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mthapa

Member
Joined
Aug 16, 2012
Messages
14
Reason
PALS
Diagnosis
07/2013
Country
IND
State
Mid Region
Hello Friends,
I am Mahesh Thapa, 35, from Kathmandu, Nepal. I was diagnosed Motor Neuron Disease (ALS)on 2003. I have difficulty in walking, speaking (unclear & Nasal voice but I can communicate), gripping & having problems like: cramping, fasciculation on muscle & tongue. I can stand but need support to walk. It is gradually limiting my physical mobility. I can walk few steps on my own. I have more problem in my hands where the loss of muscle is more than other part of body. actually I can't figure out loss of muscle in other parts of body except my hands & shoulder. I use on screen keyboard to type. I can work on computer for hours. I can sleep well. My blood pressure is normal, don't have any internal problems like: heart, lungs, kidney or respiratory system. I was good sportsman & never used alcohol, tobacco or any type of addiction throughout my life. still I am good player of chess at national level.

I don't use any supportive equipments like feeding tube or ventilation. I eat all types of food as normal people. I don't have digestive problem. I have gained around 10 kg weight since I diagnosed.

I have read many reports on internet that there is high chance of misdiagnosis in the case of ALS/MND. I am not satisfied with diagnosis of Nepalese doctors as my symptoms didn't increase accordingly to other ALS patients. I haven't rechecked up again since I diagnosed ALS on 2003. My MRI report of cervical spine was normal. EMG report had shown weakness in both upper & lower limbs.

These are my doubts:


:arrow: Initially I had problem swallowing food. I used to feel itching on inner part of throat while swallowing food which made me sneeze & food came out through nose. Doctors had asked that I will have to use feeding tube within 6 months. but I used Cetrizine 10 mg for few days & concentrated to stop sneezing while eating & since then I don't have any problem swallowing food after 10 years too.

:arrow: ALS/MND parents encounter respiration & lung problem within few years but I don't have such problem including any other internal problems.

:arrow: weight loss is common symptom among all forms of ALS/MND but I gained 10 kg since I diagnosed.

:arrow: my speaking ability is stable for few years.

I have stopped physiotherapy for 5 years, haven't used medicines like Multi vitamins, vitamin E, calcium or any other allopathic medicine for 4/5 years. I haven't used supplements, nutrients & medical check up since I diagnosed because of my financial situation. but my situation isn't bad comparing to other ALS/MND parents.

please suggest me, is there any chance of misdiagnosis in my case ? I read that some heavy metal infection can create same symptoms like ALS/MND. should I recheck again ? if yes, what types of tests should I do ? please feel free to provide suggestion & share experience.
 

mthapa

Member
Joined
Aug 16, 2012
Messages
14
Reason
PALS
Diagnosis
07/2013
Country
IND
State
Mid Region
I would like to apologize for misspelling parents for patients on my thread.
 

scotslassie

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Thank you for posting so well mthapa. I, myself, do not have the experience and knowledge that so many on this forum have. You have come to the right place for information and advice and hopefully someone will answer your questions soon. I could comment, but will bow to superior knowledge. Keep in mind the time difference on this site and therefore the delay in replies. Best wishes.
 

John1

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Messages
1,028
Diagnosis
10/2000
Country
CA
State
NL
Hello Mahesh,

I wonder if you may have PLS. I was diagnosed in 2000 with ALS which has been changed about a year ago to upper motor neuron dominant ALS or possibly PLS. I could walk until 2005 and could walk using a walker until this year. I can still swallow with only minor problems although I encountered similar problems at the time of diagnosis. My speech is thick but understandable to most people.

You might want to get another EMG test to see whether you have any denervation.

John
 

vzandt

Senior member
Joined
Nov 12, 2011
Messages
570
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
N.H.
If you haven't been back to the doctor since 2003 maybe they know more now then they did then
Id go get checked just in case. Good luck to you and welcome to the forum.
 

mthapa

Member
Joined
Aug 16, 2012
Messages
14
Reason
PALS
Diagnosis
07/2013
Country
IND
State
Mid Region
thanks for the information friends !
 

