Carriers

Replies to This Discussion

Permalink Reply by nancy coleman on December 6, 2009 at 10:36am

I am a carrier. My son is asymptomatic. I have some pain and other issues, but it could always be worse. Plus I am one of the americanss that has never had health insurance. I try to keep myself healthy.
Feel free to email me any questions.
Have a great day.
Nancy

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ModeratorPermalink Reply by Tracey Stuart on December 6, 2009 at 3:39pm

A couple of years of years ago I started having a lot of pain everywhere. I just thought it was my job, I am a barber on the base so I'm on my feet a lot. I had to stop working last March to take care of my son. Since then the pain has gotten worse and I am having a lot of trouble walking some days. I will be getting a MRI when I can get an appointment. Do you know anything about the progression of carriers? The genetics doc that treats my son didn't have much info for me, he just said to wait for the MRI.

nancy coleman said:

I am a carrier. My son is asymptomatic. I have some pain and other issues, but it could always be worse. Plus I am one of the americanss that has never had health insurance. I try to keep myself healthy.
Feel free to email me any questions.
Have a great day.
Nancy

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Permalink Reply by Bill Groel on January 30, 2010 at 8:58am

Hi. Any new news? My wife is a carrier and her mother as well. My mother in law, now in her 60's has some carrier symptoms. She's had what she calls jumpy legs from time to time, but now she has very little feeling in her legs. She's still able to walk although she's become a little unstable over the years and chooses to use a walker or a cart for long distances. She has some other mild carrier symptoms as well. Are you finding any support information?

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ModeratorPermalink Reply by Tracey Stuart on February 1, 2010 at 5:44pm

Hi Bill. There is not a lot of information anywhere on carriers. Zack and I both see genetics next week. I have an appointment to get a MRI and a visit with a neurologist but not till june. In the meantime my legs are very sore and heavy. I wonder if your wife or mother in law have any suggestions how to manage the pain.

Bill Groel said:

Hi. Any new news? My wife is a carrier and her mother as well. My mother in law, now in her 60's has some carrier symptoms. She's had what she calls jumpy legs from time to time, but now she has very little feeling in her legs. She's still able to walk although she's become a little unstable over the years and chooses to use a walker or a cart for long distances. She has some other mild carrier symptoms as well. Are you finding any support information?

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Permalink Reply by Bill Groel on February 6, 2010 at 8:09am

Your right, there's not a whole lot going on for carriers in the medical community. There was a carrier study a few years back but it was stopped to make some correction in what they were doing. As for the MRI, I'd be surprised if the results weren't very good. From what I know, I think its very rare that carriers see any demyelination. Most of what I know about carriers is that they have a varying degree of physical symptoms... some with minor leg trouble and others over time progress towards mild AMN symptoms (trouble walking and other physical limitations). My Mother in law is in the latter category... she walks about the house but uses a cart otherwise. Her legs tend to keep her up some nights and she has some bowel issues. She's been to neurologists and others like Dr. Moser before he passed and has tried some medications. Unfortunately, I don't think she's found anything that helps without some other side effect. My wife, now turning 35 has a lot of restlessness in her legs from time to time... so I fear she will progress over the years like her mom. With that said, check out the information on AMN. There are a lot of suggestions out there for the kinds of things you are dealing with are more relative to AMN than ALD.

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ModeratorPermalink Reply by Tracey Stuart on February 20, 2010 at 12:02pm

Thanks for your reply Bill. This info helps a bit. I'm going to keep looking now that I know where to look until I see neuro in June.
Tracey

Bill Groel said:

Your right, there's not a whole lot going on for carriers in the medical community. There was a carrier study a few years back but it was stopped to make some correction in what they were doing. As for the MRI, I'd be surprised if the results weren't very good. From what I know, I think its very rare that carriers see any demyelination. Most of what I know about carriers is that they have a varying degree of physical symptoms... some with minor leg trouble and others over time progress towards mild AMN symptoms (trouble walking and other physical limitations). My Mother in law is in the latter category... she walks about the house but uses a cart otherwise. Her legs tend to keep her up some nights and she has some bowel issues. She's been to neurologists and others like Dr. Moser before he passed and has tried some medications. Unfortunately, I don't think she's found anything that helps without some other side effect. My wife, now turning 35 has a lot of restlessness in her legs from time to time... so I fear she will progress over the years like her mom. With that said, check out the information on AMN. There are a lot of suggestions out there for the kinds of things you are dealing with are more relative to AMN than ALD.

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Permalink Reply by Charity Bensley on March 19, 2010 at 9:42pm

Tracey,

Once Jacob was diagnosed, my mother and myself got tested for the disease. We found out that not only are we carriers but we HAVE it. We have the AMN form. Both of us have high VLCFA's like in the boys. We were told that we would only show it in our DNA and that is not the case. We are not sure that there are any others out there. I had an MRI done of my spine a few years ago, before Jake got sick, and they have already started to see a deterioration. Unfortunately they had no idea what it was associated with. My mother also has the same problem. We both have terrible back pain, and take lyrica which works like a wonder-drug. It is a nerve blocker which stops the pain signals in the spine. I have not had a brain MRI done as yet but her brain MRI was normal. My daughter, Jeanette, as you know is 4. We have just recently petitioned NYS to have her tested as well. They have already denied her saying that they will not test until she is of child-bearing age, but we are hoping that because my mother and myself are positive for the disease that they will reconsider. I know in our case we were shocked to find out that all the info out there states that we can only carry the disease but not have it. I am finding out more and more that that information is not true. When I talked to KKI they said that they are finding out the same information, that although most of the mother's VLCFA's were not high, that they coudl exhibit the same symptoms as AMN. I would wait and see what your test shows and just fight to have the girls tested. Better to know early than to wait, that is how I feel anyway.

