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Avatar universal

Who else to try

Im so mad.  Went to a orthopedic surgeon today to look at my neck.  Ask my symptoms, and then pushed on two spots in front of neck and two spots on back and ask if tender.  He asked about my brain mri and what it showed.  Just tiny scattered areas of white matter signals.  Anyways after he felt of me he said Im not the guy to help you.  He said i need to see a neuro because it sounds like something going on in the brain, blood flow or something.  Ultrasound of Carotid was normal.  Blood tests normal.  MRI neck normal except small herniated disc C4.  Vision test normal.  Ear tests normal except stapes spasms.  Im trying every thing to get my neck fixed, but it seems theres no one that wants to deal with it.  Im sick of going around and one hour my jaw neck and head feel like something is shut off to it feeling wise, pressure feeling, and a minute later I feel good.  I cant even get anyone to look at a very hard lump I feel about size of a marble that runs from back of head down left side of neck by the spine.  Ortho just said lymph nodes are there and its normal, but he never felt it.  Not like that on the other side.  Im so frustrated now, I dont know where else to go to??
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Avatar universal
Hey Josh - Into my second day of it, so only on 2/3 of the full dose and I'm glad to say there are no real side effects at all today - yesterday felt a little weird, slihgtly detatched, but not today. They say it can take a while to work, and doesn't work for all, but I feel alright today - not so much pain - but who knows how I would have been without it. Not enirely sure as to why Neuro gave it to me - it wasn't what he wanted to prescribe, I asked about it and pointed out that I'd read it could help migraine and nerve pain. He said its not one he usually prescribes (I suspect this is because of the expense), but as I was not able to take his usual lineup (all had intollerable side effects or risks for me) He agreed to it. Even going so far as to sign a form saying I had epilepsy that did not respond to the usual treatment so that I could pay $3 instead of the usual $100 a month. I think he was desperate to do something to help me. I staggered in, barely able to walk because my lower spine was killing me and he was very empathetic. I am very lucky to be seeing such a kind guy - hes not like other specialists I've seen at all. He hasn't detached himself from his patients - he really cares and shows it - he treats me I'm like someone whos important and must be helped. I am so greatful. I suspect he sees me as a chalange and that is good.
I saw a neuro when I was 21 because I was falling over for no reason and as yet undiagnosed with CFS, so had all of those problems as well. She took one look at me and told me I was just depressed and wasting her time & referred me to a psycologist - barely gave me a chance to speak. Went to psyc and she was furious at neuro - said I was not depressed, and was obviously in need of medical help. a few weeks later I got an appointment for an EEG in the post, went and had it, and that was the end of that. So you can see why I'm greatful now.
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zzzzz hows the neurontin?  What did he specificly give it to you for, what symptom?  Notice any side effects as of yet?
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Jenny, your almost sounding like with the facial problems, its some kind of Trageminal nerve irritation.  Maybe TMJ related.  Ive read that if theres a problem with a TMJ, it may not produce any pain at all in itself if its a ongoing problem thats never been addressed and you dont even know theres something wrong with it.  But one thing it does affect is the face and nerves.  I have strange face feelings too, that arent painful.  I notice them more when my jaw feels queezy like, tight and weak feeling.  I dont neccesarily clinch my teeth, but all day long ive noticed unconciously by habit i guess i stiffen and put pressure on my right jaw.  Probably pretty similar to cliching though.  I just realized it last couple days.  See if maybe your doing it.  TMJ is notorious about producing pain right below and behind the ear.  I also think, if you havent done it yet should go see a chiropractor and see if any tests, xrays, nerve conductivty and temperature tests, range of motions, posture checks, etc shows neck problems. When I had the torticollis earlier this year, the nerve conductivity tests showed exactly where all the nerve irritations and levels of it were.  If matched right up where i was hurting.  Dont have to go through with the treatment but see if they see anything wrong for peace of mind and maybe the answer to your problem.  Thats what im doing.  Ive heard nothing but wonders with accupuncture and maybe something to think about.
