I’m new here ...just diagnosed with AMN

[zane_a]

Hello! I am 38 years old woman from Latvia and it looks like I am the only one with AMN here. I was so glad I found this site!!!

Here is my story. (sory for my english :))

Three months ago our son, our sweet 7 years old boy was diagnosed with ALD... and it was too late for stem cell transplantation. My heart was broken, all my life turned around... it is so hard to discribe my emotions...I've always been happy and positive thinking everywhere try to see the good things, but how to live now ??? !!!

With our son's diagnosis became clear what exactly happens to my feet ... Two years ago I had herniated disc surgery and I thought my legs feeling cold and stiff in the morning is due to back surgery ... now I have already diagnosed with AMN. I'm confused, what should I do ... No one neurologist in Latvian here do not know anything about the disease.Medications I use is gabapentin against leg freezing. What else you could recommend me to do? Has anyone tried apitherapy or some alternative treatments?

[COwithAMN Administrator AMN EASIER Volunteer]

Hi there Zane (is that your name?)

You are not alone! We are all here to help.

I am sorry that none of your Doctors know about AMN. This is not unusual - it took other countries many years to understand AMN.

I am so sorry that you have a son with ALD, and that it is too late for stem cell transplantation. You need to contact ALD Life in England at aldlife.org who have years of experience helping parents with ALD children. They have many leaflets and you can talk directly to them to get support and advice.

For yourself, and for all of us with AMN, there are as yet no cures. However there is a lot you can do, and the main problem to deal with is usually spasticity in the legs. I see you use gabapentin, which is fine. On this site you may see many other suggestions about drugs you can try. Be careful when you read these, as most are not yet proven as being effective. I am the administrator of this site, and don't comment generally on new drugs that people are experimenting with unless I believe they could be harmful.

But don't assume because someone claims they work, that they will work for you. We are all different and this disease can affect us all a bit differently.

There are many ladies on this site who can help you from a female perspective, and I am sure they will be commenting very soon.

Your English is excellent!

Very best wishes, and stay in touch,

Chris

[zane_a in reply to COwithAMN]

Thank you, Chris!

I will contact to ALD Life to get support and advice, we realy need it!

I would be pleased to receive comments from ladies. I am very interested in

alternative treatments - what have you tried?

Zane

[COwithAMN Administrator AMN EASIER Volunteer in reply to zane_a]

Hi Zane

I need to emphasise that there are no therapies that the evidence shows have a lot of effect, except in perhaps in a couple of areas. The first is the various drugs that help with spasticity. These include Baclofen and Tizanadine. The drug you take - gabapentin - may be more help with restless legs.

I have tried Baclofen and Tizanadine but I don't take them now because they don't seem to help me. You will find this as a common problem for us all - some AMN-ers find that some drugs work, others don't. You just have to try them and see what they do for you.

The other problem with AMN is the way it affects bladder and also bowels. I take a drug called oxybutynin hydrochloride which seems to help by reducing the tendency of the bladder muscle to squeeze when you don't want it to. I use it to reduce the trips to the bathroom at night.

There are some AMN-ers who may suggest other drugs. One that some people take is 4-Aminopyridine, or 4-AP. A number of U.S. Folk on this site take it I believe and feel it helps. One of the problems that we deal with is that our national health providers ( in the, U.K, the NHS) do not provide some drugs on a free basis I because they are not seen to be helpful. So you might have to buy them yourself.

So, the bottom line is some things work for some people and some don't. Your just have to try them.

Personally, I am not a believer in homeopathic medicines such as apitherapy. They won't do any harm but there is no evidence that they work. But others feel differently.

All the very best

Chris

[dryder]

I too am female with AMN. First, you are not alone and I wish I could help with the answer of your world upside down with your son. I do stretching, yoga, but most of all, Keep moving! Stiffer and more pain if you don't keep the legs moving.. I know it is hard sometimes. It is also important not to over do it! As women, we push ourselves too much..

Keep the faith!

[zane_a in reply to dryder]

Yes, I've noticed that I have seizures when I have not walked enaught. I go for long walks with my dog.

I enjoy this and wish that I could walk for long, long years !!!!

[COwithAMN Administrator AMN EASIER Volunteer in reply to zane_a]

Hi Zane

It's very likely that you will be walking for years! This disease usually progresses very slowly.

As dryder says, "keep moving". AMN means that the muscles of the legs are artificially stimulated all the time, so they are full of excess muscle tone. This means they get tight and over time they get shortened. The best thing you can do is stretching. Do it each morning and after walking. The more you can stretch muscles, the longer you will be able to walk reasonably well.

My medical consultant has repeatedly said to me that while Baclofen and Tizanadine can work for many, that any antispasmodic drug will have the effect of making muscles feel less strong, just because it is reducing this capacity to retain muscle tone. So it's swings and roundabouts as we say here - you have to decide which compromise works best for you.

All the best,

Chris

[joyepperhart in reply to zane_a]

Zane, you are a female? Do u have seizures related to AMN?

[zane_a in reply to joyepperhart]

Yes, I am female! I think that my seizures are related to AMN!

[zane_a]

Thank you Chris!!!!! I'll do my best!!!! It is so good to read that usualy it progress

[zane_a in reply to zane_a]

slowly ( o, sory