Newly diagnosed SFN :(
 

I have been struggling with nerve pain which started last September in my right arm which has slowly spread to both arms, hands, feet,legs and face, with random burning patches elsewhere, also balance problems, after much testing mri etc etc my neuro said as everything else is normal it must be small fibre neuropathy. He gave me no other information even when I quizzed him. Just that he'd see me in three months and have a px for tregatol to add to the gabapentin and I will see you in three months.

I do have gritty eyes, sexual dysfunction/ dryness as. Well

I have kept a diary over the last few months and have noticed a definite increase in pain/symptoms for about a week before my period, anyone else noticed this?

My neuro did not seem interested in finding an underlying cause how important is it to peruse both a fully confirmed diagonosis and the cause?

I am feeling pretty crappy about it all and abandoned by the neuro with no info

Hi,
Welcome to neuro talk! I have found that once doctors do a certain amount of testing and if they can't determine a cause for neuropathy they stop looking. They prefer to treat the symptoms. Actually, from what I have been told it doesn't matter what the cause, the treatments are mostly the same. The exception is for hereditary neuropathy.

There are wonderful people on this site with a wealth of knowledge regarding neuropathy. There are many supplements that can be used to help manage the symptoms of neuropathy. Mrs. D is wonderful with that and any others questions regarding the meds you are taking.

Get a list together of the bloodwork you had done so the people here can see if your doctor missed something. As for feeling abandon by your doctor, I think next time you go it would be a good idea to gather a list of questions and possible test you may want done and/or meds you want to try. Sometimes first visits do leave people feeling lost.

If you continue to feeling abandoned after your next appt personally I would find another neurologist. :)

Welcome!!

It sounds like you would benefit from a full work up for various possible causes of your neuropathy...to include autoimmune disease. Your symptoms can be associated with Sjogren's and there is a relation with this condition and SFN.

But it might be beneficial to confirm the SFN diagnosis with a skin biopsy. In the meantime, various blood tests for autoimmune disease can be done. I would also suggest having your B12 checked and blood glucose tolerance test.

Not looking for a cause limits your best treatment options. So if your neurologist is not interested in exploring possible causes, then I would start with finding a new neurologist.

There are several supplements that can also be helpful and the 'stickies' at the top of the forum will provide more information. But again, best to find out exactly what is going on first...and why, then begin a process finding the appropriate supplements and treatment.

Thanks for replies

It was my 2nd visit to this guy, I did push him pretty hard for answers (I am a nurse so know what consultants are like) but he was not v good at all.
I have had a fast bloods for diabetes which was fine. My b12 was ok as far as I know.
I did think about sjogrens after looking at the SFN stuff

Thankfully my GP is great so I think I will see about a rehmatologist referral to look at autoimmune stuff.

Just to complicate life I also have polycystic kidney disease which effects what drugs I can take or the dosage, and makes my wary of too many supplements. I and taking a women's multiple vit supplement which covers the b vits.

Gp did say about the contraceptive pill as that would stop the body temp rise before my period which effects my symptoms a lot.

I feel like I am on a roller coaster of emotions at the moment and am worried about being able to work, driving feels as important as breathing to me and I am scared I will not be able to drive, the unknown is something I am not good with dealing with guess I need to start dealing with it lol

So you have a good series of references--
 

--of possible neuropathy causes to test for, take a look at these:

http://www.questdiagnostics.com/test...ripheralNeurop

www.lizajane.org

http://neuromuscular.wustl.edu/sensory-small.html

http://neuromuscular.wustl.edu/sensory-large+small.html

Welcome to NeuroTalk:

There are some things you can do for yourself right now.

To help with the eyes and PN... start using a quality fish oil, 2-3 caps a day with food, or 2 Krill oil. This will help with the eyes and inflammation. Also 1-5mg of biotin may help this too.
Omega-3 fats are now used in ophthomology to treat eye disorders.

Also make sure your B12 and Vit D are tested. You should be at 400pg/ml at least (ask for the numbers) and a level of 50 for the D. Sometimes doctors test but don't interpret the results accurately yet.

Soaking in epsom salts baths may help with magnesium issues.
Magnesium works with Omega-3's to help repair tissue. 4-6oz in a bath of lukewarm water for 20 minutes may help the feet and legs. You and rub the water over your arms too.

These will help until you get a clearer diagnostic result.

You mentioned you take a multi vitamin to get all your B vitamins. I take all mine seperate to avoid the B6 supplement as it irritates my nerves. I avoid it supplemented in anyting like breafast cereals and sports drinks. I have found others that it bothers too. Something to look into that might help.

I am going to have to get my head round the supplements lol, I have always taken the multi vit and have just checked it does have vit B6 in it so looks like I need to sort out what I need to take. Thanks for the advice :)

An ice pack at night is the only thing helping at the moment, I am just going to make myself a cover for it rather than a tea towel.

Feeling wiped out today I think from this carbamazepine is making my feel grotty, but not helping with the pain yet.