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Avatar universal
Hi there again, I only have pain in my neck and shoulder area, sometimes my ear on that side will hurt also, but the weird facial feelings are painless, and hopefully will stay this way.  It just feels like a pressure near the opening of my ear, and then it will tingle for a few seconds, this isn't a constant thing, although it happens everyday, sometimes more, sometimes less, but since I started PT, it seems to have lessened a good bit.  I think the traction helps the most.  And oh, BTW, mine is provoked by neck movement also (facial).  My therapist seems to think that its coming from my neck.  I may push for a cervical MRI next.  I hope the Neurotin helps you.  Xanax seems to help me a good bit, maybe cause it has a mild muscle relaxant in it.  Going to call it a night, just got home from work, and feeling a bit tired.  Talk again soon!!!!
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Hi Jenny - I'd say deffinately push for a cervical spine MRI - but it may not show anything - I know its hard to believe you can have that much trouble and have it come out clear, but Osteopath told me myofascial problems will not show on a MRI. However, it may be something else, so worth checking. Great that PT is helping - that also makes the prognosis better I'd say. The Neurontin I think made a difference, although I did do that massage and I'm only on a third of the dose - have to start with one dose first day and increase to 2 tomorrow and 3 the next day. I certainly felt better and the pain in my arms went away on its own which it usually doesn't so heres hoping. :-)
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Hey sweetie - hope you're better today. I woke up in heel this morning, but seem to have got it under control by massaging my face & neck with almond oil - also started taking the Neurontin so maybe that helped. I also picked up my Imitrex injections yesterday and saw the reciept - oh my god they are so expensive - I paid $6 prescription fees and the NZ government paid $190 for 4 injections and $96 for a months supply of Neurontin! To put that into perspective, my mother gets $160 per week to live on from the govt for her widows benefit. So here I am trying to get on top of this migraine to save the govt $50!
I am 37 years old - have struggled with health since I slipped in the shower 20 years ago and brained myself on the bath taps - never felt the same again - was a champion rower at the time - obsessed with fitness, cycling, gym. Then 2 years later I got mono real bad - in hospital long time - had pnuemonia as well and nearly died due to extreme fevers. Got diagnosed with Cfs at 23, started to get better @ 28, had my daughter @ 30 and started going slowly down hill again. What I have now is not like the cfs really. More neuro syptoms than I used to have and a whole heap more pain. I'm a little confused - you said you hope it doesn't turn into pain - I thought you did have pain too - are you just talking about your face?
As for migraines, I started getting them as a child although they were not often - usually after a day i9n very bright sunlight - I was always sensitive to light - can't handle sudden bright lights at all - all my senses are hightened actually and this causes irritation to those around me as well as to me. I hate etreme heat heat and cold. I have often wondered if its a thyroid problem, but doc says no although shes only done basic tests. Honestly, the wondering what it is drives me nutty at times - if I didn't have my beloved work and my little girl to think of, I doubt I could have kept going.
Everything you just told me made me think of that round-earth site - did it not put your mind at rest? it certainly answered some questions for me. I do believe you and I have some similar problems Jenny and we may, at some stage have to accept the possibility that we will never know why.
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I'M GLAD THAT YOUR MRI IS STILL DEEMED NORMAL, THATS A GOOD SIGN, BUT I KNOW THE FRUSTRATION OF NOT KNOWING.  MY EAR AND NECK IS BOTHERING ME PRETTY BAD TODAY, THOSE SSTRANGE FEELINGS IN MY FACE SEEM TO ONLY BOTHER ME WHEN MY NECK MUSCLES ARE SORE.
