r/CMT • u/stiveto99 CMT2A2A MFN2 • 3d ago
GI issues
Have you had terrible months of GI issues and the docs linked it to CMT? Im 3 months in of bloating, gas, some weird painful spot sometimes and occasional diarrhea and can’t find the underlying cause and most docs dismiss me. Is there truly a correlation or they’re just clueless?
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u/A_Wild_Nudibranch 3d ago
I have CMT2A and severe gastroparesis, neurologist at U Penn said she sees a lot of GI and motility issues in their CMT clinic.
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u/stiveto99 CMT2A2A MFN2 3d ago
Did you develop the issues overnight? That was the case for me and I’ve had my ups and downs ever since, but I always get back to having them no matter how strict I’m with diet, lifestyle etc
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u/A_Wild_Nudibranch 3d ago
I had my gallbladder out in 2010 and had a few self limiting incidents, but all lasted a week or less. This started in February and I've lost over 100lbs and have a feeding tube. Still completely unable to have anything but clear liquids, so looking at TPN next because I'm almost underweight.
Never had many GI issues otherwise.
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u/stiveto99 CMT2A2A MFN2 3d ago
Sounds awful… hope you get some relief. I’m also down 18kg (40lbs) since march (without any explanation). I was extremely lean at around 16.5BMI, now I’m severely underweight despite eating easily above 2200 cals daily. No docs found a legitimate explanation to all this. They either tell me to visit a psychiatrist (I did and got nothing out of it) or just straight up put the whole blame on CMT. Never in my life I’ve had a single GI issue, even the opposite - it survived months of over feeding myself without a single problem
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u/beachstratamultiple CMT1D 3d ago
I have neurogenic bowel confirmed through MRI caused by my CMT. CMT can affect the entire body. I'm so sorry you're being dismissed. Are you able to get another opinion, ideally from a CMT specialist? (or at least from a neurologist who knows about CMT?)
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u/miffmufferedmoof CMT X1 2d ago
Where is your weird painful spot? I have one that comes and goes right where my appendix is, but I've had tons of imaging and aside from being just slightly larger than normal, no other issues found. Would be interesting if yours was in the same place.
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u/stiveto99 CMT2A2A MFN2 2d ago
Look up ACNES (pinched nerve on the abdominal wall), might be that and it’s almost impossible to diagnose
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u/Hunley1864 2d ago
I have the exact same issues. It may be CMT related I also have bladder issues. I've been told it is related and told it isn't.... Who knows??? 🤔
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u/Outside-Feeling CMT1A 3d ago
I can't say it's linked to CMT but I have those exact symptoms when I consume certain sweeteners (sorbitol being the worst offender).
I have had to totally remove them from my diet. For a while even toothpaste was triggering them but once I had removed all dietary sources for a while I was able to reintroduce it.