Thank you everyone for your ideas and support :) I have a lot to think about now, a lot of info to go and read, and a LOT of questions for my doctors - and hopefully with some prodding from me, the docs will find some sort of reason for this.

It's just frustrating. I'm tired of new symptoms and changes that don't make sense and doctors who have few (if any) ideas or suggestions.... and I'm really tired of having doctors tell me my medical history is "interesting and confusing". I don't want to be interesting and confusing anymore.

Thank you all,
Liz

Liz... first of all ((( Huge Hugs ))).

I can definitely relate to how you feel about docs viewing you as "interesting and confusing."

I don't know if you know, yet I learned this the past year or so. There are classifications docs retain in patients' files that denote our "ranging." By that, they mean, a scale by which patients are placed within.

I'm on the "moderately complex" or "complicated" level. The one "above" ranks as "severe." (That's the life and death patients.).

I totally "get" how you feel.

Yet, too... I also don't like that if your facial (non)feeling/symptoms remain without dx, that you aren't possibly getting all that might be available that could possibly help you.

I do like where someone mentioned the idea of your docs doing a conference approach or "round table."

These days, with so many specializations within med., it's also so important that each references the others in testing results, etc.

Mine, to cut through it all, cross-reference one another - on films, lab tests, insurance things that arise and so on.

If you have a doc whom presents as more assertive or open than the others, I'd ask if that doc could be the "team coordinator" and work with the other docs. Someone has to take the lead :).

Hello....

I just joined today and I saw your post and it hit a nerve in me, for I too have been having this type of problem for the last 8 months and the doctors (GP - Rheumy - Neuro - ENT) have all had me tested: X-rays, blood work, Cat Scans and a MRI.... still with no clue or cause for my issues (and) personally I am at my wits end and I am about to give up hope of any of them ever finding the reason/problem to my year long nightmare of Sleepless Nights & PAIN.


My symptoms are:

1 - Face & Head numbness w/ tingling
2 - Infected Right Eye (off & on)
3 - Daily (or weekly) Migraines
4 - Pain in head - increases when I lay down, w/ sleep disturbance
5 - Swollen Neck w/ Pain (and ears) - (some diff swallowing)
6 - Burning in Right eye & Throat (off & on)
7 - Sinus Pain & Pressure
8 - Couching w/ yellow to white phlegm
9 - Chronic Fatigue
10 - Heartburn w/ GERD side effects


... I personally suffer from: RA, Fibro, Bursitis, Meniere's disease, Anxiety, PMDD and Depression.


Maybe one day they will find the cause for both of us, and then a treatment.... Fingers Crossed x x



LoVe,
Rhapsody - :)

Rhapsody,

Hello and welcome to NeuroTalk :)

Yes, it seems as if you and I have a lot in common. I can relate to many of your symptoms and your diagnoses.

I try to stay positive when it comes to finding an answer for my symptoms - but it is soooo hard to stay positive and optomistic when the doctors literally scratch their heads in confusion. I have been on this roller coaster of frustration and confusion for over 5 years. I'm sure you can relate to that frustration!

My doctors have been great in terms of symptom management.... but symptom management brings temporary relief and allows me to live a more normal life - but I wonder how much better things could/would be if we could treat the actual cause instead of just the symptoms. Of course, they have to find the cause to be able to treat it!

I am having yet another round of blood work done soon. I have the order from the doc, I just have to drag myself to the lab to get it done... So maybe the new bloodwork will lead to something, but I'm not holding my breath.

It stinks that anyone else has to feel this way, but it's good to meet you and good to be able to talk to someone who knows what it's like to live on the roller coaster.

take care,
Liz

Hoping it sorts out
 

Hi Wittesea,
Years ago I had so much trouble with my head feeling numb, and I had a lot of trouble with my vision. It was before I had B12 replacement so I don't have any notes from the exact time.

I remember that it was very scary, and the doctor couldn't find a medical reason for it.

I know you know these forums very well, so I'm sure you've read about B12 before.

I noticed that Mari mentioned it, too.

Have you tried taking the 5mg Methylcobalamin, say a few times a day?

I used to have the most awful peripheral neuropathy in my right thigh. It went away totally by accident when I was having B12, a lot of it, for tetanus nerve symptoms.

I was having a shot a day, which is about equal to 6 of the 5mg Methylcobalamin lozenges a day. It took about two months for the peripheral neuropathy to significantly resolve on that dose... a shot a day.

But now I sleep on a mattress, albeit a foam mattress, and I don't have to keep getting air mattresses any more.

When I touch my right thigh it feels like my left thigh... not so wooden and numb the way it used to.

