REALLY long bio..

[tracietodd]

Wasn't sure if there was a character limit on posts, so I have a REALLY long bio. If anyone has lots of spare time, needs to kill time, fall asleep, lol please feel free to read it. I'm just looking for thoughts and suggestions. Thanks!

[KazzyALD]

Hi tracierodd, I have just read your bio, and I too have the same problem. It does seem Drs are only interested in their particular field, although sometimes I get the feeling it's because they no nothing about ALD/AMN, and they don't want to admit it. I have come across many over the years. I have Rheumatoid Arthritis, and I was told about 9 years ago I had mild nerve damage in my legs, due to AMN. I already knew I was a carrier, as my son had been diagnosed many years earlier.

I see a Dr for my RA, but I don't see anyone for AMN. I'm in the UK, and I know the best Dr for AMN is in London, which is only about 80 miles away from me, but I have not bothered getting a referral. My Dr for RA has been pleased with my bloods showing my inflammatory readings, but when I said why am I still in so much pain with my back and legs, she just said, 'Oh that'll be the damage already been done'. It's only been through my own research, that I've started to think that what I'm going through is not my RA, but AMN. I am also having a few problems with my bladder and bowel at the moment, so that is being investigated at the moment.

I'm now medically retired from the Civil Service. I'm 47. I could no longer carry on working, as the pain with both conditions have become too much.

So what you're describing does seem to mirror what is happening with me, but as for finding a Dr who is all singing all dancing, I'm afraid I don't think they exist, either side of the pond.

This site is always so helpful, and the people are so nice and friendly. At least we have somewhere to share our thoughts and worries.

Sorry that I have to real answers for you. Karen xx

[jolocny Volunteer in reply to KazzyALD]

Hi Traci!

LOL - got a kick out of reading your bio! Keep up the humor as you can, it'll make all the difference!

Your bio may have double posted?

I just got back from Kennedy Krieger Institute @ Johns Hopkins in Baltimore. I have a local Neuro but decided that it was worth seeing the folks at KKI for follow-up annual care. I started with them in an adult Lorenzo's Oil study mid 2000's. Dr. Ali Fatemi is now leading the ALD/AMN group there. There are also docs at the University of Minnesota and Boston's Massachusetts General that are fantastic. Also, look-up the United Leukodystrophy Foundation [ulf.org] - they are very supportive and hold an annual conference for all ALD/AMN people/families. This takes place in various cities in the US. This year it's in Minneapolis, I think. Docs from all over the world meet for a Medical Conference for a day or 2 before it's opened to 'us'. We have contact with any/all of the docs over a 2 day conference where we get the latest information and research on ALD/AMN. PLUS we get to be together with other ALD/AMN people!

The person to contact at KKI would be Kim Hollandsworth [[e-mail]]. She can also be really helpful in getting you tested.

I have no family history, but am very symptomatic. In a wheelchair most of the time now. I have no pain but plenty of other symptoms. I've been told that I don't have pain because the myelin's gone on my nerves.

You've found a terrific place to get answers from people that are experiencing AMN! Keep in touch!

[tracietodd in reply to jolocny]

Thanks for so much info, and especially for letting me know about that messy, crazy double post! Thanks for not pointing out typos, too, lol!

[jolocny Volunteer in reply to tracietodd]

Love your sense of humor! No, I can't point out typos ... I'm guilty of those, too! I should buy stock in spellcheck!! Lol!

[Cherie in reply to KazzyALD]

Hi Karen

I was wondering where you lived in the UK.

Cherie

[KazzyALD in reply to Cherie]

Hi Cherie. I live in Portsmouth x

[Cherie in reply to KazzyALD]

I live in Ferndown. X

[Slgrooms in reply to KazzyALD]

Karen,

My father has AMN and it has now affected his brain. I am 40 and in great health. I exercise many days a week. I have heard exercise helps. I am also seeing my dad's neurologist once a year now. I have no symptoms yet. When did you start feeling pain? Love to hear your comments as well.

