Shortness of breath+ episodic GI motility + flushing = Carcinoid.
If not carcinoid then a tumor secreting biogenic amines. (Ovary or Lung are the most common sites). Some patients with elevated serotonin develop mental instability which doctors point to as "all in the head", and ignore the serotonin possibility.

I'd get the tests done for this. There is a new blood test that is easier than the 24hr serotonin urine.

Chromogranin A (CgA)

Most people have Carcinoid for many years, before it is discovered.

Also I am unclear about the timing of your Copaxone treatment. But this drug is known for causing pancreatitis.

And I cannot emphasize this enough... it happens here frequently.
Get your B12 numbers from your test. Don't accept "normal" because the ranges used today are out of date. If your test page does not flag 200 as low (or anything below 400), which it won't, you are living with a B12 deficiency and thinking you are normal. When B12 is low in the serum, it cannot transfer to the spinal cord either. This results in combined degeneration of the spinal cord, which mimics MS.

You may have more than one thing going on. So keep that in mind.

Do you know what it feels like for the first time in three years to have HOPE? Thank you for some hope!!!! I copied this, my neuro is great, he said he will run any test I want and re run them. Will go now and check my B vitamin results!!!!

recent lab tests:

Vit D 25 hydroxy 27.3
vit B12 625
IGG immunoglobulin 631 (low) could be the copaxone though I think

Gamma 0.70 Low

homocysteine 9.3 which is normal
NMO-IgG negative
thyroglobulin antibiody <20 so normal
paraneoplastic autoantibodies all negative
HTLV-I/II ab screen negative
thyroglobulin tumor marker 4.2 (normal)
Gliadin <10.0 normal
oligoclonal banding 0 so normal
myelin basic protein 0.60 so normal

spinal tap normal except for IgG which was 740 and low
vdrl csf negative

mri brain 5 lesionsand unchanged since 8/10

thyroid functioni tests all normal
liver elevated and kidney high output of protein(which I have had since childhood and no cause ever found)

having polyphria (spelling?)testing done tomorrow

for the carcinoid - I have called my MD who is going to look at the tests for it and see if I can get it tomorrow when I have the blood drawn for the above one. He said it was usually dry flushing which I do have at times, but mostly it's massive sweating (only when exposed to temperatures above 70 degrees)

I also have a pounding heart at times and a racing pulse.

So the B12 is in the normal range.

Keep an eye on it...as it might be going down, from a higher number. Some drugs do this, and the most common are the acid blocking drugs used for GERD.
They block the absorption of B12 from food, which is acid dependent.

The low D.... were you tested for sarcoidosis? Before raising your D you need to ask the doctor for this. I believe an ACE test is done.

If that is negative, then raising the D will help. The general rule now is 1000IU D3 daily for every 10 points you need to raise.
You are just about at 30, so to reach 50 (the lowest normal), you would need 2000IU D3 daily. This is more useful than the RX they give you. But for people with sarcoid...this is not indicated. The link to Vit D and sarcoid suggests keeping D low.

You know if I were you I'd sit down and carefully make a chart of what you had BEFORE you fell from the horse.
And another chart for what came AFTER.

This might help separate things out if you have more than one issue. All the medications you were given also can contribute to depleted nutrients, and various side effects, like the pancreatitis, etc.

I hope you find some answers soon! It must be horrible getting thru the day, now, for you.

I have not been tested for sarcoid! So that's one to add to my list! I wanted to ask you, you are so knowledgeable and for the first time in sooo long I have hope, we have been looking and looking and looking ourselves for the last few days. Have you ever heard of something called chiari ? we are also looking for stuff that mimics MS. My head is swimming with reading, but hoping to keep moving forward and keep looking!!!! Thank you so much!

We have a Chiari forum here. So you can take a look.

I had the impression that headaches, and vomiting were signs of this too.

But you know there is another cause of incontinence...it is called normal pressure hydrocephalus. NPH .. I would think your neuro would have thought of that, but it typically happens in older patients. Gait disturbances, dementia-like thinking and incontinence are the signs.

http://www.emedicinehealth.com/norma...article_em.htm

It is possible IF most of your symptoms occurred AFTER the fall that you jarred your spine enough to trap the flow of CNS fluid.

That might suggest Chiari, or NPH or something like that.
The possibilities I gave you are more internal medicine, because neuros often don't consider that ..and only look for neuro things.

Chiari is controversial...I recall when it was fashionable to blame fibromyalgia on Chiari... seems that has waned now and is not done like it was 10 yrs ago.

I don't know much about Chiari. A gal my husband knows at work, had this done when she was in mid 50's...the decompression surgery. She was having headaches, and behaving irrationally. In fact the first surgery didn't work, so she had a second, and now is back at work!

I the gliadin test was the only test for celiac that was done, you were not adequately/thoroughly tested. Check out the applicable forum here or glutenfreeandbeyond.org or celiac.com for advice on testing. And keep in mind that the testing is ~ 30% false neg anyway. The chiari may be applicable as well, present since birth but mild and aggravated by injury and age.
http://en.wikipedia.org/wiki/Porphyria
i am thinking this is the disease you will be tested for ?
and some persons have issues with the B12 testing not being accurate, your normal homocysteine at least partially lays that to rest, but a methylmalonic acid test would be good as well. Taking a small supplemental amount (1 mg/d) to try for a level over 1000 may be of assist as well.
so, if you haven't had the blood draw yet get the proper celiac testing done and the MMA level...good luck

katieindixie,

You mentioned Chiari, also look into hypopituitary disorder.......The pituitary can be damaged during a head trauma and is not easy to spot right away !!