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.

I have seen a neurologist, GP/internal medicine, and an ENT (listed w/ the various tests broken down below...it was actually the pain specialist I saw for awhile, who I didn't list on here, who suggested that maybe I needed to be "evaulated" for neuropathy instead of RSD. I dunno where to go for that though, or what tests to ask for (the LizaJane site is down, so I can't go there to get a list). Until this all showed up when I was about 19, I had always been really, really healthy, so no other health conditions before this. What do you see here that has NOT been done that should be done/considered here, for me? (Right off the bat, I can see from some research I've done recently that somewhere along the years my doctors should have done an anti-HU antibody test [tests for cancer-caused neuropathies, it looks like?] and definitely an ANA test [for lupus/etc--I think no one ever did that one b/c all my SED rates kept coming back normal]). What else am I missing here that I should be asking for?


Neurologist (have had two of them, one in each city I lived in): Did MRI of my hand/wrist where my symptoms started, x-rays of hand/wrist where symptoms started, EMG of hand/wrist where symptoms started, cortisone injections (thinking maybe it was inflammation of the tendons causing the pain, they were just guessing), MRI of brain w/ and w/out contrast (normal), second MRI of brain w/ and w/out contrast 2 yrs later (also normal), MRA of head/neck w/out contrast (normal). Also routinely makes me walk in straight lines, follow her finger with my eyes, touch all my fingers together, make fists, blah blah blah. Most of <knock on wood and pray really really hard> my symptoms so far are sensory, though, except for some tremors. So far <again, knock on wood and pray really hard> I do fine on all the walk-a-straight-line-and-such stuff. Because of this I feel my doc isn't taking me seriously in terms of how concerned I am over my symptoms.

GP/Internal Medicine (again, one in each city I lived in): CBC (three times), Thyroid (three times), SED Rate (three times), glucose/etc., Lyme disease test, Vitamin B-12, Vitamin D, complete metabolic panel, basic metabolic panel, c-reactive protein, hormones, cholesterol, iron levels, 24 holter monitor (heart monitor). All normal except Vitamin D was low, and Vitamin B was on lower end of normal.

ENT: CT of sinuses, rhioscopy [where they put a little scope inside your sinuses], CT of neck, MRI of neck (skull base to thorax, I am hoping they got some of the face in there too but I dunno) to check salivary glands (no tumor or stones were found, he thinks they are perhaps just backed up or inflamed on the one side?), also will soon be doing a look at my esophogas at my insistence.

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!

Hi. If you can see a reumatolgist who can maybe test you for like you said lupus and other types of auto immune. Also you said your b12 is low and do you know the results? Many here take supp and it helps them. You also said d is low so I hope you take a calcium with vitamin d as well. I saw your post on Hopkins and I know when I was looking into Mayo they had me send my records to them and they had a team look at them to review and see if they felt they could help me. I wonder if you call Hopkins if that could be an option and possibly they could direct you to the right doc. From what I have been told by my current pain doc is rsd and pn have a lot in common. The thing with PN is if you can find the underlying behind then you treat that and it can help repair and recover. With rsd it is managing the pain levels. Of course I could be off in what I am telling you or getting things mixed up. I do feel in both that proper pain treatment is key. What about an mri of the brain. I have this in my legs but also when I developed the severe ear/eye/head pain they did another mri of my brain and the ear to see if something was pressing or fluids etc. I would look into that cause I too thought I had a horrid ear infection the pain was so bad but it was not and the mri also did not show. Well sending thoughts

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