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nomoreALS

New member
Joined
Nov 7, 2012
Messages
2
Reason
Loved one DX
Diagnosis
10/2012
Country
US
State
NY
City
Constable
Hello everyone,

I'm posting on the behalf of my father, who was recently diagnosed with ALS. His symptoms started about a year ago with loss of balance, then loss of coordination in his legs. He remained unconcerned by it, but I prompted him to get checked out. Our family physician ran basic blood tests and everything came back normal. The physician then recommended an arthritis specialist, but we declined this as it wasn't anything painful he was experiencing, it was more just an issue of getting his legs to function properly. We were then referred to a neurologist. My fathers symptoms at this point are: cramping in his calves, twitching in his calves, and balance issues.

As I'm sure most of you have experienced, the wait to see a neurologist is often a process. Several weeks later, we finally got in to see someone. After a physical examination, he thought ALS was likely. Feeling possibly overwhelmed by my fathers case, he referred us to more experienced neurologist in a hospital about an hour away. During the wait, my father had MRI's taken of his neck and upper back area. He also had an MRI taken of his brain. Everything appeared normal. Weeks later, we finally get to see the 2nd neuro. Lacking any emotion or empathy, he gave my father a physical examination, EMG, and NCV tests. At the end of the appointment the neuro believes this is likely ALS and orders a slew of other tests including blood and urine testing, and another MRI of his lower back. (this were never done)

At this time my father is upset with the diagnosis and feels that the latest doctor is simply trying to rid himself of my father instead of searching for something outside of ALS. We again began the search for another neurologist. After a month, we met with another neuro in an even bigger hospital several hours away. I sat through the physical exam, EMG, and NCV with my dad. At this time, his symptoms have progressed. His is slowly losing his ability to walk and the twitching has spread into his upper body and neck. The doctor gives a heartfelt talk to the family including my father, believing this is ALS.

Its been weeks since that appointment. We now need to begin selling the family business, as it depends on my father's ability to physically work. After weeks of depression and loss of motivation to do anything, my father is searching for answers anywhere. People have been approaching him with their stories and offering suggestions. One person has dropped off "electrolyzed water", which I think may be a quack theory, but my father mentally WANTS to believe in something...so he is. We've also made an appointment at the Mayo Clinic in Jacksonville, Florida at the end of this month. He wants to be sure this is ALS before he sells his 30 year old business and uproots the family for a more handicapped accessible home.

My question is...what can I possibly say to him? I'm trying to focus on the positive, but he mentions that "they haven't even looked for anything else, they all say ALS when they look at me" and I have no response for this. I don't want him to lose hope, I want him to remain in this and fight it even if it is ALS. What have others done at this time? Is there any kind of treatment outside of Riluzole? Experimental treatments or anything? Could this possibly be something else? EMG and NCV show abnormalities that are "suggestive of a motor neuron disease".

Thank you all in advance for taking the time to reading this and showing support.
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
Hi

I'm so sorry you are dealing with this. We have a saying here: it can be ALS only when it can't be anything else. MRIS are do e to rule out thi gs like MS strokes or spo e issues. Labs are done to rule out many diseases. NCV rules out thi gs like trapped nerves. The NCV is normal in ALS, it's not in many conditions that mimic ALS, such as CIDP.

I'd suggest your father find a doctor that specializes in neuromuscular diseases. Unfortunately, ALS isn't a diagnosis they give out lightly. It's not one any doctor wants to give.

Certainly there are trials going on. Jax should be able to give you a list of the ones currently running.

If your father is a veteran, there is a lot of assistance from them for him. The ALS association also has support groups for him...and your family and can help with things like suggesting equipment he may need and things like that. Many make adaptions to their homes to make caring for a PAL (person with ALS) easier.

I don't know that you need to go clear to FL for a good doctor, though the clinic in Tampa in my experience is wonderful. I'm sure that if you post in the other main ALS section, you can get some referrals to a facility much closer to home.

It's good that he's trying to remain positive. A second opinion is always a good idea, and it certainly can't hurt to explore the clinical trials, some of which seem to have some promising results.

ALS sucks, to be sure, but it is possible to live with ALS, there are many things today to make life easier that weren't readily available even ten years ago.

This section of the forum is very new, so it may be that your post won't be spotted quite as quickly.