Charity

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Permalink Reply by Margaret Caldwell on April 2, 2010 at 3:41pm

I'm an ALD mom and AMN patient, daughter of another AMN patient, and a sister to another AMN patient (my sister). The MRI won't show any demyelination. Your best bet is to try to prevent symptoms from appearing in the first place. KTC mustard oil, 1cc per kilo of weight (weight divided by 2.2), plus a low-fat diet (like 17 grams of fat per day) is the best you can do right now. The low-fat diet by itself will not work for decreasing the Very Long Chain Fatty Acids that attack the myelin sheaths around the nerve cells. Also, supplements: alpha lipoic acid, L-carnitine, Co-Enzyme Q-10, vitamin D3, and a good multi-vitamin. The only way you'll know if you have AMN is to compare your symptoms to other AMN patients. Like I have horrible balance (better after being on the supplements), numb feet, low back pain that sometimes shoots into my legs, toe pain, stiffness, wobbly legs. If I'm off my supplements for even 2 days, I'm sleepy and can't walk straight.

I hope this helps.

Margaret

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Permalink Reply by Scott Orn on April 3, 2010 at 12:09am

What can we do to change the "not a whole lot going on for carriers in the medical community" ?

Tracey Stuart said:

Thanks for your reply Bill. This info helps a bit. I'm going to keep looking now that I know where to look until I see neuro in June.
Tracey

Bill Groel said:

Your right, there's not a whole lot going on for carriers in the medical community. There was a carrier study a few years back but it was stopped to make some correction in what they were doing. As for the MRI, I'd be surprised if the results weren't very good. From what I know, I think its very rare that carriers see any demyelination. Most of what I know about carriers is that they have a varying degree of physical symptoms... some with minor leg trouble and others over time progress towards mild AMN symptoms (trouble walking and other physical limitations). My Mother in law is in the latter category... she walks about the house but uses a cart otherwise. Her legs tend to keep her up some nights and she has some bowel issues. She's been to neurologists and others like Dr. Moser before he passed and has tried some medications. Unfortunately, I don't think she's found anything that helps without some other side effect. My wife, now turning 35 has a lot of restlessness in her legs from time to time... so I fear she will progress over the years like her mom. With that said, check out the information on AMN. There are a lot of suggestions out there for the kinds of things you are dealing with are more relative to AMN than ALD.

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Permalink Reply by Charity Bensley on April 3, 2010 at 12:50pm

Scott,
If she is not already on it, lyrica seems to do wonders. My mother is in the later category and uses it twice a day. Does not inhibit use of the legs but it takes the pain to a manageable level, if not completely gone. My mother is going to be fitted for a car that uses hand controls as she has lost almost all the feeling in her right leg. I will be seeing the neuro in 2 weeks. Will try and update with what I find out.

Scott Orn said:

What can we do to change the "not a whole lot going on for carriers in the medical community" ?

Tracey Stuart said:

Thanks for your reply Bill. This info helps a bit. I'm going to keep looking now that I know where to look until I see neuro in June.
Tracey

Bill Groel said:

Your right, there's not a whole lot going on for carriers in the medical community. There was a carrier study a few years back but it was stopped to make some correction in what they were doing. As for the MRI, I'd be surprised if the results weren't very good. From what I know, I think its very rare that carriers see any demyelination. Most of what I know about carriers is that they have a varying degree of physical symptoms... some with minor leg trouble and others over time progress towards mild AMN symptoms (trouble walking and other physical limitations). My Mother in law is in the latter category... she walks about the house but uses a cart otherwise. Her legs tend to keep her up some nights and she has some bowel issues. She's been to neurologists and others like Dr. Moser before he passed and has tried some medications. Unfortunately, I don't think she's found anything that helps without some other side effect. My wife, now turning 35 has a lot of restlessness in her legs from time to time... so I fear she will progress over the years like her mom. With that said, check out the information on AMN. There are a lot of suggestions out there for the kinds of things you are dealing with are more relative to AMN than ALD.

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Permalink Reply by Margaret Caldwell on April 3, 2010 at 6:14pm

Education, education, education!! Janis with FightALD has been getting out to medical facilities across the country to get information out to the medical community. Other than that, it's up to sites like this one where people can share their stories and what works for them.

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ModeratorPermalink Reply by Tracey Stuart on April 4, 2010 at 9:20pm

Thanks for the info Charity and Margaret. Compared to the 2 of you I do have symptoms. I had a full body MRI yesterday. I have an appointment with Genetics on April 12 to test my VLCFAs. Are the supplements something you got off the shelf at the drug store or were they prescriptions? Did your doctor recomend them or was it trial and error? I actually had to push Genetics for these tests and I plan to go "armed" for my appointment. I kinda felt the doc was not taking me seriously.

Tracey

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