YOU SAID THAT YOU HAVE MIGRAINES.  DO THEY THINK THAT COULD BE SOME OF THE PROBLEMS THAT YOUR HAVING?  MY DOC SEEMS TO THINK THATS WHAT IS GOING ON WITH ME, I DUNNO.  I JUST STARTED GETTING MIGRAINES ABOUT 8 YEARS AGO, MY MOM AND HER DAD HAS HAD THEM SINCE THEY WERE YOUNG, THEY SAY THERE HEREDITARY, SAME WITH MS, WHICH MY MOMS MOTHER HAD, SO THAT LEAVES ME SCARED AND WORRIED ALL THE TIME.  MY GRAM WAS 60 WHEN SHE WAS DIAGNOSED, THATS KINDA OLD, THE NEURO TOLD HER THAT THEY DON'T CALL THIS MS IN PEOPLE HER AGA, THEY CALL IT DISEASE OF DEMYELINATION.  I MIGHT ALSO ADD THAT MAYBE THIS COULD BE HORMONAL IN MY CASE, BEING MY GRAM WENT THROUGH NATURAL MENOPAUSE AT 39.  I AM REALLY SCARED, BUT AFTER 6 YEARS OF HAVING THESE SYMPTOMS DON'T YOU THINK I WOULD HAVE GOTTEN WORSE, AND AT THAT, WOULDN'T IT HAVE SHOWN ON THE MRI?  HOW LONG HAVE YOU HAD YOUR SYMPTOMS?  IF YOU DON'T MIND ME ASKING, WHAT IS YOUR AGE?  I DON'T THINK I WOULD HAVE ALL THESE STRANGE FEELINGS THROUGHOUT MY BODY, IF I COULD JUST FIND OUT WHATS CAUSING THESE FACIAL THINGS, AND MAKE THEM STAY AWAY FOREVER, BUT DOWN DEEP INSIDE, I KNOW THAT I'LL PROBABLY HAVE TO LIVE WITH THIS THE REST OF MY LIFE.  I JUST HOPE THAT IT DOESN'T TURN PAINFUL.  TAKE CARE!!
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Avatar universal
Hi Guys, Well, looks like we're still all in the same boat. MRI has come out OK again. Neuro used the word 'normal'. I find it so hard to believe my brain could look normal!. I do see myself as intelligent - have a high IQ etc, but I also never saw myself as 'normal' at all - had Dyspraxia as a kid - fell over all the time, couldn't catch a ball, said rediculous things before I even knew I was going to speak - kids spent alot of time pointing out to me I was not normal and I guess it stuck - even tho I grew out of most of it.
Anyway, Neuro said he is still at a loss as to what I have - we do know I have migraines, so hes given me Imitrex injections, and at my request, hes also given me Neurontin - yippee - finally get to try it. Very hard to get here - he had to lie on an application form & say I have epilepsy else I would have paid big bucks. I know I should'nt get my hopes up too high, but if this drug can do the things I've read it can do, hopefully without intollerable side effects, well.....
Thank god I have a good Neuro - treats me with kindness and respect. Says he will see me regularly until we get this sorted out and will make referals to ophthalmologist etc (which my doc refused to do) A long way to drive to see him, but definately worth it - this is first time that I feel like someone is taking me very seriously and cares about getting me well - I feel very very lucky. MS is still not ruled out at this stage by the way, but less likely which is good.
I too find I usually feel better under a hot shower, and then sometimes I feel like I'm going to pass out and my muscles feel all weak.
Have either of you had Fibromyalgia suggested to you? I can't remember from your posts - Neuro mentioned it as a possibility yesterday and I suspect he may be right - have avoided it with docs in the past as I was afraid I wouldn't be taken seriously but I have to admit theres alot that fits.
Anyway, must go - sorry to rant on, I've got alot to think over as I'm sure you understand. xx
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Avatar universal
Hi Josh, a hot shower/bath feels great to me, so does hot weather.  When my gram was living, she had MS, hot baths or weather totally wiped her out.  She said it made her feel like a rag doll.  That kinda makes me think, my problem may just be muscular, and also a little anxiety involved.  If the facial thing would go away, I'd feel so much better.  Take care.
