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lojobarn Message
3 Nov 2008, 05:55 AM

I just thought i would see if anybodyhas been prescribed lovastatin to lower the vlcfa.
SallyBuckner Message
23 Nov 2008, 02:10 PM

I used lovastatin about 10 years ago and had what I termed a miraculous improvement in mobility. It lasted for several months; when my condition began to deteriorate, I went off lovastatin, but just last week started it again, hoping of course for repeated improvement. Feb. 10: Since my message 3 months ago (see above), I have continued lovastatin and I do see a difference in walking though not in balance. I can't say whether lovastatin is responsible because I am diligently trying new and more exercise. Furthermore, the newest United Leukodystrophy Foundation newsletter includes the following report: Marc Engelen, PhD (Academic Medical Center, Amsterdam) performed a clinical trial to determine whether Lovastatin was effective in lowering C26:0 levels in AMN patients. Using a placebo-controlled, randomized, crossover design, he treated 14 patients with Lovastatin or placebo for 6 months. LDL-cholesterol decreased 60% on Lovatatin as expected and plasma C26:0 decreased by 30%, but lymphocytes showed no change. The C26:0 content of plasma LDL-cholesterol also showed no change when normalized to LDL concentration, which suggests that the plasma C26:0 reduction on Lovastatin was a secondary effect of decreased LDL. Since lymphocytes did not exhibit a reduction in C26:0 on Lovistatin, the drug probably has no effect on tissue levels of this fatty acid. He concludes that Lovastatin has no biochemical benefit for AMN patients.
meagan Message
25 Feb 2009, 04:23 PM

can i ask if you have ANM?
SallyBuckner Message
26 Feb 2009, 12:53 PM

Yes, I have AMN--though as a woman I am sometimes referred to as a "carrier." The effect on my mobility is much more than a "carrier," however. SB
brittcarrier Message
26 Feb 2009, 01:13 PM

Sally - When you say "the effect on your mobility is much more than a carrier" what do you mean by that? I am also an AMN "carrier" and use forearm crutches and a wheelchair to get around. I cannot drive as the feeling in my feet is so bad. I mostly just sit back and read the posts but I would like to know what your current status is and what meds you are currently taking. BC
deosee Message
10 Mar 2009, 12:55 PM

Hi BC I also use a forearm crutch and a wheelchair, but I have been driving to work everyday for the last two years. I installed hand controls in my car. If you are able please consider doing the same so you wouldn't be stuck at home or dependant on others to get you around. Deo- male amn 46 years
SallyBuckner Message
11 Mar 2009, 01:50 PM

To BC: We think of "carrriers" as merely passing along the condition with no effects (or minor ones) on their own health. When mobility problems necessitate using cane, walker, or wheelchair or the individual ha incontinence or other effects, that person is a patient or victim or sufferer (choose your own noun), not merely a carrier. SB
brittcarrier Message
12 Mar 2009, 12:59 PM

SB - Okay then, I guess I am not just a carrier either. What is your current condition? I gave you a little bit of a backround on mine. I had a rough night last night. I had muscle spasms all night. Took both the baclophen and neurontin. Neither seems to have helped. I am curious to know what others are taking or what is helping. Deo - Thank you for the advice. Where I live, it's not as easy as just putting hand controls in your car. It's $1000. to put the hand controls in and another $1000. to go to school to be able to drive with them. Then another $60. for a new license. I haven't worked since May 2008 so all of this seems like a lot. I will work up to it one thing at a time. Thank you, Britt
deosee Message
13 Mar 2009, 04:36 PM

Hi Britt, I absolutely understand. Hope I didn't sound pushy. I started new meds this week- crestor and amitriptyline. Does anyone have any experience using amitriptyline for chronic pain. Regular pain killers do not seem to work anymore. Deo
brittcarrier Message
13 Mar 2009, 05:04 PM

Hi Deo - You didn't offend me. I really want to get some wheels and get out. I completely understand. Was it as hard for you to drive with the controls? So many rules, so much money. As for the amitriptyline, I am on 50mg a night before bed. I don't see that it helps with the pain too much. It helps with depression a bit. It doesn't put me to sleep but makes it hard to wake up in the morning. I'm also taking neurontin and baclofen. I am going to have to stop the neurontin as there are too many side effects with me. How much did they put you on?
deosee Message
16 Mar 2009, 06:10 PM

Hi Britt, I imported Jeff Gosling hand controls with a steering ball from the UK. Its a push to brake, pull to acclerate type and very easy to use. It passed inspection by local authorities-I had to put a "no hand signal sign" at back. I use 25mg amitryptyline at night but so far no pain relief only drowsiness. I needed a med which will keep me pain free while I work out. Pain seem to be the limiting factor on how much exercise I can do. I have really bad left knee pain and still recovering from core decompression surgery for avascular necrosis as a result of using steriods for addision's. I have now found a supplier for hydrocortisone and had been using prednisolone for the last year. Take care. Deo
brittcarrier Message
17 Mar 2009, 11:25 AM

Hi Deo - Thanks for the information on the hand controls. It's always good to see what others are doing. I don't find a lot that keeps the pain down either. The amitryptyline doesn't really keep the pain down for me. It doesn't make me tired at night either. I just can't wake up in the morning. My left knee is really bad too. I think it may be time for me to go see an ortho for a brace of some kind but I keep trying to push that off. Prednisone can do a number on your body. My dad took it for years. It did help him a lot though. He would go through times where he was really sick from the Addisons. I wish I could let you know that something takes away the pain for me but honestly, it does. Keep in Touch! Warm wishes
deosee Message
18 Mar 2009, 08:38 PM

Hi Britt, It would be nice to keep in touch. Email me at My wife has lots of photos of us and the dogs in her facebook account that we would love for you to browse. Deo
SallyBuckner Message
19 Mar 2009, 11:26 PM

To Britt: Sorry to take so long in answering, but I'm having trouble with a weak back and physical therapy is consuming much of my time. I began using a cane about a dozen years ago, use either a walker or a wheelchair now (usual a power chair; I don't have enough upper body strength to manage a mechanical chair except on straight, smooth surfaces. Until this back trouble, which I realize began several years ago but didn't seriously affect my walking until recently, I had few effects other than mobility problems. Sometimes at night my legs jump. Diazepam (valium, 2 mg.) usually handles the problem; so does tonic water, which contains quinine, and is very helpful.
brittcarrier Message
1 Apr 2009, 09:55 PM

Hi Sally - I am sorry to hear that you aren't getting around too good. I know it's hard. Do you have family members to help you out at all? Are you able to follow the physical therapy. I know when I go I can't move for days later. Let me know how you are doing? Warm wishes