Old 10-29-2017, 10:53 PM #1 (permalink)
finiteguy's Avatar
New Member
 
Join Date: 2017
City: Wakefield
State: MA
Country: US
Interest: Other
Posts: 11
finiteguy is on a distinguished road
finiteguy finiteguy is offline
New Member
finiteguy's Avatar
Join Date: 2017
City: Wakefield
State: MA
Country: US
Interest: Other
Posts: 11
finiteguy is on a distinguished road
Default Still not sure if it's ALS

I have posted here before about my wife's condition. She has been in a wheel chair for over a year now and getting very weak. Recently she was hospitalized due to horrible stomach pains and constipation. I sent her to Lahey Clinic 3 times in a week by ambulance and they finally admitted her. They found nothing and I got jerked around by the hospitalist. He didn't even want a gastroentomolgist to see her. Finally I insisted and the looked in her stomach with and endoscopy and found nothing. She went home with as much pain as she had when she went in.
Having said this..is it common to develop gastro issues with ALS? She still does not have a clear diagnosis of ALS in fact many nurses and PT people look at her and say that it doesn't look like ALS...her muscles are extremely stiff in her left arm and neck. She can still move her right arm and right leg a bit.
Also, there seems to be a strong genetic issue as well. Her mother had neurological problems, as well as her 2 sisters. My wife developed psychosis 20 years ago when she started hearing voices, so the psychiatrist gave her risperdone which is a know dopamine antagonist that can affect motor neurons.
The hearing voices is a mystery because she is not schizophrenic. People don't become schizophrenic at age 50. Any advice is greatly appreciated. She had an inconclusive EMG 2 years ago because she couldn't tolerate it, but she completed the Nerve Conduction part and they found low velocity.
finiteguy is offline  
Old 10-30-2017, 11:54 AM #2 (permalink)
KarenNWendyn's Avatar
Senior Member
 
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 926
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
KarenNWendyn KarenNWendyn is offline
Senior Member

KarenNWendyn's Avatar
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 926
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
Default Re: Still not sure if it's ALS

GI symptoms and auditory hallucinations are not features of ALS. In terms of her other symptoms, she really needs to see a neurologist to get a diagnosis.
KarenNWendyn is offline  
Old 11-03-2017, 11:30 PM #3 (permalink)
finiteguy's Avatar
New Member
 
Join Date: 2017
City: Wakefield
State: MA
Country: US
Interest: Other
Posts: 11
finiteguy is on a distinguished road
finiteguy finiteguy is offline
New Member
finiteguy's Avatar
Join Date: 2017
City: Wakefield
State: MA
Country: US
Interest: Other
Posts: 11
finiteguy is on a distinguished road
Default Re: Still not sure if it's ALS

Quote:
Originally Posted by KarenNWendyn View Post
GI symptoms and auditory hallucinations are not features of ALS. In terms of her other symptoms, she really needs to see a neurologist to get a diagnosis.
The doctors that she has seen at Lahey Clinic in Burlington Ma...simply want to call it ALS. That propagates through her other doctors. When the see that she has some sort of motor neuron disease...they blame it on ALS without a confirmed diagnosis.
finiteguy is offline  
Old 11-04-2017, 03:55 PM #4 (permalink)
KimT's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,780
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
KimT KimT is offline
Extremely Helpful Member

KimT's Avatar
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,780
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
Default Re: Still not sure if it's ALS

Can she get a second opinion as Mass General? That's what I would do.

I had a friend from church who had very strange symptoms. She ended up having stiff person syndrome.

I would get a second opinion from a neuromuscular doc.
KimT is offline  
Old 11-07-2017, 11:11 PM #5 (permalink)
finiteguy's Avatar
New Member
 
Join Date: 2017
City: Wakefield
State: MA
Country: US
Interest: Other
Posts: 11
finiteguy is on a distinguished road
finiteguy finiteguy is offline
New Member
finiteguy's Avatar
Join Date: 2017
City: Wakefield
State: MA
Country: US
Interest: Other
Posts: 11
finiteguy is on a distinguished road
Default Re: Still not sure if it's ALS

The doctors at MGH think that the neuromuscular disease is causing horrific gastrointestinal pain. The pain is coming from her upper part of her stomach...near her esophagus. It's all very odd. I've never heard of ALS causing horrific stomach pain.
finiteguy is offline  
Old 11-08-2017, 02:03 AM #6 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,959
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,959
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Still not sure if it's ALS

I'm sorry, if she doesn't have a firm diagnosis, how can that be waved off as the cause of her pain? There is no "it."

I'm not sure why you think "hearing voices is a mystery because she is not schizophrenic," nor why schizophrenia can't be diagnosed at 50 [various studies show onset into the 60s]. Psychosis is a frequent occurrence of schizophrenia, as well as other psychiatric disorders. Hearing voices in psychosis is quite common.

My best advice, which you've heard before, is to pursue a definitive diagnosis not simply to have one but to relieve what suffering you can. The gastro issues may or may not be related to whatever neurological disease she may have (I'm not sure more systemic disease has been ruled out). At any rate, if she is in pain, I should think in Boston you could find a gastro willing to treat empirically and perhaps consult with her neuro/a medical geneticist if/as indicated.

Best,
Laurie
lgelb is offline  
Old 11-08-2017, 03:20 PM #7 (permalink)
Lkaibel's Avatar
Senior Member
 
Join Date: 2016
City: Minneapolis
State: MN
Country: US
Diagnosed: 06/2016
Interest: I am a caregiver for someone with ALS/MND.
Posts: 990
Lkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud of
Lkaibel Lkaibel is offline
Senior Member

Lkaibel's Avatar
Join Date: 2016
City: Minneapolis
State: MN
Country: US
Diagnosed: 06/2016
Interest: I am a caregiver for someone with ALS/MND.
Posts: 990
Lkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud ofLkaibel has much to be proud of
Default Re: Still not sure if it's ALS

Schizophrenia can be diagnosed at 50 the way ALS can be at 28. It does happen, but it is rare.

Situations like your wife’s are part of what certified ALS centers are for. Assuming you are here in the states, I would get her to one asap. If not, find a well known specialist.
Lkaibel is offline  
Old 11-08-2017, 11:49 PM #8 (permalink)
finiteguy's Avatar
New Member
 
Join Date: 2017
City: Wakefield
State: MA
Country: US
Interest: Other
Posts: 11
finiteguy is on a distinguished road
finiteguy finiteguy is offline
New Member
finiteguy's Avatar
Join Date: 2017
City: Wakefield
State: MA
Country: US
Interest: Other
Posts: 11
finiteguy is on a distinguished road
Default Re: Still not sure if it's ALS

My wife is currently at MGH in Boston...I think they will get to the bottom of this. Wish I had gone there sooner. She can no longer walk and her hands are very weak. He voice is very spastic within the last few months....lost about 70 lbs. in 5 months due to lack of appetite. Her vitals are perfect....BP, oxygen and heart rate. No problems choking and can swallow pretty good. She is starting to have cognitive issues and confusion at night.
finiteguy is offline  
Old 11-09-2017, 02:20 AM #9 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,959
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,959
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Still not sure if it's ALS

Glad to hear she is getting evaluated at MGH. Let us know how it goes.

Not sure of her baseline weight, but rapid weight loss as you describe should certainly have gastro effects and vice versa-- they will have to look at chicken vs. egg.

Best,
Laurie
lgelb is offline  
Closed Thread

Tags
advice, age, als, als?, arm, chair, clinic, constipation, diagnosis, emg, genetic, hearing, muscles, nurses, problems


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off


All times are GMT -5. The time now is 02:47 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016