New here, and hoping for a little help in figuring out what I should be looking for in terms of next steps. I am a 26 year old female in Washington DC.

The story starts about 7 years ago in May of 2002, when I noticed a sort of "tingly/numb" sensation in my right wrist/hand. I paid it no heed, but within a few days it had become more intense and also become very painful, I couldn't stand to be touched in that area. Within a matter of weeks it spread to encompass both my wrists/hands, also spreading along the arm near the wrist somewhat. sometimes it was a tingly sensation, other times stabbing pains, other horrible cold feelings, etc. I couldn't bear to move or use the affected areas, and even the slightest touch was painful. Certain points were especially bad.

Shortly thereafter, I also developed (within a few months) pain in my neck/shoulder on the right side, and also on the right hip. These places didn't so much have the tingly component to it (though I don't completely recall, regarding the shoulder). I also (a few months after that to a year after that) developed horrible back pain and then an area of my back near the mid-back that is persistently numb and yet painful to the touch. According to a chiro my T11/T12 were slightly out of place so I assume that was the cause, but this is still that way years later (the numbness/yet painful to the touch on the right side of the mid-back).

At the time, I went through several tests (complicated by being a college student with poor parents and no health insurance), including thyroid and SED rate blood tests, x-rays, and an EMG of my right hand/wrist/arm (and I think shoulder?). All were normal. I then had to stop seeing anyone for a few years due to lack of insurance and funds, until I got insurance my senior year of college when my mom got a better job. By this time I was somewhat able to use my hands again, if only through sheer stubbroness, and saw a new round of docs, who did an MRI of my hand/wrist, tried cortisone injections, iotntophoresis (sp?), PT/OT, and, because they figured as a last ditch effort it might be a lose joint, did surgery on my hand to stabilize my thumb joint. Long story short, none of it worked. Tests were also repeated for SED rate, thyroid, etc., as well as a test for Lyme disease.

I find my pain tends to be aggravated with cold and with usage, eventually after ruling just about anything else they could think of out, I was diagnosed with RSD/CRPS (esp. as pain is aggravated by cold). By this time it was 2006 or so.

Fast forward to early 2007, I moved to Washington DC for work after graduation and started having what I kept thinking were sinus headaches--pressure/pain in that area, etc. I DO get sinus infections, so it was a reasonable assumption. I also developed a persistent feeling like there was something screatchign at my left eye (I wore contacts at the time, and have severe dry eyes, so I figured that was just my lot in life there). I also started having--or should I say having mroe itnensly/mroe often--when appeared to be migraines of such, eventually by the summer they were much more defined and odder and I went off to see a neurologist. I was getting these odd episodes of this tingly/numbness all around my left eye and the areas around/under/over it, the left side of my nose, upper left cheekbone udner the eye, side of temple on left, etc. Also odd stabbing pain sensations in teeth (upper left) and left side of face, and lower left corner of jaw, some other areas I can't describe too well. Sometimes it would have a ticklish or pressure component to it, sometimes during these episodes it would feel as if I wasn't quite as aware of where my body was in space (but I wasn't actually falling over or anything, it was just a *feeling*, if you know what I mean), or I couldn't quite concentrate *quite* as well as I normally could. Neurologist ordered an MRI (to rule out brain tumor/MS) and then said was likely migraines, as there is family history on both sides of the family. None of the symptoms ever really went away, but there were fairly stable, I think, from fall 2007 till late 2008/early 2009, I even think I experienced a time when I didn't get as many of them. However, the left side of the face was always a bit odd/off, compared to the right.

Here's the really odd part, though--ever since the initial symptoms showed up in 2002, each time I've had surgery since then (3 times--once on the hand, once to have a mole removed, and once to have a bunion fixed) the nerves in the area that I've had surgery in have *not* totally "come back". They remain halfway numb--and yet somehow increased to sensation at the same time--years after the surgeries, in the areas surrounding the incisions. I know that this did NOT happen to me with surgeries prior to developing the odd pain/tingliness/etc. in the hands/etc., because I had 2 surgeries as a child and teenager to remove a birthmark, and my nerves came back 100% fine from those. One of my pain specialists I saw once (not the initial one, but one of the ones I saw briefly) asked me once when he heard that if I had ever been evaluated for neuropathy, but at the time I didn't pay much attention and it didn't register with me as I thought that neuropathy meant the total absence of sensation.

