Status
Not open for further replies.

John in Tonawanda

New member
Joined
Sep 6, 2006
Messages
2
Reason
Loved one DX
Country
US
State
NY
City
Tonawanda
A little background first and them some questions
My 80 year old mother started to experience migrating joint pain right after she took the new once a month Boniva pill to prevent osteoporosis. The pain started in one foot and slowly worked it's way up the body (leaving the previously painful joint feeling good again). This Boniva is a relatively new drug but a small percentage of people taking it report similar devestating side effects (see askapatient.com and search on drug Boniva). Over a period of about 5 months the pain worked it's way to her head and she had/has trouble swallowing and talking. In the mean time, although the pain has subsided, she has lost stength in her legs. She is now mostly bedridden but can still get up (with a walker) and use the bathroom. SHe says it feels like marbles are rolling around in her head. She can barely talk and has difficulty swallowing. She has a constant cough.
Her nuerologist thought she had MG (Myathenis Gravis) but, after some tests and some time on a drug intended to treat MG, she changed her mind and said it didnt look like MG. She then referred mom to a nuerological specialist at the Cleveland Clinic.
The Cleveland Clinic ran some tests (spinal tap, EMG, ...) and at discharge told her that (most of) her symtoms and tests were consistent with ALS and it is likely she may have ALS. They said however that the progression of the symtoms (migrating joint pain) was not considered consistent with ALS. They felt the Boniva tie-in was concidental. Not exactly a firm diagnosis.
In January she was dancing and walking/excercising extensively, now she is in very bad shape. She asked for and received her last rights last week and is convinced she does not have long to live.
A few questions:
1. What do we/they need to do to get a diagnosis?
2. Has anyone here experienced similar disease onset symptoms?
3. Isn't 80 a bit on the old side for ALS to strike?
4. Any specific advice you might offer to me would be appreciated.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi John. Sorry about your mom. Getting a diagnosis of ALS is difficult as there is no one test to get a diagnosis. They test for everything, rule other diseases out and by that time the symptoms usually point to ALS. Not very encouraging I know. Other than a nerve conduction study it sounds like they have given your mom most of the usual tests.
I can't recall anyone else having joint pain as a specific first symptom.
While ALS usually strikes in the 50-70 year age bracket there are cases from early teens to over 90. Unusual but they are there.
Try to make her as comfortable as possible. Attitude is important and if she has given up it will be difficult to try and lift her spirits. If you can convince her the end may not necessarily be near that might help. We have people on forum with bulbar symptoms that have been here 5 years and more. Hope this helps. Take care. AL.
 

John in Tonawanda

New member
Joined
Sep 6, 2006
Messages
2
Reason
Loved one DX
Country
US
State
NY
City
Tonawanda
Still no DX but mom asked today to have all her appointments cancelled and to be placed in Hospice.
She has started to experience vision problems (difficulty focusing) and her other symptoms have generally become worse.
I feel the doctors at the Clinic have failed her. She had an appointment sched for this wed to "consult" with the doctor doing the muscle biopsy. AFter that it would have been another trip down for the test and then another 2 weeks after that for the results. They dont seem in any rush to help a rapidly failing patient. I am very frustrated waiting and mom has just given up and wants to die in peace. I think once she gets into hospice, she needs to agree to halt all diagnosed work and basically just accept paliative treatment. Maybe i'm still holding out hope that it is not ALS and is something treatable.
2 questions for anyone out there reading my rant:
1. Would a muscle biopsy confirm ALS?
2. are vision problems common at end stage of ALS?
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
I don't think this is a rant. You do have some issues here. I don't think a muscle biopsy will 100% confirm ALS. It is just another in the list of tests that will point the docs in the right direction. Big AL has had one so he might be able to tell you more about that.
While some people report vision problems I don't think it is a common occurence with ALS, early or end stage. I would have thought that she would have got a diagnosed from the clinic but ALS is so very hard to diagnose and at your mother's age there are usually other things going on to complicate matters. Hopefully you'll be able to work something out for her.
 

Tamra

New member
Joined
Sep 23, 2006
Messages
6
Reason
Loved one DX
Country
US
State
CA
City
Nevada City
Google

Have you Googled "motor neuron disease"? My 79 yr-old father has been deteriorating for 9 years and the doctors still can't find a diagnosis. He just "passed" his EMG, so they said he does not have ALS (although he has every symptom - including his most recent one, the loss of swallowing). I have looked up motor neuron disease in the hopes of learning more about my father. I have seen sites that list the symptoms you describe with your mom (including the vision changes). Hope that helps you. Good luck and I wish you the best with your mom. It's very hard to watch them suffer and lose hope.
 

skyecatcher

New member
Joined
Feb 23, 2010
Messages
3
Reason
CALS
Country
FL
State
Orlando
City
3509 Admiralty Court
I came across your post the other day and joined this forum so that I could write to you. In the spring of 2006, my mother, at age 76, contracted ALS after taking Boniva. She had been on a once-a-week form of the drug for some time when we went to her doctor to discuss a problem she was having with slurred speech. The doctor told her the slurred speech was due to allergies and prescribed a nasal spray. When my mother told her she did not like taking the "bone medicine" and that it made her feel "funny", the doctor prescribed the once-a-month Boniva. She didn't want to take it but the doctor insisted it was best that she did. immediately after taking her first dose she became stricken with extreme joint pain and was bedridden for several days. She described the feeling as "having broken glass" in her joints. It passed and she stopped taking the Boniva, unfortunately, the slurring became worse and she went to a neurologist who diagnosed ALS. She passed away on July 23, 2008. I think of her every day and how brave and optimistic she was throughout her ordeal. And I wonder if there was anything we might have done to prevent this from happening to her. I don't know if the Boniva had anything to do with it or if it simply aggravated the condition but I wanted to contact you about this. I would also like to find out if anyone else has had a similar experience. If you know of anyone, please let me know. My best wishes to you and your family.
 

BrianD

Distinguished member
Joined
Sep 15, 2009
Messages
403
Reason
PALS
Diagnosis
08/2009
Country
US
State
Colorado
City
Colorado Springs
Skye...

Note this thread is from 2006. John hasn't been on the forum since 2006 either.
You can check on a person's public profile for when they last were active on the forum.

Brian
 

skyecatcher

New member
Joined
Feb 23, 2010
Messages
3
Reason
CALS
Country
FL
State
Orlando
City
3509 Admiralty Court
I noticed the thread was old but thought he might still be on the forum. Thanks.
 

Blubear

Senior member
Joined
Oct 24, 2009
Messages
941
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
Wa.
City
Puyallup
I am personally glad this came up. When the doctor goes to give me Boniva, not gonna happen! I have read enough here to scare the hell out of me. I know all drugs have the possible side effects issues, but this one hits to close to home.
 
Status
Not open for further replies.
Top