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rangerbob

Member
Joined
Aug 16, 2010
Messages
24
Reason
Learn about ALS
Diagnosis
01/2011
Country
US
State
CA
City
Mountain View
greetings everyone. wanted to stop by and give you update on my wife...we were hoping it wasnt MND but not so sure. its probably not ALS but probably MND... :cry:

today in her current state she is having the following issues:

a. she can no longer lift her arms any higher than shoulder level
b. is having a very difficult time walking up stairs
c. is short of breath walking the shortest of distances
d. beginning to have weakness lifting herself from a sitting to a standing position
e. has extreme fatigue which she describes as having "zero energy"
f. starting to feel increased weakness in her upper thighs
g. can no longer lift her arms for any extensive amount of time to wash her hair, bath herself, drive a vehicle, and other simple tasks

the doctors have looked at everything to include cancer, etc.... she was admitted as an inpatient for 5-day IVIG treatment which provided some relief but symptoms all came back within several days. he is trying steroids right now as well... he said, "i'm gonna do all that i can"

her doc did another EMG about 10 days ago and concluded the following:
"Needle EMG examinations of the right tibialis anterior and the left thoracic paraspinal muscle showed abundant positive sharp waves and fibrillation potentials. Motor units captured in the tibialis were polyphasic and large with increased amplitude and duration; recruitment was reduced as well. This study, combined with previous studies, demonstrates electophysiologic evidence of a motor axonal neurogenic process with widespread active and chronic denervation with reinnervation. This is consistent with a diffuse disorder of lower motor neurons or nerve roots."

i guess at this point we are starting to prepare ourselves for the worst. i am trying to get her in for an appointment at johns hopkins neurology..i am afraid if i wait too long she will no longer be mobile. her four month pregnancy has us concerned as well. i am also starting to get our bathroom redone as well to accomodate the possibility of a wheelchair.

any advice, insight or the such on anything above (such as the EMG or getting an appt at JH or mental/emotional hurdles to prepare myself for) would be greatly appreciated....thanks!

RB out.
 
wait...ALS is the same as MND. My prayers to your wife, how old is she? to my understanding there isnt a complete diagnosis yet, keep hoping:)
 
my wife is 32 y/o.... thanks for your help.

hopefully we can uncover something before this gets worse. but truthfully, i am seeing her deteriorate before my very eyes... and its tough to believe...
 
Hi RB,

Sorry to hear that your wife continues to progress.

I go to Hopkins, best way for you to get an appointment would be to ask a doctor who currently sees her to handle requesting the referral.

One thing to keep in mind, is that generally whatever specialty that doctor is, is the department she will be scheduled to see first. Originally my rheumatologist referred me, and he thought I would be seen by neurology, but, as it turned out I first was seen by rheumatology and referred by that JH doctor to neurology.

When you get your appointment, if you need help with parking advise, etc, let me know and I'll try to help.

The entire hospital continues to amaze me with not only their competency, but also their caring attitudes. This is from the reception clerks right up to the head doctors. My daughter had a similar positive experience in a totally unrelated field with surgery she had last year.

Good luck to you, I hope some encouraging answers are right over the horizon for your family.
 
RB,
I am sorry that you and your wife are going through this. You are right in trying to see a MND specialist at John Hopkins as soon as poosible. Continue to stay strong and keep the faith. Your wife is fortunate to have you by her side. Best of luck, I will keep you and your wife in my prayers.
 
Dear Rangerjoe,
I go to the ALS Clinic at Cal Pacific Med Center in SF. I think you could get in easier on you wife than traveling to Maryland. They are very good and kind too.
praying for you both.
Pat
 
thanks everyone for the support...

i guess one of the hardest things for me has been what to tell my wife when she is sad. i give her hope but then she says, "my arms feel weaker, everything is getting worse i can tell" -- i am afraid of taking her on an emotional rollercoaster.

how do you all deal with this? i want to give her hope but then again maybe i need to temper my enthusiasm if you will... thoughts?
 
It is great to be posiitive but don't have your positivity offer false hope. Try to focus on each day without thinking of what the future may hold. Ignore the future and enjoy each day.
 
wjat did the doctor say, did you ask them about MND?

the doc has been very careful not to give us any diagnosis yet. he did say he was hoping that it was CIDP or MMN but told us after his last EMG that he has ruled them out.

he did say maybe it could be PMA, but wants to see how the treatment fares before coming up with a conclusion.

we did notice on one of his internal reports he did say that "he has serious concerns that this is a motor neuron disease"

given the severity of the diagnosed, i guess he wants to make sure we are 100% correct before going there...
 
good advice Pat. i will look into that...
 
to sofar....

ALS is a Motor Neuron Disease (MND). Motor neuron diseases encompass several different varieties of which, ALS is among the most severe. Why don't you google "MND" and educate yourself a bit?

Rangerbob,

Thanks for taking the time to look ahead a bit. I'm sorry your wife seems to be progressing at such a rate. I'm hoping for the best for you!
 
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Sorry about the name mix up,Rangerbob,
I am a Kaiser member, but all I needed was a denial letter from them and my care is paid for through MD/ALS funding.What a blessing.
The ALS clinic at Cal Pacific is called the FORBES NORRIS CENTER, TEL 415 600-3604.
Pat
 
why was my post deleted? zaphoon is challenging my intellegence. He could have clearly clarified instead of insulting me. Anyways all the best to you guys,really:) im out of this site, but will continue to spread awarness!
 
We don't allow people to be called names, your response was inappropriate.
 
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