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Jenny I agree, I dont think you have MS.  How do you feel after taking a warm shower?  Just curious if you feel better for a little bit
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Hey Jenny. No I don't live in the US - I live in New Zealand - things are qite different here. We have a so-called free health system where you pay to see your family doctor, but when you get referred to a specialist its free. Only problem is its always cash strapped so theres huge waiting lists and they never go ahead and order all the tests as they do in the US - if you have insurance - they order one test, and then you have to wait for that, and then you have to wait to see them to get results and then they might order another and so on. Basicly if you're dying the whole thing speeds up a bit, but suspected MS is not all that important in the greater scheme of things. We do also have a private system, but thats for rich people with medical insurance - probably only 20% of the population have it. Sorry, I'm feeling a little sarcastic tonight. Its a year to the day since all this really started and its frustrating that I have so few answers and still no real effective treatment of symptoms. actually I haven't been all that well for 20 years now, but it got a whole lot worse last year. Tomorrow I see the Neuro for results - I'm not sure what they scanned this time - last time it was brain and spinal chord down to mid thorasic with no contrast. I asked Neuro if contrast would have made a difference and he said no and yet I just read an answer from neuro on neurology forum and he said it does! I wish they would agree on things. No contrast this time either. I suspect they will have had a closer look @ eye muscles this time. We'll see. I have never had a spinal tap - have you? from what I've read, its possible to have primary progressive and have normal MRIs for a while, but it should show up eventually. I would doubt you have MS Jenny - its good to hear you have not visual problems as that is one of the most common early presenting symptoms. I would deffinately look into Lyme - looks like you'll have to be really pushy about it though - sounds very hard to get a diagnosis. Neuro forum doc posted some really useful info yesterday - hope you read it. We don't have Lyme here, so thats out for me. I'm gonna go get some sleep - Neuro is in another city so I have to drive a bit tomorrow - talk soon.
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Yes, my left leg is longer than the other, and everytime my therapist comes in to work on me, he tells me to put your shoulders back, I have always hunched my shoulders, my gram used to say to me, "Jenny Wren, stand up straight, and be proud."  What causes these weird skin sensations that we get from clothing?  I never have these feelings when I'm naked, maybe I should start going around naked, sure hubby wouldn't mind, my neighbors will think I lost it for sure. LOL.  All I know is I'm totally frustrated about this facial thing.  Sometimes I think that the "clothing" thing is nerve receptors in the muscles, and when they get irritated (muscles), or tense, they become overstimulated, I dunno.  Because, believe you me, I am mentally and physically exhausted.  Sorry, had to vent.  Take care, going to call it a night, my tailbone is hurting from sitting to long in this damn chair.
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Wow I read Jens webpage link.  I think others should read it too.  I didnt know especially the sterno muscle even causes so many neurological like problems.  That is one muscle Im going to have the PT look at for me.  Last time never worked on it.  Going to try a indian doctor that deals with homeopaethic because my sisterinlaw knows a guy that had similar problems I had and it fixed him up completely.  Ill share info for everyone when i can
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Yeah I've found homeopathics very helpful in the past too - but haven't yet tried for this problem. Interesting about the sterno muscle - thats the one I was wondering about for me too - osteopath hasn't looked at it as far as I know. - Seems I get problems in many different ones tho. I've been very ill for a year nearly to the day. Had a 3 month illness initially with lots of MS symptoms. Started with a tingling thumb, spread up arm with elestric shock sensations, then legs the same, and muscles involved went weak. Then bad double vision, vertigo,speach probs, went to pick things up & found they were not where I saw them, ataxia, falls, headaches, and other things I can't think of right now. Physician said MS - said he could see nerve damage in eyes, and had babinski sign and hyper reflexes. Then the MRI came out clear! so he sent me to a neuro -didn't get to see him until Feb. Things had calmed down by then, but still have buzzing and pain in toes 24/7, have to where prism glasses for double vision, and have lots of nerve pain. My eyes go cross eyed and upwards when I relax them to go to sleep & this hurts a bit so sleep is not good - this is usually caused by interneuclear ophthalmoplegia - which, if in both eyes, is usually due to MS. Had another MRI last week as neuro thinks the last one must have missed something - this one has been done on a better scanner & I will find out results on thursday. The osteopath I'm seeing works on trigger points and he insists this all could have been caused by my neck - he has made alot of difference in some areas, but not in others - he says give it time and I guess seeing that website made me a bit hopeful that he may be right. Its dammed hard, as you well know, to know what to try - hes the 3rd osteo I've seen and the 1st to make any real difference. Must go get some sleep - talk later.
