new here, advice please
 

Hey guys,
only my 2nd post. I feel like Ive found the right support group finally

long story short-undiagnosed pain for 1.5 years , burning, pressure, and tingling usually between my thighs and belly but definitely have had periods of time where the numbness and tingling were in my hands and feet. Feels like there is a fire under my skin across my stomach and up and down my back-especially tailbone/sciatic nerve/pressure in bum (embarassing to say!)
Noone can diagnose me. elavil didnt work, oxy's helped but made me feel weird..now on nucynta.

blood sugar problems, although never diagnosed because blood tests were normal.
had ct scan of abdominal and pelvic area, xrays, ct of brain

feeling crippled ..every day is a nightamre..and I am only 28 : (

advice? doctors are stuck, and feel like they just want me to go away!!

Welcome to NeuroTalk:

Can you remember what was happening to you just before this started? Did you have an illness, take antibiotics, get vaccines,
have an injury or fall? Sport injury?

Did you have an MRI of the spine?

Do you do alot of heavy lifting work, long hours on your feet?
Exposure to solvents?

Figuring what to do, really should start with some detective work.

Did you have a B12 test? Do you know the result in numbers? (including concentration)

Hi there, thanks for the response. I should clarify that what I meant from "between my thighs to belly" is that the feelings happen anywhere from where my thighs are all the way up to my belly, and around the back-so front to back, up and down

Before this started, I had just finished a course of macrobid for a UTI. 3 years ago I fell on my tailbone on cement but didn't have any symptoms once the bruise went away.

No to the MRI, but just had one booked. FINALLY.
I had been a house cleaner for 7 years. My other job is retail-so many hours on hard floor on my feet. This only started when I began the retail job (health food store)


b12 results were 234pml/l (normal scores above 130)

creatinine has consistently been low (under 45 UMOL/L), but urologist says its o.k because I'm so small and don't have a lot of muscle.

ferritin always low
DHEA test for adrenals was way out of whack.
always noted was that I don't absorb my fats well.

what do you make of that!?

You are still low in B12:
your pmol/L converts to 317 US units:

http://www.unc.edu/~rowlett/units/sc...ical_data.html

I'd start on B12 oral now, and take 5mg daily, for at least 3 months.
Methylcobalamin which you can buy on iherb.com which ships overseas to about most countries. Pennies a day.

400 pg/ml US converts to 295 your units... which is the lowest acceptable normal today. (lab ranges for B12 are pretty outdated, by the research, so you cannot trust those anymore.)

Low creatinine reveals that your kidneys are working well. ( if this is a serum test result).

I'd look at your shoes, and make sure if you stand for long periods you have good support and cushioning in your shoes.

Tailbone injuries are sneaky. If you can sit with no problems, you may not have a big issue. But if the tailbone was broken and the bits moved around, you might have to have that looked at eventually.

Hello feather bullet
 

Glad to have you at Neuro Talk. You really did find a great place for information and support. I totally agree with MRS.D. Go over anything you might have done before this pain happened. B12 has alot to do with PN in some cases. Also the best test is the MRI of your lower back. Having those shooting pains is no fun, and being so young, I sure wouldn't want you to have that your whole life. Try to find a good Neurologist. Your primary Care Specialist may give you the referral. Be your own best advocate, and don 't let them brush you to the side, because they don't yet have an answer. I fought to get the answer I needed with my case, and I didn't take a NO. I found my own specialist who did accept me and found out what was wrong. Don't give up and continue to find help. I will be here any time you need to talk. I sure wish you all the best as you search for a resolution. I hope alot of others on NT respond to you also. Take care, ginnie

hey -very helpful you two.I really appreciate it.
I have a B100 complex I should be taking. I work at a health food store and we do sell methylcobalamin. I don't eat much red meat, so..

I can't sit at all without pain. even with the friggan doughnut : (

It feels like my nerves in that area are all tied up in a knot and inflamed . I get intense pressure in my bottom and as I have described it many times-I feel like someone took a sledgehammer to my tailbone. When I said that to the doctor at the ER last year she said nothing was wrong with me , not giving me anything more than tramacet for the pain, and to go home. What a bad day that was.

Hopefully the MRI will provide a diagnosis. It would be great to have a neurologist. I see a doctor of internal medicine in a week so I pray he will lead me down the right path. A year has been taken from my life so far..I will not waste any more time.

If possible--
 

--make sure the MRI looks at the pelvis and the lumboscaral spine as well as the tailbone area; often, only lumbar spine images are ordered, and may miss things going on with the lower sacral nerve roots or the pudendal nerve area.