Fast forward to January 2009 or so. I started having more of the "odd tingly episodes" on the left side of the face again. In addition to migraines, btw, the neurologist was wondering (had been wondering for awhile) if some of the symptoms I got there might be some odd form of atypical trigeminal neuralgia.

I then noticed (only mentioning this as it pertains to level of stress in my life) what I thought were enlarged lymph nodes in my neck, and went through about two weeks where I was terrified I had cancer. Subsequent tests ruled that out, but during those two weeks I developed a tremor (stress? or the familial tremor my mother and aunt both have? dunno. my neurologist looked at it and said it is the "wrong" tremor for parkinsons or anything like that, it seems to get worse with stress. It comes and goes throughout the day, and some days I don't have it, I think, other days I have it most all day. I do notice it shortly after I wake up, sometimes, as if my body finds it stressful to wake up). Along the same time (again, mentioning for stress level) I transffered agencies and got promoted.

Then, about seven weeks ago, I was sitting on the train to go home after work when all of a sudden I just got this incredible vertigoish sort of sensation, like I was really lightheaded/dizzy, and I think I recall everything sounding kinda far away at the time? Do not recall if I had ringing in my ears or not. At any rate, it lasted maybe 30 seconds and then passed. But the next day in the mid-morning, I then got a sort of "rush" feeling (best way I can describe the vertigo feeling) that was much milder but also more perisistent and lasting. It did not go away although was worse at some times more than others. I went to the neurologist and she did an MRI "with IAC views" (something to do with inner ear, just in case ear was involved), MRI came back normal, and ENT said IAC views part was normal. By this point (about two weeks after symptoms developed) I had noticed that sometimes it seemed like I could feel my pulse in my head/through my body, rocking sensation as if my pulse were rocking me? Also, was getting pressure headaches (pressure, no or minimal pain), stabbing pressure feelings/odd tinglingy/ticklish feelings/buzzing feelings/wanna tear my face off feelings on left side of face, continuing to have the "rush" sensation occasionally, and was having maybe this odd "buzzing" sensation around/in my head/face. I went back to the neurologist (mine was on leave so I saw one who was filling in), that one ordered an MRA (too look at blood vessels) of the head and neck. That came back normal. Meanwhile, my primary care doc ordered a 24-hour holter monitor test for my heart b/c I was concerned about palpitations. That also came back normal heart rythem but fast heart rate (doc thinks it might be anxiety...I say, no *wonder* I have anxiety with all these mysterious medical issues going on for years that no one can seem to figure out )

Then, about two weeks ago I developed something where it seemed like every time I moved around I felt a horrible pressure feeling in my head. That lasted about a week and has (knock on wood) subsided somewhat. However, about a week ago I started getting more tingling in my face (including in some spots I'd never had it before--it comes and goes) buzzing feelings in/over my head/face, somewhat numb (but not totally numb? hard to tell?) feelings sometimes in parts of my face, and also tingling in my fingers that comes and goes (like the feeling you get when your foot has gone to sleep)?

I've also feeling fatigued (have felt fatigued for years, especially for last year or two), and often in conjunction with other symptoms will have a feeling I can best describe as "wanting to lay down".

In the past four months I have had an MRI (was normal), an MRA (normal), multiple CBC's and metabolic panels, multiple thyroid tests, another SED rate, a C-reactive protein test, a B-12 test (level was 400-something), a Vitamin D test (level was 18, I am now taking vitamin d supplements per my primary care doc's order's), two CT scans (ordered by my ENT to look at sinuses and rule of sinus issues and some other stuff). I was also evaluated by a vestibular PT (did this weird infrared eye camera thing looking for some eye movement thing called nystegmus (sp?), checked to make sure I could follow fingers, walk straight lines, stand on one foot, do stairs, walk one foot in front of the other, touch fingers to objects, make sequences of motions, etc. etc. Both neuros I saw--the regular and the fill-in--also evaluated me with various stuff like that, asking me to do stuff to check motor stuff--but <knock on wood> my symptoms are sensory, except for a possible thing I seem to get occasionally where it may be that like the edges of my vision black out [this can happen several times a day, or go days without happening at all]). I also wonder sometimes if maybe my left eyelid (the bottom half of it) is a little less strong than the right one? Sometimes I feel as if I can't squeeze my eye shut quite as tightly on the left as I can on the right, but not sure if that is due to actual difference in muscle strngth, or difference in level of sensation? I do also feel that area (and that eye) is slightly numb/sensation is off--in fact I know it is, in terms of sensation there, but it's nearly impossible to describe.

