digestive problems

[Guest guest]

Dr. Lawrence from the UK suggests digestive enzymes that are animal-based.

[Guest guest]

Will,

No. Never any digestive problems here. CMT is a 'type' of peripheral

neuropathy. A long time ago, CMT was known as 'Peroneal Muscular

Atrophy'. Be careful what you read.

~ G

[Guest guest]

I believe it is possible for CMT to affect your autonomic nervous

system if so digestive problems can occur. My son's doctor is

considering involvment of the autonomic nervous system with his CMT

type 1A. He also has problems with breathing and rapid heart rate and

cyonic feet. We have been to a cardiologist and his heart seems fine

so he feels it may be involved as well.

[Guest guest]

" Digestive problems and breathing problems have been noted in isolated

cases of CMT "

http://www.geocities.com/dgosling_rn/cmt.html

and

http://www.lindacrabtree.com/cmtnews/Gastrointestinal/subtitles.html

[Guest guest]

Hello ,

EdM from NH here. Yep, me too big time. Protonix in the mornings

helps a lot but is rather pricey.

[Guest guest]

I have been having serious digestive problems for the

last couple of years. I have what the doctor called

esophogeal spasms. This is when the acid comes up

into your throat and sometimes up your nose. The

doctor at first considered doing surgery, but has

since changed his mind. He is afraid he could make my

situation worse than it is. I don't know if this

because he took the time to find out more about CMT,

and it made him nervous doing surgery on me. I also

have a hiatal hernia. I also had the test where they

went down and looked it over. They also planted a

microchip to test how bad the reflux is and it is bad,

but I have to find a medication that Medicare or

Medicaid will pay for. There is one that helps but I

can't get, so I have a very limited diet, and I do the

best I can with what I can get. I also have intestinal

problems too, but it has become something I have just

learned to live with because no doctor can explain why

or do anything to change it. I figure I am one of

those rare situations where my digestive system is

affected by CMT.

All I can say is good luck with your situation. You

are not alone.

[Guest guest]

,

Hi thanks for telling me that. Actually I had my heart checked out 2

years ago because my heart seemed to race and seemed to miss a beat

sometimes, which it still does but the heart hospital couldn't find

anything wrong at the time. So yeh that's pretty interesting what you

say. Please let me know the outcome of your son.

[Guest guest]

Will, I'm not clear about this.

What is the connection between Scoliosis and digestive issues?

[Guest guest]

Silly questions, perhaps, but ...

What happens to those signals in the brain if they can't be delivered? Also, are

there any changes in the part of the brain that controls these areas, which no

longer function?

Just wondering.

[Guest guest]

I have had diarrhea when my diet has been sloppy, i.e., too much saturated fat

(think - fried foods, Fritos, etc.), or when consuming milk products in

sufficient quantity (lactose issues). However, even controlling for diet, I've

noticed that when I only get 4-5 hours of

sleep a night, for 3-4 days straight, and am very tired, I'll get diarrhea.

[Guest guest]

I also get acid reflux a lot. No matter what I eat or drink.

Sometimes get a funky mixture taste of different things I've ate

through the day from morning to night. Tastes wierd and sometimes

bad. I also get a lot of nausiousness off and on whether I eat or not. Doc's

can't really figure it out so I figure it must be related to my CMT.

Jane

[Guest guest]

Tube feeding would be necessary if the brain area controlling

digestive function stopped working.

[Guest guest]

Hi, the connection is because scoliosis causes deformation of the spine and the

chest can get crushed. In some cases the rib cage can deform too and then it

causes breathing problems and can affect the stomach and heart to with all the

compression. Its sort of squashes the organs all together.

[Guest guest]

Anti-inflamatory drugs are notorious for causing digestive problems.

Aspirin, ibuprofen, and naprosen are the ones I'm familiar with.

Living with chronic pain, I'd love to be able to take regular aspirin but have

to limit myself to once a day, and only with food. Any more than that and I

start to have stomach problems.

O

[Guest guest]

My older brother suffers with acid reflux. The first couple of times

he had chest pain so bad he thought he was having a heart attack. He

had a cardiac stress test, blood work, etc. which ruled out heart

problems. They ended up diagnosing him with acid reflux. He now only

has problems if he is under a lot of stress. He takes Nexium when

this happens and it resolves the acid reflux. I do think that it is

CMT related. He also has other gastrointestinal issues which I

think are also CMT related. Thankfully, I don't suffer with any of

these problems. So, no, you're not alone.

Holly

[Guest guest]

,

I too suffer from digestive problems. (Also had to have gallbladder

removed). I have curvature of the spine and a hiatal hernia. Acid reflux is

definitely worse when stress is involved. Not sure if it is CMT related, but it

does seem that a lot of us suffer from it.

Teri

[Guest guest]

Has your doctor looked into the possibility of irritable bowel syndrome? I have

that also and it irritates the acid reflux. I have noticed that after the

bowels calm down that the acid reflux improves some. My doctor did tell me that

there was a connection with the two.

