Who else to try

[joshua217777]

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??

[Jenny Wren]

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!!

[zzzzzzzzzz]

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

[Jenny Wren]

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.

[joshua217777]

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

[zzzzzzzzzz]

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.

[Jenny Wren]

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.