Stacy

[KazzyALD in reply to Slgrooms]

Hi Stacy. The continued back and leg pain has only been about 2 years, but I have been experiencing pain since my late 20's, that is probably just down to my Rheumatoid Arthritis though. My bladder and bowel issues have been for about a year. Exercise is always good for anyone, but obviously it cannot stop any progression of the disease, as I'm sure you already know.

Karen x

[bluejadedwho]

Hello,

I am curious to discuss further the symptoms of female carriers. I was also under the impression that females did not get any symptoms as they had the extra X Chromosone to compensate for the mutation on the other X.

I am concerned, as I have a daughter. I have been researching, and connecting with progessionals over the past 12 years. I am confident that I am close to understanding the disease process and what we can do to support if not stop the progression.

Some of this information is from some of the Spanish studies that have recently been completed that discuss the role of TUDCA, Citicoline, NAC, Alpha-Lipoic Acid and Vitamin E.

It is very premature and have only been tested in mice-models. I am not willing to wait for them to create a synthetic version of these nutrients so they can profit.

I am a holistic nutritionist, and all this is something that interests me greatly. Even more of course after I received the diagnosis of adrenomyeloneuropathy 12 + years ago.

I would love to discuss with anyone if they are interested. Please private message me, and perhaps we can exchange contact information.

All the best,

Patrick

[SDAffirm]

Hi Tracie - I'm 50 years old and have experienced episodes of severe pain in my lower back and legs for 2 years from AMN. What helps me: 1. Energy Management - do what's priority first and let what isn't go. 2. Eating the best I can - lots of vegetables and fruits 3. take anti-oxidants a. NAC - N-Acetyl-L-Cysteine b. Alpha Lipoic Acid c. Resveratrol 3. Walk and stretch - I use Leki poles to walk about 2 miles about 3X a week and stretch afterwards or take a bath with epson salt. I used to do gyrotonic which really helped stretch out the back but it's too expensive of a training, so now I just have a "super band" to help stretch my stiff muscles. 4. Capsaicin cream for my lower back and Lidocaine for my feet and legs.

Kennedy Krieger is where my sister goes as she lives in NJ and Baltimore isn't too far but they also have an exercise regime they came up with just for AMN patients.

I go to a local neurologist and plan to go 2x a year. I also go to a local naturopathic clinic.

The clinic is all students and I have to remind myself to have patience with them since they can come off as a bit arrogant, and they really don't know much about AMN.

My biggest fear is having cerebral involvement, even though thus far it's not been reported in women. That's how my brother was finally diagnosed by a doctor because he had dementia at age 50 and died when he was 52.

-Liz

[Aaron98 in reply to SDAffirm]

Thanks for sharing, Liz. Your words about energy management are so true. Whether the tasks are physically or mentally fatiguing, it is always best to tackle them early in the day before we get worn down.

Have NAC, APA, and Resveratrol helped your neuropathic pain, or have you had other noticeable benefits?

[SDAffirm in reply to Aaron98]

They have reduced nerve pain but I seem to easily bruise now which I will have to inquire with my physician about. It's all very frustrating, managing AMN but I keep trying. I recently saw some quotes for cancer patients and the one that stuck with me was something like some people beat it, others don't and you don't know which one you are.

[tracietodd in reply to SDAffirm]

Thanks for sharing Liz. I go back and forth between not getting on this site (helps it to not seem real) and then getting on to see what other people are experiencing if I have a new or worsening symptom. Right now my hip and tops of thighs, as well as knee pain and worsening fatigue are really upsetting. I'm frustrated that doctors around here don't know or understand AMN and I don't have the money to go to Kennedy Kreiger or someplace that can do proper tests and provide factual answers. I will add some NAC and alpha lipoic acid -I have heard that suggestion a few times now. Hopefully. That will help! Thanks again. Tracie