[ewhite1052]

Hello everyone,
I have been reading this forum for the past few weeks (you all are so supporting and knowledgable) and I thought I would introduce myself and maybe get some helpful tips for my next Nero visit Tuesday.
I’m a 28 year old American living in Toronto with no real neurological problems in my family with the exception of my grandmother on my father’s side who had rheumatoid arthritis since she was 8.

It all started about 4 months ago when I woke up one morning with my toes tingling, this then quickly turned into my feet with a cold feeling. I went to the local walk in clinic who said that my shoes must be too tight and to not worry about it. (Even though I swore up and down I don’t wear tight shoes ) This continued for another week and I went in again and finally got a trip to the neurologist, who then sent me off for my EMG / Nerve Conduction, which turned out negative and had the following blood work done:

Normal Results: Glucose Serum Fasting (took twice), Creatinine, eGFR, Sodium, Potassium, Chloride, CK, sTSH,Cholesterol, Alkaline Phosphatase

Abnormal Results: Urate, Ferritin (317, took second test was 271), Vitamin B12 (442, took second test was 776), Hemoglobin (177, took second test 172)

After these results the neurologist said their was nothing he could do and didn’t see anything out of the ordinary. It was after this that I decided to take a trip to the Jack Miller Center in Chicago, and hope that I could get some answers. (Unfortunatly this wasn’t the case.)
In the mean time the cold, turned to pain, and had gone completely up my leg to my behind.
Upon arriving at the Jack Miller Center, I met with a very nice doctor who was the one of the heads of the dept and went through the following tests.

Normal Results: CRP, Sed Rate, Hepatitis C, SSA, SSB, Lyme EIA, IPEP, Paraneoplastic ABS, MRI of lumbar spine, cervical spine and brain, Vibration, Prorioception and temperature.

Abnormal Results: ANA 1:160 (which he said was fine as the results tended to run high at this particular lab)

They suspected small fiber neuropathy, but sadly enough they couldn’t find anything and I went back home to Canada. (It seem if you don’t have Diabetes or have had a history with alcohol then you are pretty much out of luck)

All was not lost as I was able to get another apt with one the best Neuros on Neuropathy (so I am told) in Canada. Meanwhile the pain has now moved behind my arm and I wake up in the morning with large “gurgle” sounds in my lower intestine, which tend to pass a few mins after I get up. (Could this be a sign of “automatic” nerves being attacked?) Up until this time I was pretty calm about everything since it seemed like I might be in some pain for life, but it wasn’t life treating…. Now I am really freaked and saddened that my autonomic nervous system might eventually be crippled by this. I still am looking forward to having kids and living out the American (well I guess Canadian now) dream… I am very worried that this all may be in jeopardy.
(Do people die from small fiber neuropathy??)

I really want to capitalize on my next visit and was wondering if anyone else my age has been in this situation and what other things should I have the next neurologist check / ask questions for? (I am in the process of filling out the sheet sent by LizaJane already)

Some things that came to mine for me was…
Could I get a check for Vitamin B1? (The other two neurologists said this really isn’t a major cause of PN… but my friend Google tells me different.)

Should I be concerned with the ANA test? 1:160 seems high considering some people are diagnosed with autoimmune problems at 1:80.

To be proactive, would it be worth getting a Vitamin B12 shot? IVIG? (Expensive I know, but from what I have read people with small fiber neuropathy have benefited from it)

Thank you so much for taking the time to read this, I hope we can all eventually find some relief for this depressing and debilitating condition.

[gardengrl]

Hi, I'm sorry that you are going thru so much....I know you must want some answers. I'm NOT familiar with your condition,,,but wanted to say hello & welcome. I am sure someone can help guide you to the right forums! You are right,,,this place is full of very caring people! Good luck

[ewhite1052]

Originally Posted by gardengrl

Hi, I'm sorry that you are going thru so much....I know you must want some answers. I'm NOT familiar with your condition,,,but wanted to say hello & welcome. I am sure someone can help guide you to the right forums! You are right,,,this place is full of very caring people! Good luck

Thanks for the warm welcome!

[numbfoot]

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.

[mrsD]

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.

[daniella]

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

[ewhite1052]

Originally Posted by mrsD

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:

The testing is complicated.
This recent thread has some testing suggestions:
One has to be eating gluten containing foods, before testing
to get a reliable result.

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.

[ewhite1052]

Originally Posted by daniella

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.

[ewhite1052]

Originally Posted by numbfoot

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.

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!

[Brian]

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