ALD in 1986 and AMN 2018

[AMNBrazil]

My name is Rodrigo, a Brazilian with 44 years. I was diagnodes with a milder ALD phenotype in 1986, after my younger brother diagnose of child ALD. Since then, it was clear the Addison Disease and the spine issues. In February 2018 I was diagnosed AMN and now I have a clear understanding regarding walking, balance, spams, bladder and other symptoms.

[Aaron98]

Thank you for sharing, Rodrigo. Welcome to the group! Your symptoms definitely sound like classic AMN. These are the symptoms that most of us share. Are you receiving adequate treatment for these symptoms? Again, welcome.

[AMNBrazil in reply to Aaron98]

Dear Aaron,

Sorry for taking so long to get back to your kind message.

After my formal diagnose, in February 2018, I started to take vitamin B and now, after a new neurologist visit, I started a Vitamin D 100,000 units per day. It is an alternative protocol and I decided to try.

Moreover, I will visit the Kennedy Krieger Institute un June 2019. I do imagine they are the most important center for research and knowledge about Leukodystrophies.

I do have a good life, despite the walking and balance constraints.

Let me know if I can help in any way.

Kind regards

[COwithAMN Administrator AMN EASIER Volunteer]

Hello Rodrigo

I am glad that you were able to find AMN Easier and to join. I can relate to your situation a bit because I was in my early '40s when I was also diagnosed with AMN. That was about 35 years ago, so I like to say that I am living proof that you can have AMN for a long time and still have a productive and satisfying life.

Do let us all know what help we can provide. Everyone experiences AMN a bit differently, so the great benefit of a large group of patients is that we can share what works for each of us so new AMN-ers can benefit.

Chris (COwithAMN)

[AMNBrazil in reply to COwithAMN]

Dear Chris,

Sorry for taking so long to get back to your kind message.

It was really inspiring and conforting to recieve your kind words.

It is really good to hear that you have a nice life and manage the AMN well!

My AMN diagnose happened in February 2018, after some 2 years searching for a possible spine surgery due to my hernias. Actually, I had visited a geneticist in 2006 and he asked some exams; but I did not finished the exams that just now I realized it was related to AMN.

I was never a great "walker", but since 2014 I started to have more dificulties to walk and specially gait issues. I have pain and numbness, but day by day as I learned.

I found a neurologist that adopts a Protocol based on high vitamin D intake, around 100,000 units per day. It is an alternative protocol and I decided to try.

It requires a restriction to some food, like milk and dairy products, and some other food as well.

The other issue that bothers me is that due to the muscle issues, I have bowel and bladder issues. It is really hard going to the toilet. I will try to visit a physiotherapist searching for some possible excercises.

I will have an appointment with a nutritionist to search for possible restrictions related to food, considering that the intake of VLCFAs should be reduced. I will let you know when I have news about it.

Moreover, I will visit the Kennedy Krieger Institute in June 2019. I do imagine they are the most important center for research and knowledge about Leukodystrophies.

It is really a pleasure to be in contact and to share experiences. I do believe that this is an amazing opporunity to learn from each other daily experiences.

I was in London past July, if I have the chance to come back I will let you know. It will be a pleasure to invite you for a nice lunch.

Please let me know if I can help in any way.

Kind regards

Rodrigo

[COwithAMN Administrator AMN EASIER Volunteer in reply to AMNBrazil]

Dear Rodrigo

Glad my words were of some help. It's good that you are trying to find things that will help you. I am not sure about taking excessive amounts of anything is a good idea. The trouble is, overdosing may cause the body to react or may even harm something. Or of course, it may just get flushed down the toilet. 100,000 units of vitamin D sounds a lot. I take a vitamin D supplement but only to make good my lack of exposure to sunshine - something you should not have a problem with!




I would not waste any time trying to use diet to reduce your VLCFA intake. The problem is the blood-brain barrier. The blood-brain barrier is nature's way of stopping pathogens and bacteria from getting into the brain. It treats VLCFA molecules the same way. So reducing VLCFA in the blood won't permeate into the nervous system which is where it is needed.




This was the problem with Lorenzo's Oil which does reduce VLCFAs in the blood but doesn't stop AMN except possibly in presymptomatic boys. As a matter of interest, I took L. Oil for 5 years and went on a fat-free diet in the early stages, until the evidence came in that it was a waste of time.




Muscle spasticity is the most obvious impact of AMN. Have you tried drugs like Baclofen or Tizanidine which help some people? They didn't do much for me and I don't take them now. I have found that the best way to alleviate spasticity is leg exercise. It's hard at the start, but muscles loosen up a bit when they warm up through exercise. The gym has really helped me.




Bladder and bowel problems are a nuisance but can be managed. I wrote a piece on incontinence a few months ago which started a long discussion which you may find helpful. See healthunlocked.com/amneasie...

I will update that discussion with some new approaches which I now use.

I would love to meet you when you are next in London.

All the best

Chris