Hi all does anybody with AMN suffer with really bad stomach pains and feel very ill was told years ago I had ibs

[spalding]

ALD carrier’s female

[jolocny Volunteer]

Hi Spalding,

I don't have the pain or feeling bad that you're asking about but I do have trouble with having a "normal" bowel movement. I've found a doctor to help me deal with that and acid reflux due to a small hiatal hernia.

I know what a pain it is to keep going to a doctor to get things straightened out. I feel this is something that you need to see a gastroenterologist about. Have them do a total exam and help you with this. I know how desperate I feel when I start with constipation feelings, I can only imagine how IBS and all that can go with it must be! I have a sister-in-law who's worked with IBS for a long time and can be miserable with symptoms.

I hope you get this looked into, Spaulding! AMN can be bad enough, IBS on top of it can't be good!

Take good care of yourself!

[spalding in reply to jolocny]

I am having tests done my gp has been really good I had a scan on tummy and that was fine but a couple of months ago I had really bad gastro enteritis so she thinks the bug in my tummy has not gone and she is going to check vitamin B12 as it can effect gut and it’s linked to AMN

[kevinmom]

I have been having problems, I see gastrointestinal Dr . I have IBS-C. Was told its probably due to the AMN because of neurological. I have recently started taking fiber pills and that seems to be helping some what

[Olivia_Bostock]

A recent study presented at the ULF conference actually did link IBS to women with AMN. I have it myself and I am a carrier, so I am not sure if this is an early symptom or just a coincidence - I get frequent very bad stomach pains. Also, if you have carrier-specific questions, we now have a page set up specifically for carriers called 'Leukodystrophy Carriers'. The link is: healthunlocked.com/leukodys...

[momofg]

I have horrible stomach pain all day every day. Have had it ever since I was young. It's just who I am.

[Travzw]

Here in the US, they call it neurogenic bowel. It was the first symptom I had. This was when I was under 10 that it first happened. Gastro doctors here prescribe laxatives and miralax. My stomach usually hurts every day, or I just feel really uncomfortable.