The folks here will answer any questions we can, and we will be here for him if he'd like to join as well.
 
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ECpara

Senior member
Joined
Jan 7, 2012
Messages
605
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
GA
City
Thomasville
So sorry you are dealing with this!

My husband was diagnosed with bulbar onset ALS at an ALS clinic in February after an MRI cleared everything else with our local neurologist. The ALS clinic, in our opinion, was the best place for a diagnosis, they deal with this disease on a grand scale, day after day, and know the proper tests to diagnose. They guaranteed us a 98% confirmation of diagnosis at our first appointment. It turned out not what we wanted to hear, but at least we could get on with the business of living and not second guessing. We continue to attend the clinic quarterly and they are there with awesome advice on how to meet every obstacle as they come up.

If he has employment history of 10 years paying toward SS, he can get SS disability and Medicare fast tracked.

As far as treatment, the only known drug to slow progression is Riluzole. There's a great website you can visit to address any outside treatments, whether they've been tested, how successful they've been, etc. It is ALSUntangled.com.

Hope this helps and good luck to you.
 

lpcarr

Active member
Joined
Dec 2, 2010
Messages
59
Diagnosis
07/2009
Country
US
State
IN
City
Rochester
Hi nomore,
Going to Mayo is a good idea. A good second opinion from a good clinic like Mayo will give you peace of mind. That is what we did also. They still ran their own battery of tests, but it still came back ALS. I ditto notme's post. We also are trying to sell my husbands business because he can not do it any longer. My husband is my hero because of his attitude. He is always focused on what he still can do rather than what he cannot do. Hang in there and try to get him interested in taking some trips or family outings while he is still mobile. We understand for sure. I am learning along the way also as his wife and caregiver. I am not an expert but you will learn alot from people here. Stay in touch and keep us up to date. We do care. Pam
 

bob_s

Active member
Joined
Nov 13, 2012
Messages
96
Reason
PALS
Diagnosis
11/2012
Country
US
State
Missouri
City
St. Louis
Hi nomore,

I am sorry to hear about your father. You asked about experimental treatments for ALS/MND. I have only just begun my own research, but I have found several promising phase 3 clinical trials (the last step before approval) of ALS treatments. The ALS Association website lists some at ALS Clinical Trials Update - The ALS Association.

Bob
 

AlabamaGal

Active member
Joined
Apr 19, 2010
Messages
80
Reason
Loved one DX
Country
US
State
AL
City
Dothan
My husband is one of three brothers out of four with ALS....and not any of the genes they have identified for familial forms are the cause of this beast in this family. One brother has never accepted his diagnosis from Emory, the Mayo in Minnesota, the Carolinas, UAB, etc. And multi-thousands (and I mean many double-digit thousands) has been spent by him, other family, friends, acquaintances on about every "cure" or "treamtment" out there. I would say a big waste and a lot of snake oil salesmen and women raked in a lot of money with quakery. Some of them had M.D. following there names, but I don't think they were/are very ethical. Be careful. Going to Jax or any reputable, full-service ALS Clinic is a good idea. And our Dad is being checked for other things when they are running those tests. They are ruling out other diseases that mimic ALS symptoms. I am so sorry. Blessings to you and your family.
 

hangingon1

Distinguished member
Joined
Jan 29, 2012
Messages
199
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
Georgia
City
Chamblee
I am sorry that your father appears to have ALS. My wife was diagnosed with the same test your father was, and it proved true. She too was in denial and I did not know anything about it. It, thank God, is still a rare disease. She believed that she would get over it until she died about a little over 2 months ago. She was diagnosed in July of 09 and she was so healthy otherwise, I think that it baffled the physicians for a while. Please read this forum, because it will help you understand the disease so much better. I will also help you deal with what is coming. I was a caregiver for 2 yrs. for my wife and I learned so much from the forum. As for medication, Rilutek is the only approved med for als. It will prolong his life for maybe 6 months. It is as costly as gold and probably not worth it. Other things, physical therapy, etc. will not help. He is progressing so rapidly, that he may go sooner than you think, but he may not. Als has no set pattern for everyone. I believe that will power alone kept my wife living for at least a year longer than she physically was able to. Just love your dad while you can. If you want to see my saga with als go to some of my post. I do not pull punches. It is a terrible disease for patient and caregiver.
 
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