I am so, so, so, so, so, so scared. I don't know what's wrong with me, I'm bad at describing my symptoms (or even knowing how to describe what I'm experiencing).

I don't know that I've even had the right tests (I know nerve stuff can be hard to diagnose), I don't know where to turn, or what tests I should ask for, or how to talk to my doctor about all this, or where I should go for tests if I ask her to refer me for any (like many Washingtonians I don't own a car, so public transit accessible/in the area is good--DC/Baltimore?), and above all else I'm so terrified that maybe I have something horrible and fatal.... I'm so,so, so scared of dying.

Any help/advice/suggestions anyone can give would be greatly appreciated.

Hi Aliya

You are not alone here.
If you read through these pages you will find many people who are in similar situations.
You will also find heaps of good infomation relating to your problems.

That is quite a story.
You can still type ok, it would take me days to do all that.

Thanks. There were times when it would have taken me days, as well....The hand symptoms, for me, wax and wane, sometimes with no discernable pattern (except seeming to be worse with exposure to cold), but appear to have been stable for the last several years for the most part. The facial symptoms, however, at the moment, appear to be progressing and getting worse after having shown up about two years ago. I managed to well and truly freak myself out recently when I found a majority of sites proclaiming that the usual cause of trigeminal neuropathy (as opposed to trigeminal neuralgia) is sometimes tumor or something pressing on the trigeminal nerve (something called an 'adenoid cystic carcenoma' or something, deals with the salivary glands or such)...some sites seemed to indicate this was in fact the most likely cause (others in contrast said it was the cause of a small percentage of them, and still others were somewhere in between)...I've had a "clean" MRI of the brain and CT of the neck but I dunno if anyone got the jaw and such in any of my imaging studies, so that's one more thing in all this for me to worry about now I guess, not only do I have to be worried about the nerves, I guess now I have to again be worried about whether I have cancer or not. I really wish my next doctor's appointment was before June 9.

I have been reading through some of the threads, and found a few threads that appeared to have some links to lists of tests that should be done, or a site with lists of tests that should be done...However the website appears to be down? Do you know whether or not those lists are available elsewhere? I would really like to be able to have something to suggest to/show to my doctor, as I suspect I am fast reaching the outer limits of their knowledge....

Thanks!

I would get a cat scan of the sinuses.

I just attended a conference where they demonstrated trigeminal symptoms from sphenoid sinus infections. The sphenoid sinus is next to the cavernous sinus where the nerves to the eye and face are.

http://emedicine.medscape.com/article/1161710-overview

http://en.wikipedia.org/wiki/Cavernous_sinus

This is hard to diagnose. And some doctors don't consider it.
There was even a Mystery Diagnosis program on Discovery channel about a young woman who had this. Her presentation was more of acute pain, but it did affect her eye as well.

Thanks.

I've had a CAT scan of the sinuses, they looking normal, except for a very slightly deviated septum (so slight in fact that the ENT said a deviation of that level shouldn't cause symptoms of any kind for most people). I've also had a CAT scan of the neck to look at lymph nodes in the neck (due to the lymph node scare thing mentioned in the first post that came back OK). The ENT guy also did a rhinoscopy, where they take the little thing with the light and look inside your sinuses, it showed no evidence of sinus infection. I've also had the MRI of the brain and MRA of the head/neck...but I don't know (and do not think that) anyone in any of these things I've ever bothered to scan or look at the facial/jaw/under or behind jaw area where apparently these other things that can cause trigeminal symptoms can be. It has me well and truly freaked now (as they are according to every site I found an apparently very slow growing [over years and years] but always fatal, never curable cancer, and because I've been having odd fullness sensations in the ear on that side, and pain in the bottom jaw/surrounding area on that side, although I haven't found any obvious lumps or anything) and I wish I've found out about them *before* I saw my ENT last week, so I could've begged him to do a scan of that area. Otherwise I will have to broach the topic to my neurologist when I see her a week and a half from now, but I dunno if she will listen to me or not.

