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.

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.

Aliya,

Do take the B12 (at least 1000 mcg per day) just in case. A very small percentage of the population is deficient with results much higher than that. If you take care of that possibility, you will be treating one of the conditions that untreated will eventually lead to terrible disability and death.

While you are doing that, you can explore other possibilities that may exist alone or in combination.

Best wishes. You are in a great place for support and information. This forum has been exceptional for years.

rose

Rose!
So good to see your post.
You've been missed.
Hope that we'll see more of you.

Also...This question was asked by another in another thread, but I am set to see my doc on Tuesday and so am looking to get everything together and the website is still down after a week or two...Does anyone have a copy of the LizaJane test spreadsheets/etc. that they could send me (I can provide e-mail)? I would really like to have these. Thanks!

A few thoughts and first I am sorry for your pain and suferring. I have RSD and PN and came to this board at 28 and now am 30. I understand how scary and painful this is. My pain started in my left inner ankle/foot/calf but since then spread to my right and also have severe eye conditions that have sent me to 11 eye specialists which also spread to my ear pain and have migraines at times. I also am effected by the cold where my pain is so bad I am crying again. I too have had multiple mris,emg,etc. Many neuro apts,reumo,etc.
A few ? how is your rsd pain being managed and treated? This is very key and if you go over to the rsd forum there are a lot of imformed people there. I am on my 4th plus pain doctor who has begun to really work with me and look outside of the box and I hope you can find the same because we are hard cases being young with so many symptoms. I never know with myself since there is so much unknown about rsd if a new condition is the spread or something unrelated. Many over on the rsd board in addition have a lot of what you stated. Are you on any meds? I know you stated the tests you have had but what doctors have you seen? Like neurologist,endocronolgist etc? Do you have any other past health conditions or sicknesses? Any other problems you have had that could of contributed? If you want you can email me any time. This board has been amazing to me and I hope you find the same

You had said that your EMG had come back normal.
Did you have one since that time that came back abnormal to indicate that it could be peripheral?

Because things like MS are in the CNS, and peripheral neuropathy points to a problem in the PNS.. and thus the 2 are different systems.

I was lucky in that although the rest of my testing has come back negative, my EMG shows moderate nerve damage of 2 types.

If your EMG is clean and you have things like TN, and nystagmus, and other indicators of MS, then it could be a while for you to get your diagnosis, as its easier to pick up during a flare, and you need to have 2 seperate scans, and another diagnostic test to be diagnosed with MS.

Have you had a spinal tap to check for O bands? (or other things?)

If you haven't had a spinal then thats what I would do.