Hi
Not a nice thing to have happen to you at any age.
I have a similar case only not as severe.
Rather than write it all again, look up my profile.
If there is anything I can help you with, just ask.
Your reference to a intestinal symptom interests me as I have something starting to happen around my tailbone area.
I will be seeing my Neurologist again soon to have some more tests.
I am hoping, now that my symptoms have develeloped further, a possible cause may be found.

Hell0--and welcome to our forum...

Are you a male or female? I ask because for a female that
ferritin is high. For a male it is still in a high range but high normal still. (unless Canadian reports different number ranges--which is possible)

Elevated ferritin may point to hemochromatosis. This is a genetic condition that deposits iron in the body and is very
serious. (may lead to death).

Your first B12 test was borderline low. Did you take supplements to get that second reading?

The gurgling you are having is probably gas. Do you take acid blocking drugs? Or perhaps are lactose intolerant, or have you had antibiotics recently? There could be many causes for the gas.

One has to look at what happened just before your first symptoms. Did you have flu with stomach issues? Vomiting/diarrhea? Were you exposed to any toxins, solvents, etc?

One cause of creeping neuropathy can be gluten in the diet.
This peptide from wheat/barley/rye passes thru the intestine and can cause neuro symptoms. Going Gluten Free and following the diet can help some people with neuropathies.
Gas and diarrhea may also be a symptom of this.

You can learn more here:
http://neurotalk.psychcentral.com/thread1872.html

The testing is complicated.
This recent thread has some testing suggestions:
http://neurotalk.psychcentral.com/thread67148.html
One has to be eating gluten containing foods, before testing
to get a reliable result.

Hi I developed this at 28 too and now 30. I understand your fears and feelings and can relate. Try to stay in the moment though very hard but things can get better. Have you had other health conditions in the past? Dietary conditions? I know you mentioned no alchol but other abuse like drugs?Through this I have been to so many specialties I can't tell you. It is frustrating but you have to keep looking for the why and finding the right treatment. So maybe you can look into see another type of specialty doctor. I am not sure what type of doc you saw at the Miller center. I am assuming a neuro so if you have not see a reumatolgist that may be in order. Hang in there and if you want an email buddy I am here

Hey Daniella,

Thanks for the reply and your kindness.

No other drug abuse...or dietary conditions that I know of. (Which makes it all the more fusterating.)

Its comforting to see other people my age are also inflicted by this... you don't know how many times I have heard "At your age its near impossible to have this"

Thanks again... hopefully we can all get through this togeather.

Yes I understand. Basically once a week I am told by someone you are too young to be here or have these problems. It is hard and especially I feel like many my age can't relate but I try to focus on the good supports I have. Do you have family that can help you? I really encourage you to ask them to go with you to apts. I agree with Brian a well. You sometimes have to look outside the box. I would see your gp. Hang in there

Thanks so much mrs.D for the reply! I am a male, and although the Ferritin was high they didn't seem to concerned with it at this time, although they recommened I get it checked yearly to keep a eye on it.

Yeah, the B-12 was kinda weird, as I didn't do anything different or take any supplients in between tests (although they were suspisous that i was dehidrated for the frist test)

In regards to the first systoms... I can't seem to remember anything special, it really just happened out of the blue. (I was drinking quite a bit of Diet Coke before that time... which I have since stopped... thats all I can think of.)

I never though of the Gluten appraoch, but its worth a look for sure (I do eat quite a few things that contain it), I'll mention it to the Neuro and see what she says.

Thanks again.

Thanks numbfoot,

Appreciate the kinda words

I hope all goes well with your Neurologist and hoping its just gas... (Which I hope is the same in my case as well.)

I'll keep my fingers crossed for everyone here and myself!

Hi and welcome, I noticed they only done a fasting glucose test [ twice]which can be pretty useless in diagnosing prediabetes and diabetes 2, it is not unusual for prediabetics & diabetics to have normal fasting levels but once tested properly with a 3 -5 hour glucose tolerance test it can show a complete differant story, I was told I didn't have any signs of diabetes after a fasting glucose test but my neuro sent me for a glucose tolerance test and it turned out I was prediabtic, the cause of my nerve damage.

just a thought
good luck
Brian

Very interesting!

Thanks for the tip Brian!! I will most certainly will look at having a glucose tolerance test (if not by my neuro, i can easly get my family doctor to have these setup for me).

Thanks again for taking the time to reply. Its much appreciated!