Maybe I should and get back in to the ENT next week...Or maybe I should wait for the neuro appointment and try my best to convince her I feel I need another MRI that covers that area (or a CAT, but most sites I've seen seem to recommend MRI), though I expect her to balk at the idea...In the meantime I'm busy wishing I'd never, ever, ever found the site about those salivary gland tumors and the trigeminal nerve [which I found after making my initial post here last night, but before I made the second one], it seems to fit too well and I'm even more scared now....Thanks for listening to me rant.

I don't know where you are being treated (Georgetown U Hosp?),
but I'd go up the road to Balto to Johns Hopkins for more testing & treatment.
Also - www.lizajane.org
has a downloadable batch of files for PN -
one for all the tests known to test for PN.
Go there.

Have you had a recent chest Xray?

During the discussion period of the conference I attended, they presented some unusual case histories. Then asked the audience to comment...no one ventured BTW...One was about a 50 ish woman with ear/face pain on one side, who seemed to have a trigeminal trigger and headache. The doctor who gave this case was very very well respected...and you know what it was?

She had a lung tumor pressing on the vagus nerve in her chest and THAT was missed by her referring doctors. Sadly she was too far along with several metatases and died the next month.
But everyone was looking in her head, when in fact the problem was in her lung.

I am not saying this is your case, but like the presenters at the conference kept repeating.... people are complicated and there are surprises all the time!

Also ear pain can be from an ear infection that has spread to the mastoid process. A poster here on RSD just posted this thinking it was RSD related and in fact it was a mastoid infection. There are just so many possibilities. Keeping all the test results and doctor visits can become a huge task in itself!

I hope you find your answer soon.

Currently being treated at George Washington University, which along with Georgetown is supposed to be a pretty decent hospital. Not necessarily too impressed, though, now, because apparently I just discovered I didn't get the entire proper workup for the facial pain that I've had for two years (most stuff I'm now finding seems to indicate that the moment I developed facial pain, the area relating to the jaw and salivary glands should have been MRI'd or CT'd along with the brain...this was not done, now I am flipping out).

Thanks for the link. I've tried to get to the website a few times over the last day or two, but it appears to be down....Is the file available anywhere else?

Thanks.

No chest x-rays here since I was about 10 or 11. Maybe if I go back to the ENT I will ask him about getting a chest x-ray just to rule that out, along with asking him about the salivary gland stuff. I have decided I am definitely going to try to go back to the ENT next week, although they will totally hate me at work for it (I take sick leave, like, twice a week to go to doc appt's). I just hope he has appointments available. I am just kicking myself for not finding all this stuff 24 to 48 hours earlier, before my appointment last Friday, where I could've brought it all up.

Re: ear infections, he did not think I had one (when he looked in my ear), he said my eardrum was "slightly retracted" but he did not see any active infection, he thought the retraction of the eardrum meant I had had some infection "in the past", as he did not see anything when he looked in my ear.

Hi Aliya, that b12 level number of 400 something is on the low side. It may not be flagged on the blood test results because the US has a lower acceptable number than other countries. here is a website of a person who has posted on boards for years and whos research in b12 has helped many posters here and on other boards
http://roseannster.googlepages.com/

b12 is needed in order for damaged nerves to heal and its deficiency can cause many symptoms. I have no idea if it is contributing to your problems but it is something to check out and is easily treatable.
Also since you have dryness of the eyes have you checked out or been tested for sjorgens?

As far as your being afraid of the unknown that is perfectly understandable and something all of us have experienced. Try not to drive yourself crazy while researching on the internet. There is a lot of inaccurate and conflicting information out there. It helps in order to get ideas on what is possibly going on but try to stay calm since fear and stress only make PN worse.