Symptomatic Carrier

wenALD
2 Recommendations

This would be nice if we could support one another and maybe give each other information that might help alleviate some problems.

I have four grown children. My sons, 33 and 28 were diagnosed in 1986. They were early participants in the Lorenzo's Oil protocol.

My older sister is 60, and totally dependent on use of her walker. She is an amazing woman. She has been disabled for more than a decade, but never complains.

I am 58, still a teacher, but use a walker there and whenever I am on my own. I can still get by with my cane and my husband's arm. At home I usually hold on to walls, chairs, or whatever. I know I need to use the cane more and more at home.

I use a variety of medications for neuropathy pain. Now I suffer with cervical stenosis. Falling and hitting my head a number of times, definitely doesn't help. Anyone else suffer from this?

I would love to hear from others.

21 replies

Pio
  • By Pio
  • Posted May 18, 2008 at 10:05 am

thank you for sharing. in the old days, they always said that women showed little if any signs of AMN. but now the reality is much different.
my mom never showed any issues with this disease. but she drank and smoked herself to death at age 65. i feel really blessed to be as healthy as i am. i started using a cane last year around my 43d birthday. i don't use it at home as i touch chairs and tables to get around.
i'm in the study at kennedy krieger now with the oil. i hope that i'm on the placebo because the disease has advanced quite a bit the last few years. but i'm in no pain. my legs don't twitch.
i'm happy to be alive. good luck and God bless.

JAMIESBUSY

Hi, im a carrier and had two sholdren one a carrier asymptomatic and a 12 year old boy with addison's and ald
he is doing remarkibly well.
There are other places as well where you can chat with others and post questions etc...
http;//groups.msn.com/leukodystrophyfamily

there are over 160 family members there with ald, amn addisons etc...
very helpful site.

god bless us all.

jolocny
  • By jolocny
  • Posted May 22, 2008 at 9:26 am

I am so happy to have found this chatroom! Thanks to Janet at ULF for getting me here! I was diagnosed as a symptomatic carrier about 4 years ago and now use forearm crutches most of the time. At home I do more leaning from one surface to another when no-one else is here! It upsets my husband when I do, he's so afraid of my falling. There's no family history at all for me, my daughter tested negative and my son won't be tested (fear does that) but at 29 he's symptom free. None of my brothers or my sister have symptoms. My husband is very supportive, scared to death at the same time. We've only been together 13 years, so I guess "for better or worse" really means something here! Kennedy Kreiger's support has been wonderful, I had a reaction to the study oil and had to stop taking it. I really try to stay positive and work gently with movement, I still work part-time. It's going to help having the support of this community! Blessings ...

KateNDalton

I asked while I was at Kennedy Krieger (while I was out there with my son, Dalton) if there was anything I should do as a carrier. That was in March. There focus was on my son which was what it should be but now I'm wondering if I should ask about being in the study as well. I try to workout every day thinking that maybe if my muscles are strong enough I won't show signs or have symptoms. I love to run and am afraid that I won't be able to do that forever. I try to stick to my son's diet but realize that probably none of the exercise or diet will help me in the end. How do you deal with the unknown?

KateNDalton

How are your sons today?

jolocny
  • By jolocny
  • Posted August 30, 2008 at 1:04 pm

Yes! Ask to be part of the study! I've been working with this for almost 4 years now - all I can share is my experience with you. Please continue to exercise - it'll only help you when (if) you begin to notice symptoms. Why? because you'll know how the muscles felt when they weren't affected. This will help if you need to remember some days how to move yourself forward (or back). Please follow the diet with your son - 1) because it'll be easier if you support each other in it; 2) it's the fats that destroy our myelin, so if you get a jump on that before you get symptoms then you'll be ahead of the game. I know that for a fact - I had a rough patch that included some surgery, a bad fall down stairs, some marital issues, etc. that sent me into a tailspin and I gave up. It wasn't too long afterwards that my symptoms progressed and I'm now trying hard to get myself in control and do what I know is right to help myself - and it's been HARD!! I really can't stress enough that you have to support your health NOW to live better later! All the best to you and your future!

KateNDalton

If you don't mind my asking, what made you decide to get back on track after your tailspin? Do you simply have the "day at a time" mindset? Do you recommend strength training over aerobics?

jolocny
  • By jolocny
  • Posted September 3, 2008 at 8:42 am

Thanks for responding ... each day is new start, and I remind myself of that before I get out of bed now. I'm still working on getting out of the tailspin because I have to get back to eating smarter and doing movement that I know works for me. I finally admitted to myself that the biggest problem was a sneaky depression that I was trying to get by. I try to stay upbeat and move forward ... how could I be depressed? Well, I'm working with that! One day at a time ... I try to find joys that make life good for me. Strength training (did that for over 15 years & I still love it), aerobics (God bless you if you can do that, I had a hard time with coordination) and yoga are all great movements. I had wonderful results from Hanna Somatics - so much that I trained 3 years for certification. It's a movement process that brings your mind back into your movement, helping to bring balance and heightened communication between them. It's helped me to learn to overcome so many of my issues - we take everyday movement (like walking & breathing) for granted - that's just human!
ANY movement is going to help - a good walk helps loads for both breathing and coordination! My opinion (from my history and training) is that alternating whatever movements that I enjoyed throughout my week brought me great results! Do what brings you joyous results and switch back and forth so that you cover your basic needs, and push gently to be your best self. 'nuf said ... I'm going to practice what I preach right now! Much love to you! ... and a big hug!!