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Avatar universal
Jenny have you had your posture checked?  Is one leg longer the the other.  Is one hip higher then the other.  Could you be pinching or irritating nerves in the low back or even lelg causing the leg problems.  Some guy I work with had the same thing, except it was on the heel of his foot and especially after getting out of bed.  They said one of his legs were slightly longer then the other, and that threw off his hips and lower back.  Physcial therapy helped with it.  I have a crawly feeling in the back of my knee all the time.  Like you try to scratch it but nothing happens.  Dont know if thats what you get.  It doesnt bother me.  It happens when I sit most of the time and figure its irritated nerves.  Clothing cause you to feel those sensations?  That happens to me too, and I think its the skin not liking whats against it.  I dont wear tight clothes ever.  Makes me itch real bad and little stingy feelings.  Try a full body swedish massage.  See if that relieves everything for a few days.  If so then physical therapy on the low back or legs I think would help
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Avatar universal
What kind of MRI did you have done so far?  I hae only had the brain done, I have had these strange sensations for 6 years, do you think that if I were to have MS they would have shown up by now?  Physical Therapy has seemed to have helped a good bit with the neck/facial problem, but I still have the bug crawling sensation In my legs when I sit.  Are you from the US?  My next step is to get some good testing done for Lyme, being that my husband had pulled 2 ticks off of him in the last 9 years, I never had one on me that I know of, but alot of people don't even know that they got bit.  I worry about MS cause my gram had been diagnosed when she was 60.  I wish she was still here to have her tested for Lyme, from what I have researched the symptoms and tests are pretty much the same.  She did alot of yard work in her lifetime and also camping.  My symptoms are now migraines (hormone provoked), the lovely bug crawling sensation on upper legs, back, and face, the legs and back only do it when I wear clothing against them, weird huh, tight clothing against my back drives me nuts, jaw stiffness/shoulder, I don't have no muscle weakness, no numbness, vision seems to be alright, what do you think?  Let me know.  Oh yeah, heat doesn't bother me, no fatique, more like insomnia from worrying about this strange ****!!!
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Thanks for all the support zzzzz.  You said they prescribed amitriptilyne for you?  Was that one that you decided even after taking one day to give it another try?  That is one that a second neuro prescribed for me.  I never did try it either.  I went to the State Fair today and they had a posture evaluation and massage booth.  It said Im 18 lbs heavier on my right side then my left.  My hips were lined up correctly.  My right shoulder was a little higher then my left.  And my right ear was alot higher then my left when I was standing straight.  She said she felt alot of tension in my neck and recommended me to go to a chiropractor because its possible misalignment.  I asked about squeeking in my neck and she said may be a joint that gets stuck and unstuck.  I have a thin neck, and my brother said it may be a vertebrae Im feeling?  Ive had the hard lump and area down my neck for 6 months.  The last two days, after taking a shower, it feels alot flatter, but just temporary.  Never done that before.  I guess also theres a spinal accesory nerve that supplies the traps and sterno muscles, and also the trigeminal nerve.  If its getting compressed then you can have altered sensations wherever the nerves go.  So yea going back to the PT.  ZZZZ you said youve had similar problems as me, what are you doing about it aside from medication.  What are you trying or thinking about trying.
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Avatar universal
I think its a very good idea to go back to PT, and if you look on that website, you should be able to understand why the problems go when you are in certain positions. Its all about Myofacial pain - muscle spasms and the causes, consequences and treatment. The neuros and orthos don't seem to take much of an interest in this area and so they put the cause down to anxiety - which may well be the cause in some cases, but this website goes into many others. I found it incredibly validating - may not be the cause of all my problems, but deffinately a big part of it. As for the neurontin, yes - its bound to have some side effects - they all do, but its different for everyone and I reckon for me its worth trying and seeing how it affects me before I discount it. I had a pretty bad lumbar injury 2 years ago - badly herniated disc. Life was hell, and at that point I refused to take any meds as I felt very anti drug industry. Doc gave me amiltryp - I refused to try it. I couldn't sleep with the pain and was a mess, so I tried it out of desperation. Made me feel very woozy so stopped it after one day. Back at docs - told her no meds and why - she said 'you have to take it more than 3 days to give body time to adjust'. Tried it and wow! what a difference - I could sleep, walk - still with pain, but I seemed to care less. It changed the quality of my life enormously and it took me 3 months of living hell before I tried it!. Yeah I don't believe in just popping pills without finding a cause, but quality of life is important too and it doesn't sound like you're having much fun Josh. xxxx
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My Dr said there are many side effects to Neurontin.  This may sound crazy, but I think my head may be too heavy for my neck.  After the torticollis and chiropractor, my neck was in awkward positions for a long time.  One shoulder higher then the other.  Its not like that anymore but was 6 months ago.  I tried pulling my shoulders down real hard and that relieves all the pressure in my head and jaw.   I let go and it shoots right back into my head and jaw.  Maybe my neck cant support my head and its scrunching spinal nerves or something.  Maybe thats why when I lay down or bend over everything except the ear spasms go away.  I think my next move will go back to the physical therapist and ask  about neck traction or why doing that to my shoulders makes so much difference.