Teri

[Guest guest]

Hi Teri,

Well my doctor asked me if i was stressed but I told him that I wasn't

and have been relaxed since I moved back down this way. He did a stool

test to see if there was anything wrong there but that came back

negative. I've been like this for ages now.

Must be about 2 years since I was first ill with the bad pains etc. But since

I've taken note of what the doctor has told me, things have improved somewhat.

But if I have a large meal with my daughter, I pay for it during bed time and my

stomach swells up. I used to get clammy when that happened.

[Guest guest]

I can't say that my digestive issues have anything to do with CMT but they have

definitely been real. Perhaps digestive problems are just so common in the

population that those of us who also suffer from that are among the expected

number of people in any given population to have symptoms.

You may remember the widely believed connection between

autoimmune disorders and silicone breast implants. Turns out upon

careful study that the number of women in the population of people who had

gotten implants and then came down with autoimmune disorders were no more than

what would be expected in the general population of women.

At any rate, I had a hiatal hernia, 20 years of chronic heartburn that was

worsening to the point where I was aspirating gastric acid in my sleep at least

4 times a week. I was becoming sleep deprived, kept comming down with

bronchitis, had to get an inhaler (which I really hated) and finally, after

getting scoped found I had metaplasia in the esophagus (pre-cancerous lesion).

The GI doc gave me Zelnorm and Acifex which made an AMAZING difference. It was

like being normal again and I had forgotten what that felt like. I went away for

the weekend and forgot the meds. Boy was I miserable. I decided I didn't want to

live like that or to keep being dependant on medicine for normalicy.

So, I opted for the elective surgery, Nissen Fundoplication. They pulled the

stomach back to where it belonged, closed up the widened hiatus, wrapped the top

of my stomach with small bowel and tacked it all together. I was back to normal

in a week. Have never had reflux since, can eat what I want. It's wonderful! And

I even lost 10 pounds. My big test was a glass of red wine and pasta with pesto,

just before bed.

Before I would have suffered for days, now I sleep like a baby.

Interestingly, in the workup they found that my lower esophageal

sphincter had no muscle tone at all. The GI doc said that the chronic acid

exposure had damaged the nerves that control the muscle in the area. I can't

help but think that if CMT didn't cause it, it surely didn't help and may have

been why it was so dramatic. I was told that untreated, eventually my entire

esophagus would become denervated which would be very bad as that is how you

swallow. For me, the surgery was a brilliant option that worked like a dream.

Holli

[Guest guest]

Hello,

I would like some opinions about the following:

My mother always complains about digestive problems. Although she has a good diet, no matter what she eats she often feels bloated. She burps a lot and digest very slowly. She eats little and in general her appetite is poor.

I have the idea that the problem may be lack of hydrochloric acid in the stomach.

Any suggestion?

Thanks,

Rena

[Guest guest]

Hi;

I know just what you mean about the gut problem.I hope you know

that a goodpercentage of us are Celiac or have Celiac syndrom.You are

very likely to also have leaky gut and yeast problems from the very

beginning of the disease that has gotten worse with the use of

antibiotics .Have you been religiously taking probiotics? They will not

fix the trouble but will help.You might have to useDiflucan or Sporomax.

Have you read any info on leaky gut? If not go to the Roadback site for

heaps of info Their bulletin board is www.rbfbb.org and you can use the

" search " at the top of the page. This problem is well coverd there

> Hello everyone, it's been a while since I have posted. I was doing

> better but I'm now having digestive problems. I was diagnosed with SD

> back in 2002 and I see Dr. Franco. I have been on minocin and have

> done the Clindy IV's and am now only on oral clindy. My main problems

> are some skin discoloration and red spots on face and a few other areas

> of my body. I also had skin changes around my ankles but that is much

> better. The worse problems I have encountered other than the joint

> pain and very limited flexibility and strength in my legs as well as

> fatique have been problems with swallowing which are now practically

> completely gone and now these digestive problems. I am currently

> getting a pain right under the breast bone area - like where people

> usually get the gallbladder pain. I have already had my gallbladder

> removed. I get very nauseaus and there is no relief until I actually

> throw up several times. This completely drains me and sometimes keeps

> me out of work for several days. My local doctor doesn't really appear

> to know what is going on and I won't be able to go see Dr. Franco until

> this summer. I feel like I'm just not digesting well. This comes and

> goes. I go weeks and weeks without any problems at all and then it

> hits unexpectedly. Any ideas or suggestions? Thank you!!

>

>

[Guest guest]

Hi Onyx (don't know if that's your name)

I had this problem too and after a few of years of digestive problems

it was diagnosed by colonoscopy as diverticulitis, a very common

ailment. The pain is in the lower left of the bowel and can sometimes

be on the right too. It needs dietary management. There's quite a lot

on the internet about it. The anti-inflammatories don't help.

Probiotics are useful for intestinal health but not a cure. I'm

gluten free to control the candida/yeast and take Diflucan and

nystatin as well. Write to me personally if you wish.

Ros