KateNDalton

Thank you for your insight. I love to run but am finding that my hips and joints ache almost constantly now so I'm trying not to do that anymore. I've scheduled an appointment with my doctor and am going to have him check it out. I talked to KKI about it but they don't feel that it is a symptom of being a carrier since I'm 27. I think it is but I'm not the doctor so I'll go have my local one here in Indiana check it out tomorrow. I also have high cholesterol so I'm going to see if I can get on Lovastatin since I've read that it can help lower C26 levels. Have you heard of that? Hugs to you too and I love the idea of yoga. I'm terrible at balancing though so I may have to stick with strength training for now. My cousin says he takes things one step at a time now instead of a day at a time because each step he takes is so difficult for him. He's seems very positive about it now. He's only been symptomatic the last two years. How long have you been showing symptoms?

jolocny
  • By jolocny
  • Posted September 3, 2008 at 5:47 pm

My symptoms came on pretty strong 4 years ago ~ the result of tremendous stress on the job. I've since retired from that career and entered another! I hate to bring this up ... I'd had multiple surgeries to stabilize my ankles prior to finding out that I had AMN. Once I informed the surgeons, they told me they wouldn't do anything more. Seems that the joints weren't supported as they should've been by the muscles (becoming slack due to messaging problems). I just mention it because it would've made a difference for me. how about walking, instead? (having kids that are runners, I know that isn't much of an option!) I hadn't heard of the Lovastatin affecting C26, but if it would help your cholesterol AND C26 levels ... that's up to you and your doc. There are different types of yoga (100's, I think). How about looking around and seeing what's available? I know that most of the sessions build to the next, you may find that your balance improves! I had a wonderful teacher who worked with me if I had troubles with balance - good luck! Big hug for your cousin! Sometimes it takes a step at a time, each one can be different from the one before. He's got it right, tho, it's not always easy to remain positive but it makes all the difference. My Mom recently told me that I make it seem effortless so much of the time, how would anyone know that I'm having trouble? My response was that it's never effortless, sometimes it's all-consuming, but the positive attitude can save my day, my minute ... and often my ego! Silly, yup, but I'm still pretty stubborn about doing as much as I can for myself. I do share more with others if I'm having a tough time of it now ... I have to or I get too exhausted and my body shuts me down! I'm working it smarter now that I understand that! HA! All the best to you, seek medical help (bec. sometimes the docs don't have a clue about ALD/AMN, please inform them!) and don't let them dismiss your concerns. [[Sorry for the long response!]]

KateNDalton

Great Response! I go and see my doctor later this morning and this is exactly what i needed to hear before going to see him. I was debating on whether I should tell the doctor I want the Lovastatin just for the high cholesterol or if I should mention the minor detail of it lowering C26 levels (which is the real reason I want it! I figure he won't understand and will dismiss it. That's my fear. The Mayo clinic is doing the study on the Lovastatin. You can have your doctor put you in the study for $250.00. At this point I'm not opposed to being in the study but if there is even a less than 1% chance that it can help, I want to be on the medicine NOW! I'm trying to switch over to walking. I love the idea of yoga but my balance is so terrible that I give up rather easily. Maybe I need to just get a beginner's video and see if that helps. I'm also going to look up Hanna Somatics and see what i can find. Hugs to you and have a blessed day!

Emcee70
  • By Emcee70
  • Posted September 9, 2008 at 4:50 pm

I have to mention that I'm truly loving the Wii Fit "video game". It has balance games, like slalom skiing, heading soccer balls, putting balls into holes, etc., as well as strength training and yoga. You do everything on the Wii balance board, which is like a large bathroom scale. Granted, you have to be able to stand on the board to do the activities. As you work, you get points, which unlock more activities.

I'm on Social Security Disability for my AMN, but also because I get migraines and am dealing with depression. I only get $1050 per month, but living with my boyfriend and splitting expenses, we do okay. I mention this only to put the thought out there that it can be done.

Joann, you and I met at the ULF conference this past July. My mom and sister were also there. (I'm the littler, quieter one, Margaret.) I hope you're doing okay. Sometimes when I pass by my forearm crutches and don't need them, I think of you. :-)

I'm on gabapentin for my migraines, but found the side effect of greater muscle control in my legs. I walk like a robot without it. And I'm also on amytriptaline for depression, which helps with my neuropathy, and depakote for my migraines, which helps with my neuropathy and also my back. I'm in a good place physically (and emotionally) now.

