if it is not the ALS, what else?

[cwms]

hi im a new member
my dad may have the ALS and we are all anxious about that.
well,
2 years ago (even more), my dad had some trouble pronouncing some letters...later on he stopped speaking..in fact he cannot move his tongue...now, he doesn't speak at all and he has difficulties swallowing...He chocks a lot when hes drinking or eating...
2months ago he had some difficulties moving his left hand...now he cannot move his left fingers and this left hand seems to be paralyzed (when u touch it he can feel it but not moving it!)..
He can walk normally...but he seems tired and weak all the time...

im extremely afraid he has the ALS...
but i was wondering:
if he has this disease wouldn't all of his body be paralyzed by now?
what other disease may have the same symptoms as the ALS?
any advice? plz help
thank u

 

[jewelchic70]

Hi CWMS,

I typically dont respond to these threads because I am no expert. I look through posts to gather information for my knowledge, like you.
I couldn't help but pass up the oppurtunity to share this with you.

Some diseases that can cause ALS-like symptoms are

spinal cord tumor,
multiple sclerosis,
stroke
a herniated disk in the neck,
syringomyelia, or cervical spondylosis.
human T-cell leukaemia virus (HTLV),
Lyme disease
syphilis
tick-borne encephalitis
post-polio syndrome,
multifocal motor neuropathy,
CIDP,
spinal muscular atrophy
AND more!

Please, take him to a neuromuscular specialist. Let them perform the needed examination and EMG. They should EMG his bulbar region too. This will evaluate any damage that ALS can cause if the speach is a symptom.

I just asked a similar question about progression and from that answer will share with you that each individual progresses at a different rate.
Please let us know how your appointment goes! Good Luck!

 

[cwms]

thank u jewelchic70. i really appreciate ur post.
well my dad and I went to so many doctors.
some of them reviewed all the MRI and EMG he did and said it is the ALS
some others said no way it is the ALS they said it is just a matter of time and it is only some muscles weakness and i dont know what!

i forgot to mention that my dad is 54 years old
he had got a rein transplantation 7 years ago and he is under dialysis treatment now

 

[BarryG]

Not to get you more worried than you already are (if that is possible) but your dad's situation and symptoms sound pretty much like mine.

Summer 2007 - slurred speech
January 2008 - diagnosed Bulbar onset ALS
Summer 2008 - difficulty swallowing
February 2009 - PEG feeding tube placement and starting leg leg/foot, right arm/hand problems
January 2010 - Stopped eating by mouth and cannot speak
May 2010 - Still walking using cane and walker but tired, started BIPAP

I am also 54. I would really encourage continuing with the testing, it is likely that many neurologists who are not ALS specialists are not as familiar with bulbar onset as with limb onset.
Good luck.

 

[cwms]

thank u barryG..
i dont konw what shall i do..each doctor has his own analysis! noone is giving us something sure!
im still hoping its not the ALS! i cant beleive my dad has the ALS and i dont want to!
we visited almost 20 doctors and still not getting anything!

can anyone plz tell me what is the "LDN" ?

 

[jewelchic70]

Hi CWMS

I agree with Barry. Try to find a neuromuscular specialist to help guide you in the right direction so you know what you are facing.
I did a search for you but I am not familiar with search engines. I am not big on the computer and being in NY doesn't help when searching in Lebanon.

Try searching for an ALS clinic or a neuromuscular DR.
Im sorry Im not much help but the right DR should have more answers.

Good Luck!

 

[brooksea]

LDN = low dose Naltrexone.

 

[jewelchic70]

Hi again CWMS,

I just replied to your other post but I added a few links that I think will be very helpful to you but I was told it needs to be approved before posting. I thought I'd leave this little bit of info to help you answer your question about MS and MMN.

MS can not be diagnosed on EMG. That is usually DX with MRI.

MMN can cause a dirty EMG and yes can be diagnosed from an EMG. EMG reveals features of a demyelinating polyneuropathy, limited to motor neurons. Conduction block is often present, although other features of demyelination such as temporal dispersion of waveforms and conduction slowing are also helpful.

I will try to send you a PM with those links as well.

 

[cwms]

jewelchic thanks a lot! ur helping me a lot and i really appreciate that!

 

[jewelchic70]

Anytime! :smile:

 

[AndyDJX]

Hi CWMS--

I'm sorry to hear that your father is having such debilitating symptoms. Do you know what the EMG results were? Do you know why some doctors thought it was ALS, while others thought it wasn't? Were there specifics that either side pointed to?

Best,

Andy

 

[cwms]

hi Andy sorry for the late reply ive been really busy with my finals
well the doctors who thought that it wasnt ALS said that only the left part is paralyzed and not all members and theres no problems in the feet...there is no spasticity in the paralyzed arm and it is too slow to be ALS
while others thought it was ALS because there is no other options especially that my dad has respiration problems recently and small frustrations...

recent news: my dad is going to the hospital next week...for feeding tube placement...
we are facing lot pf problems and still arent sure whether it is als or not

thanks for caring andy
and im