after anesthesia even worse. In addition, the throat can swell a bit if it is very irritated which makes it harder to breathe after the tube is removed. You can ask the anesthesiologist to make sure the tube or mask is very well lubricated. Having the oxygen humidified in the recovery room will also help, so you may want to arrange for that ahead of time, as well.

    Here is just a quip that I found on the internet regarding anesthesia considerations and Sjogren's. The whole article can be found at http://tahoedoc.hubpages.com/hub/Sjo...and-Anesthesia

    This is only one small thing that affected me so my point is: There are many more considerations to be made if you suffer from this condition and if you suspect that you have Sjogren's it really is in your best interests to have a conclusive diagnosis...cheers...F/G

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    It acts more like something with the nerves. As there have been times when multiple areas start bothering me at the same time. Like my mouth dry up and my sinuses burn when I breath. But the presentation is a lot more involved than typically is with Sjogrens as well.

    I'd much rather explore all other options than just rely only on Sjogrens.

    I guess no one has any other possible causes for the multy system dryness other than Sjogrens? i.e. nerve problems, vascular problems, hormones?

    When the dry eyes first started, I developed a strange floater in one of my eyes. Never had one of those before and it's still there. I think the odds are more than a coincidence that the two happened at the same time.

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    Unfortunately we are very complex critters and it is can definitely be a challenge to connect the dots. I wish you luck...F/G

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    Quote Originally Posted by farmgirl View Post
    Unfortunately we are very complex critters and it is can definitely be a challenge to connect the dots. I wish you luck...F/G
    Yeah, problem is doctors act more like roadblocks instead of guides to solving the problem.

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    Yeah, roadblocks in tiny self-proclaimed territories with separate languages and incompatible IT systems. Learning diplomatic skills ~ has anyone managed to get these people to talk to each other?

    Jason ~ you're with a teaching hospital aren't you? are the endos talking to the ophth? Are your eyes comfortable, or are you still in pain?
    Last edited by littlemermaid; 04-Apr-2013 at 03:15.
    Paediatric ocular rosacea ~ primum non nocere

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    I could be wrong but im pretty sure you can get a ultrasound of your salivary glands instead of a lip biopsy to check for abnormalities relating to sjogrens/sicca syndrome.

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    Quote Originally Posted by gormz View Post
    I could be wrong but im pretty sure you can get a ultrasound of your salivary glands instead of a lip biopsy to check for abnormalities relating to sjogrens/sicca syndrome.
    I'll have to check into that, but I doubt my latest rheumy would order the test as I don't think he even mentioned a lip biopsy.

    Just getting the dry eyes looked at is hard beause I'd like to have a full dry-eye eye exam. But instead the eye doctors just want to do a run of the mill eye checkup. I know for example they can use these lights to see if your oil glands are clogged or atrophied.

    The thing too about the lip biopsy is the guy doing it could end up biopsying the wrong thing. I've heard of people having to go have it done for a 2nd time because the person must not have known what they were doing and didn't biopsy the gland. Other thing is the guy who reads it might read it wrong and say there is no inflammation when there really is. So always a good idea to have it read by a 2nd person.

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    It's not that they biopsy the wrong thing, it's just that sometimes the sample doesn't contain a salivary gland. That happened to me since I didn't want a lip biopsy they took a cheek biopsy but didn't get a gland so I had to have a second, this time in the lip where I think there are more glands. Anyhow they found one and it came back positive. Interesting gormz I never heard of an ultrasound, I'm going to have to google that..F/G

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    So, nobody knows of any causes of widespread dryness other than Sjogrens? i.e. nerves, vascular, chronic infection, hormones, etc.?

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    Quote Originally Posted by jasonsmith View Post
    So, nobody knows of any causes of widespread dryness other than Sjogrens? i.e. nerves, vascular, chronic infection, hormones, etc.?
    I have Sjogrens. The blood work came back positive so my rheumatologist said I do not have to do lip biopsy. I have the same problems as you. My ear canal used to be a little damp. Now it is all dry up

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    Quote Originally Posted by mani2 View Post
    I have Sjogrens. The blood work came back positive so my rheumatologist said I do not have to do lip biopsy. I have the same problems as you. My ear canal used to be a little damp. Now it is all dry up
    My bloodwork has been negative. I have been chronically ill for over a decade. So have had autoimmune bloodwork done years ago before the dryness started, and that was negative too.

    I do have neurological problems. But one thing that makes me think it could be a nerve problem is that there have been several times when the dryness really bothering me after lying down. Other thing is there are times when my sinuses start burning and my mouth dry up at the same time for example. Which makes me think there is a common cause of the dryness. Especially since my sinus dryness and mouth dryness started bothering me on the same day.

    I do have alot of what feels like head pressure and sometimes feel a stabbing pain in my brain and also pain on the back of my eyes. So could be vascular. I did have a test done years ago that showed reduced bloodflow at my temple.

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    Quote Originally Posted by jasonsmith View Post
    Just getting the dry eyes looked at is hard beause I'd like to have a full dry-eye eye exam. But instead the eye doctors just want to do a run of the mill eye checkup. I know for example they can use these lights to see if your oil glands are clogged or atrophied.
    There are a few people who luck out with an outstanding dry eye doctor from the get-go. For the rest of us, if we want any kind of methodical, thorough diagnosis, there are no shortcuts... We have to educate themselves and take charge of our care ourselves. This includes learning what some of the most common basic dry eye tests are (for tear volume, for oil content in the tears, for osmolarity etc) and asking for them specifically. (And, incidentally, selecting the right type of specialist.) If the dr. does not agree to do what you ask, that's fine but they need to have an alternative test that they prefer which will provide the same kind of information or a really good explanation of why you don't need to be tested.

    Sometimes you can bypass the education process by going straight to one of the highly specialized dry eye specialists, but that can get very expensive very fast.
    Rebecca Petris
    The Dry Eye Zone

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

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    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.

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    Quote Originally Posted by LaDiva View Post
    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.

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    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.
    Last edited by littlemermaid; 11-Apr-2013 at 03:07.
    Paediatric ocular rosacea ~ primum non nocere

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    Quote Originally Posted by littlemermaid View Post
    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.

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    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/
    Last edited by littlemermaid; 11-Apr-2013 at 03:31.
    Paediatric ocular rosacea ~ primum non nocere

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    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?
    Paediatric ocular rosacea ~ primum non nocere

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    Quote Originally Posted by littlemermaid View Post
    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.

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    Quote Originally Posted by littlemermaid View Post
    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.

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    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.
    Last edited by littlemermaid; 11-Apr-2013 at 07:21.
    Paediatric ocular rosacea ~ primum non nocere

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    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.
    Last edited by jasonsmith; 13-Apr-2013 at 05:23.

  27. #27
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    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?
    Paediatric ocular rosacea ~ primum non nocere

  28. #28
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    Quote Originally Posted by littlemermaid View Post
    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.

  29. #29
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    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?
    Last edited by littlemermaid; 13-Apr-2013 at 07:25.
    Paediatric ocular rosacea ~ primum non nocere

  30. #30
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    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.

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