FBMOM1
  • By FBMOM1
  • Posted November 16, 2008 at 9:01 pm

I was just confirmed to have ALD X-linked from my blood test. The last 2 weeks have been the most stressfull of my life because we were waiting for my grandsons test to come back. GOD BLESSED ME with negative results for the boys. We will now see who are female carries are and go forward. Now I can think about my situration. I feel so lucky that I did not have sons effected by this horrible disease. I have symptoms and that what lead us to the findings. I was confirmed to have MG about 1 year ago. The nuerologist were all saying all the puzzle pieces were not fitting and they were ready to give me a MS diagnosis since that fit most of my problems. I have not started any treatmet yet, this is such a rare disorder that I am not sure they know what to do. I have balance problems, horrible pain in my legs at night, incontinance problems and involutary muscle movements all the time. I would apprecitate any insight about middle age women with symptoms

coco1252
  • By coco1252
  • Posted November 17, 2008 at 6:19 am

I would suggest contacting Kim Hollandsworth at Kennedy Krieger Institute in Baltimore MD. She has been great with me and my family for the past 16 years. Her email is hollandsworth@kennedykrieger.org. They are working on different testing and treatments for ALD/AMN. Between her and Dr. Raymond they are awesome. You may also feel free to contact me at coco1252@aol.com if you would like. I don't have a lot of symptoms but I had one son pass away and have another who is asymptomatic at present with adrenal insufficiency.

KateNDalton

I contacted Kim yesterday because my legs are really bothering me and they seem to be progressing for the worse. It's only been a year. I'm wondering if its just because I took Lovastatin but I've been off of it for over a month now and I'm having severe hip and thigh cramps. I feel also like I have Restless Leg Syndrome. Kim sent me all the info but did not mention my being in a study. She mentioned getting PT, exercising and taking Neurontin and other drugs that might help. Any medicines out there that has worked for carriers with aches?

wenALD
  • By wenALD
  • Posted November 20, 2008 at 10:38 am

I take a combination of Baclofen, Tegretol, and just recently cut out Neurontin. This combo has made all the difference in the world. When I don't take the meds, because I've left them at home and gone to work or something, I find it very difficult to walk. With them I am in pretty good shape without leg pain. My balance is still not too good, but that I can deal with. It took me years before this combo was put together. You might mention it to your doctor. I take the pills three times a day.

britt_carrier

Kate -

Kim probably didn't mention the study to you because the study has been put on hold for now. No new participants. She said she would let me know when it reopens to new participants. In the meantime, make sure you do some PT to keep yourself active. I am also on Neurontin 300mg three times a day and baclofen 10 mg three times a day and Elavil 50mg at night to help with pain/sleep.

KateNDalton

Thank you wenALD. I'll let my doctor know right away. I don't think it's healthy for me to be taking so much Ibuprofen. Also, I'm looking into a health website that I have no idea if it will help or not but it couldn't hurt. It's called Juice Plus+. www.ktwellnesslady.com has all sorts of research on it and she thinks it might help with symptoms. I haven't tried it yet but I'm going to soon because any chance of it helping with aches and pains, I'll take! I'll definitely call my doctor about the other drugs you take. I'm wondering if it's just from sitting at my desk all day long but I use a stationary bike in the mornings for 20 minutes or so so it's not like I'm not getting any exercise. This disease just baffles me because I can't "get it right." Argh! That's okay though because we have each other and there are lots of researchers out there who are going to figure this out (I pray). Blessings to all of you and have a happy weekend!

Bunch
  • By Bunch
  • Posted November 22, 2008 at 11:02 am

Generally I always have thought my symptoms were arthritis related. Now I"m wondering if they could be ALD carrier related. I do do a lot of biking and other excercise and that has really "cured" -for now anyway-a left leg/hip issue.It also has improved my balance. My on-going problem is with my shoulders. Has anyone ever heard of ALD and frozen shoulder issues?

marshallsaunt

Hello Bunch Like you I've always thought my problems were arthritis related maybe because I was diagnosed with Fibromyalgia and rhuematoid arthrits in 2001. Ive been through every treatment there is for it and nothing has ever helped. September 5 my nephew was diagnosed with x ald. He is at Duke University right now after having a bone marrow transplant Nov 7th. Anyway I've been told to be checked to see if im a carrier. I have not had the test yet but cant wait to do so. I have been in pain had problems with clumseyness, numbness in feet legs and lower back, and urinary problems which I figured was from having my kids. I also have had stiffness and pain in my shoulders. After reading all the symptoms of female carriers Im beginning to wonder if I've been misdiagnosed. This surely makes alot of sense to me that maybe i've been treated with the wrong meds thats why their not working. My shoulders are in bad shape and i've wondered also if it could be the ald. Hopefully soon I will find out. I plan to see my dr in December for a physical and have the test done.

Add to the discussion

New user? Join here.
Forgot password?
Keep me signed in on this computer until I sign out

Search

Find information and discussion about health topics in 304,356 posts by members like yourself. Learn more...

Join

Join safe, secure groups sponsored by trusted organizations that care about your health. Learn more...

Connect

Connect with 80,778 members and make friends who share your interests, learn about conditions and treatments, find support and more. Learn more...

You