I have diagnosed MND 2003 - But no issues now

[helloshivahere]

Hi All,

I have diagnosed MND after conducting EMG etc in Jan 2002 when I was in 20's now I am 30 and I got married

I was worried like mad and gone through all web stuffs etc during my initial stage. I lost bit muscles in Left hand and and left hand palm - If you watch closely you can Identify otherwise its very difficult to locate


Now almost I forget I have MND. Its not progressed or even improved from that stage. Its just stay calm as it is.

Just taken Rilutor/Vitamin E/Antioxidant during initial stage about a month I feel no use of taking it since there is no way you can monitor the progress or deterioration etc..


But somewhere in my heart its hiding that I have MND. Will it progress or even It can be stop for time being :-?

 

[KANSASTOM]

Maybe this is Monomelic Amyotrophy.

 

[Danijela]

I was thinking the same, Monomelic Amyotrophy or Hirayama Disease. The fact that your atrophy remained confined to one hand/arm points towards it. Plus the fact that it is most prevalent in young males, and in Asia (I see you come from India). Have you been seen by a neurologist since your diagnosis? Monomelic Amyotrophy/Hirayama tends to progress between 1 to 4 years, after which it remains stationary.

All the best to you

 

[helloshivahere]

Thanks mate. God only knows. I have gone through all kind of panic and searched almost 8-10 hours in net for detailed info. I had taken complete print out of Stephen_Hawking website. Any one encounter MND definitely will not miss that website. Become a member MND association etc..

But all this creates just fear in my mind . I had even fight with a neurologist he said you will die in 5 years. Now I am in 6th year.

One good day I decide just leave it because I am not going to find a cure for it . Medical professionals working on it.

I continued my normal life without compromising anything its seems just fine

No further progress sometime bit muscle twitching and shivering I can feel and it remembers me I have MND

But dr confirmed its an ALS

 

[helloshivahere]

I was thinking the same, Monomelic Amyotrophy or Hirayama Disease. The fact that your atrophy remained confined to one hand/arm points towards it. Plus the fact that it is most prevalent in young males, and in Asia (I see you come from India). Have you been seen by a neurologist since your diagnosis? Monomelic Amyotrophy/Hirayama tends to progress between 1 to 4 years, after which it remains stationary.

All the best to you

Yes I am Indian male 24 years old when I was diagnosed but now I am in 30. Same story i met a guy during my initial days in Chennai India. he was diagnosed 13 years back still alive with same condition no further detoriation.

But right now I am working in Africa no way you can find neurologist going back to India in march 2010 let me find some good neurologist will going to discuss the same issue

 

[helloshivahere]

Thank god I found a new term after 6 years Monomelic Amyotrophy or Hirayama Disease.

It seems mostly for Indians and Japan young males. How to find out its not MND its only MA or Hirayama

 

[Danijela]

Hirayama and MA usually affect only one limb, but some progression to a second limb is possible. No bulbar symptoms. It is a lower motor neuron disease, so you should not have upper motor neuron signs (such as hyper/brisk reflexes, spasticity, Hoffman and Babinski sign). However, this is a grey area as some people with Hirayama and MA have some mild upper motor neuron symptoms. This is why medical profession is reluctant to attach any definitive diagnosis and many prefer to simply classify it as MND or within MND spectrum. I also think that EMG results differ in ALS and MA, in terms what they find in unaffected limb, but this is where it becomes too technical for me.

Whatever you have got seems slow, so that is a good sign.

 

[helloshivahere]

Thanks for explanation. I'm so sorry about your partner.

I don't have any bulbar symptoms and its not progressing. Just affected in left hand and palm . You are true its too technical for a non medical professionals.

Even I guess many of neurologist not aware of that . I was really fed up with an neurologist. He don't even see my MRI Scan report and case records just heared the term MND from my mouth and he said u will die in next 5 years . He is crazy really and mad me crazy for a month

I plan to do EMG again in early 2010 let me try to find the differences from ALS & MA through a good neurologist

Merry Xmas wishes for you & Family

 

[KANSASTOM]

The EMG results for MA and ALS are the same, the fact that you have had no progression for so many years and your age, is very suspicous. I would seek a Dr. with some MA experience. I have been diagnosed with MA, I have had no progression for almost two years, and intrestingly my neurologist is from Pakistan.

 

[helloshivahere]

Thanks. So MA wont progress right. ALS should progress but some PLA very rare MND may be progress very slowly am I right.

 

[KANSASTOM]

That is what I am being told about MA, that there will be no progression, so far they are right.

 

[Dr. Khafagy]

Hello,
I have some questions..may you kindly find answers...:
1- Can Monomelic amyotrophy affect the lower limb?
2- What did you feel exactly in your arm at the very early start of symptoms?
3- How long did it take to become staionary?
4- Do you currently experience any muscle twiches in any part of your body including the affected arm?
5- I am typing with both my hands as I used to do since a long time, do you think that disturbance of this skill is an early sign of the disease in any of my upper limbs.

I do appreciate your answers and I am welling to receive them as fast as you can....thank you