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hansvin

Member
Joined
Dec 2, 2015
Messages
13
Reason
Loved one DX
Country
IND
State
Delhi
City
Delhi
First of all, I can;t thank enough the people on this forum.

Chronological series of events:

June 20th (my indian wedding): My mother is exhausted and tired a bit. She has arthritis and thinks knees are not holding up well.

June 22nd: All of us take a long flight to US (16 hours straight), bad swelling in feet. Can't walk at all the first day. Had to drag her left feet to go to a restaurant 100 meters away.

June 27th (my US wedding): We did the mother-son dance without too much issues and she enjoyed the wedding.

July 8: Time to leave US. Struggled throughout her first trip in US. (Baltimore-Erie-NY)
Till August 31: She was supposed to retire by April 30th but took an extension as she loved working and being active. But after tripping twice in her school and then not being able to walk properly, she decided she will just retire and get the knee replacement surgery done and then enjoy her retired life.

Sep 30: Knee surgeon suggested lumbar MRI, EMG/NCV and doppler test done noticing her left foot drop.

As of Oct 30, her test results are follows:

EMG: widespread, active, chronic + ongoing motor axon degeneration affecting Left> right lower limbs and also affecting upper limbs
(on checkup her upper limbs, bulbar, facial etc. everything is normal as a healthy person)

Lumbar MRI: Comression ruled out by spine surgeon

CSF - normal
Doppler - normal
Electrophoresis - distored M band in gamma (immunofixation suggested)
Immunifixation - no M band seen (normal)
ANA - normal
ACE - normal

Symptoms: Left foot drop, fasciculations in hips and below, weakness appearing in right leg also, upper limbs, bulbar etc are perfectly normal, mobility severely affected. Can't stand or walk without support.

As of Nov 31: Went through IVIG treatment trial on our doctor's suggestion.

As of Dec 13: Ivig completed on Nov 31 and no changes seen so far (we are still hopeful). there are some side effects of ivig - general weakness, loose motion etc.

Symptoms: same as above.


I might have missed something, a report here and there, so let me know. My wife and I are with her throughout. From an active teacher to wheelchair in 4 months. She is very depressed as she loved being active and having a busy day and it has been taken away from her.

Any help is appreciated. Thanks so much all the wonderful people.
 
Has her doctor diagnosed her?

You're asking about ALS, of course. It takes a long time and many tests to diagnose ALS to the exclusion of all other possibilities. Her doctors must look at many things.
 
Yes the diagnose they have given is Anterior horn cell disease (I know!). My doctor said we need to wait to see if IVIG works. I just wanted someone to look at the symptoms and tell me if its atypical? The progression rate according to the doctors is too fast for ALS. Just wanted to hear more thoughts.
 
Yes the diagnose they have given is Anterior horn cell disease (I know!). My doctor said we need to wait to see if IVIG works. I just wanted someone to look at the symptoms and tell me if its atypical? The progression rate according to the doctors is too fast for ALS. Just wanted to hear more thoughts.

The progression you describe is unusually fast. My wife had a very fast progression as well, from first symptom to wheelchair in 4 months.
 
Thanks for the information. Appreciate it.

Anyone can provide more information which can be helpful? Thanks.
 
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