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

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

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

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.

One of my brain MRI's included IAC (inner auditory) views which were reviewed by my ENT.

I apparently do not have nystagmus, I was tested for that by a PT/Doctor who specializes in testing for vetigo related stuff. I have not had a repeat EMG since then...and I've never had gone of the face (where my atypical facial pain/atypical trigeminal issues are), just of the hand/wrist/arm. Hmm.

I've also never had a spinal. What are O-bands, and what do they signify?

--oligcolonal bands--evidence of immunolglobulin proteins--which, when found, especially in spinal fluid, often point to some form of autoimmune disorder (most commonly MS, but also possibly lupus or neurosarcoidosis).

This is especially true when these immunoglobulins cannot also be detected in serum.

Take a look at:

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

Now, as regards some of the other stuff you've written about, while you have had some range of tests, it seems as if there's been a lack of serum tests for conditions that might cause neuropathy.

I've just been able to get into LizaJane's spreadhsets by following this link:

http://lizajane.org/

The LizaJane site is back up.