Luke

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What about Kennedy's Disease (also known as SBMA or spinal bulbar muscular atrophy). It's a very slowly-progressing motor neuron disease that is disabling but generally not fatal. EMG findings would be abnormal and it would affect your facial / throat muscles as well as skeletal muscles, but the breathing muscles are often spared or unaffected until far later in the disease. I don't quite know the genetics of it, but it's passed down through families, so you might see if anyone else in your family has a history of neuromuscular problems. In some cases, people have had this disease without any obvious family history of it. There's a blood test they can do to diagnose this disease. It generally only affects males and the symptoms usually show up in middle age. I'm not a doctor but I read up on this condition when my neurologist presented it as a possibility for me. Anyway, it could be something to ask about.
 

mthapa

Member
Joined
Aug 16, 2012
Messages
14
Reason
PALS
Diagnosis
07/2013
Country
IND
State
Mid Region
thanks for giving information about SBMA Luke. My father diagnosed Limb Girdle Muscular Dystrophy(LGMD) after 4 years of my diagnosis but we don't know other family members who had neuromuscular disorder in past. My facial, throat & skeletal muscles haven't been affected noticeably. weight loss is common in all forms of ALS/MND but I have gained 10 kg after years of history too.
 

Tokahfang

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Joined
Jan 31, 2010
Messages
773
Diagnosis
07/2009
Country
US
State
VA
To be fair though, weight loss is common because of trouble eating and atrophy - and you have very little of both. You very much sound like someone with PLS aside from the atrophy. Perhaps you fall in the "other, not specifically named" MND?

I'm glad you've done so well, whatever is happening to your motor neurons, and hope you'll stick around.
 

AKmom

Senior member
Joined
Jun 2, 2010
Messages
606
Reason
DX UMND/PLS
Diagnosis
11/2009
Country
US
State
Alaska
I have PLS for aprox. 20 years of symptoms. Although its only recent few years they figured it out. I also have some atrophy in my legs and hand muscles. The EMG was basically good with the CVT slightly irregularities. So I wish you luck that you progression stays slow!
 

mthapa

Member
Joined
Aug 16, 2012
Messages
14
Reason
PALS
Diagnosis
07/2013
Country
IND
State
Mid Region
Hello Tokahfang & Akmom, thanks for comments. how do I know that I have ALS, MND & PLS ? what is the difference between MND & PLS ?
 

nikolab

Active member
Joined
Feb 10, 2012
Messages
83
Reason
PALS
Diagnosis
04/2006
Country
SRB
State
Serbia
There are cases where the cause of ALS deficiency of vitamin B12.

The clinical diagnosis of ALS is sure signs of damage GMN and DMN in three regions - one example causes ALS.
 

HelenL

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Dec 17, 2010
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Reason
PALS
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MA
ALS (Amyotrophic lateral sclerosis) is another term for MND (Motor Neuron Disease)... PLS (Primary Lateral Sclerosis) is the upper motor neurons being damaged, PMA (Progressive muscular atrophy) is considered to be lower motor neurons damaged... the opposite ends of the "ALS Spectrum" if you think of it that way. ALS is both upper and lower motor neurons being damaged. For instance, though I have ALS, I primarily have lower motor neuron damage. There's obviously more to it than this description, but if you look up the different terms, then it may make more sense to you. There's also some videos recently posted here that explain the intricacies better than I can.
 

Tokahfang

Senior member
Joined
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Diagnosis
07/2009
Country
US
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VA
There is also a difference between MND in the pure sense - the spectrum Helen described, and in a less precise and proper sense of "diseases that mostly affect the motor neurons". I myself don't have a pure MND, for instance, I have a disease that primarily does upper motor neuron damage (like PLS does), but has side effects that range outside of them due to it's genetic origin.

To put this in perspective, there wasn't even a name for the lower motor neuron only end of the spectrum 60 years ago. Back then, people got diagnosed with ALS and docs scratched their head when they seemed to live forever. Now there's a name for it, and it differentiates ALS and PMA.

So if your motor neurons are the subject of a disease, but it doesn't fit any of the ones with names, you could just have "other MND"... you would be ahead of the naming scheme, as it were.
 
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