((((((((((Wittesea)))))))))))))))))

I hope it sorts out for you. I think head things are very scary.

I had my face do that, but it's weird. Like, it feels numb and like I can't move it..but I can (feel silly even typing that). My Neurologist said it WAS in relation to my Trigeminal Neuralgia (TN). My Epileptologist told me it was in relation to my low blood pressure.

Me? I think it goes with everything else that randomly goes numb. I know the first time it came, my arm happened to do it to and my friend tried to convince me I was having a stroke (at 28, mind you). I know it's *something* but I know more what it isn't. The only times I feel a great burden is if something is numb and I don't notice it.

I watched my ankle and my leg almost touch, I didn't feel a thing but the sight of it nearly made me throw up.

A way to do a quicky test for TN is to rub the trigger points. If something shocks the heck out of you for 1 second (but feels like 10 and with super force) - that may be it. It's a cheap way to self test and works most of the time. If someone touches above my right eyebrow or rubs my right temple it doesn't take long before I jump up like something shocked me.

There was something else, but I forgot. :(

Occipital neuralgia
 

Hi, I have had the same symptoms you are describing. I finally got some answers that actually make sense after numerous doctor visits, MRIs, CTs, and cervical epidurals (NOT FUN!!). for some reason or another, my occiptal muscles(there are four pairs at the base of your skull, where the neck and skull meet) are soooo tight, like rocks (MY traps are, too). Apparently, these muscles are constricting the occipital nerve, which serves the skin on your head and face (hence the tingling, numbness, etc). I recommend seeing a physical therapist (although you might need a referral from neurosurgeon or general practitioner). The physical therapist I'm seeing says its a lot more common than you might think, and can be caused by having your head down for long periods of time (such as reading a book, laying on couch watching tv, etc...It's often referred to as students' neck or teacher's neck). Oh, and chances are it wont show up on MRI or Ct because it's muscular). I hope this helps. Try looking occipital neuralgia up on the web. May God bless you!! Let us know how ypu're doing!

mine is from a migraine
 

Your symptoms sound a lot like mine. Ask you doctor about the "classic migraine". that is what it is called and it causes facial numbness and that wiggling sensation that you describe. I have had these for years and I know the prelude: tightness at the back of the head/neck area. I lay in the tub and drop my head backwards until my ears and eyes are underwater. that relieves the pressure enough to stop the twitching. Then I go into a darkened room, drink water, take Tylenol or Motrin and go to sleep.
I first had this happen in my early 20's and I thought that I was having a stroke or something because my tongue also went numb. Emergency sent me across the street to the opthamologist. He froze my eye and then declared that I had a migraine. I REFUSED TO BELIEVE HIM until a couple of years later, long before the internet, I saw a book in the pharmacy that accurately described all of my experiences. It is a migraine...just a different one than the "head-ache" model that we think of.
My worst attack had numbness in my hand on the same side as the face...The doctor told me that they would probably go away when I reached menopause...and they have...it only took 30 years but I learned to live with them by being able to predict the circumstances that brought them on.
Good luck

Some of these symtoms may be the result of Myofascial Trigger Points in the muscles of your neck especially the Sternocleidomastoid and Temporalis muscles and Zygomaticotemporal (branch of trigeminal nerve) can be entrapped ny the temporalis muscle.
Read the below link and review. Some of these can be self treated. There are many ways to treat trigger points in the muscles. The most important treatment is a home stretch program.

Head and Neck Pain
http://www.round-earth.com/HeadPainIntro.html

Especially read about the Sternocleidomastoid muscle which can cause atypical TN at:

http://www.round-earth.com/SCM.html

also Nerve and Vessel Entrapments by Muscles: Zygomaticotemporal (branch of trigeminal nerve) can be entrapped ny the temporalis muscle.
http://www.round-earth.com/Entrapment.html

Wittesea OK i DON'T KNOW IF THIS WOULD HELP
 

I know this may be a little late, but with me being a newbee here better late then never. I was wondering if they ever found the reason behide your symptoms.
OK i DON'T KNOW IF THIS WOULD HELP,
But have you ever been tested for Lyme Disease?.
If you haven't gotten any answers , I think i would be requesting one. Some of the symptoms you spoke of is what i went threw before i knew i had Lyme Disease, Now don't take me wrong many disorders and diseases are out there, but Lyme Disease can and often do mimic many other diseases, so Please if you haven't yet been tested, then please do get tested if you have yet to have any answers to this. Many with Lyme Disease never knew we was bitten in the first place, till we got really sick months or even years later.