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Hey Josh - I just found this brilliant website - one that I think you would find very useful indeed - explained a hell of alot in a language even I could understand - don't want to print address here as I suspect I could be breaking rules, but if you go into the neurology forum on this site, and look at a question posted today that Jennywren has posted under, you'll find it there. Let me know what you think.
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Avatar universal
Just re-read your post from yesterday. Wasn't too onto it yesterday - had assumed you were talking about small swellings at the base of your skull & upper neck. The ones that go all the way down the neck are a little different - when I had one recently, osteopath said they indicated there was an infection somewhere in my body and he would not treat me until it went down.
I agree very much with the comment from the poster above about 'meek and mild'. I have learned from my doc's reactions never to mention stuff I have seen on the internet or indicate that I think I know whats wrong with me. With the Neuro, I try to manipulate the conversation a little towards things - with questions mostly. Rather than 'I think it might be this' I try stuff like ' why is it my head gets worse when....?' You need to go well prepared with questions - not answers. Demi is very right about this.
The other thing I wanted to say is this. You have been to three neuros - while its good to get a second opinion, I am finding it beneficial to build a relationship with one, and think maybe thats what you need. I'd say that its quite possible that no Neuro will have answers for you at this point and that only time will tell. I know its hard to have no answers, but maybe you would be far better off if you could it accept this and take the neurontin!. Seriously Josh - just how bad are your symptoms if you can manage without taking it? Are you taking anything at all? Have you tried the Antidepressants? They can really help. Speciallists are not going to take you seriously if you don't follow the treatment - they're just going to get frustrated with you.
I wish I could get my hands on your neurontin - its harder to get here due to funding limitations (different system)- I've waited a year to get to the stage where my neuro will consider prescribing it.
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Avatar universal
This website has good diagrams of lymph node locations.

http://www.nhlcyberfamily.org/nodes.htm

A Neurologist is not a surgeon.

An Orthopaedist is a surgeon
A Neurosurgeon is a surgeon.

There are surgeries a neurosurgeon will do that an Orthopaedist would never do.
There are surgeries an Orthopaedist will do, that a Neurosurgeon would never do.
There are surgeries some Orthopaedists do, and some Orthopaedist don't, ditto for Neurosurgeons.

Have you tried a Neurosurgeon?

And remember, meek and mild during the appointment definitely makes a difference.
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Avatar universal
I don't know Josh - I too did'nt believe in taking Meds to cover up the cause, but I have come to the point where I simply cannot function without them - so basicly I'll take what I can get - won't give up looking for a cause though. I'm not the one to answer any questions about neck cancer etc. The lympth node thing could be identified by an Osteopath - have you seen one?. I do know that they feel different from trigger points in my experience - harder. And the pain when pushed is different- hard to discribe though.
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Avatar universal
Neurontin Ive never took it.  My regular doctor doesnt want me to take it.  I dont know, I dont believe in medicene to cover up a problem.  I just want to get whatever it is fixed.  How can you tell the difference between a lymph node and a trigger point.  Do blood tests indicate if the swollen lymph node could be a signal of a neck cancer or something.  Like blood tests for white blood cell counts.  If its a lymph node it has been there for several months.  Then entire length from my hairline down to where the neck and shoulder meet is on the left side where the lumps are, are much harder then the other side.   Our orthopaedists must be the same as yours, because he said my neck mri was fairly normal and it just seemed since nothing was there he didnt want to deal with me.
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