Status
Not open for further replies.

nsmith555

Active member
Joined
Feb 27, 2007
Messages
67
Reason
Loved one DX
Diagnosis
03/2007
Country
US
State
OK
City
Guthrie
Hello.
I found this site a few weeks ago when I first started searching the internet for ALS as it looks like my mother has it - very possibly the bulbar form - altho a definite diagnosis has not been made.
I attended her 1st neuro visit with her and my dad two weeks ago. She started showing symptoms as early as Dec 2005 but her voice started "going" in Feb 2006. The doc wanted to rule out myasthenia gravis and B12 deficiency before settling along the lines of ALS. The blood tests for those came back today as negative. It was pretty apparent to me at the appt 2 weeks ago that he was leaning towards ALS, altho I know my folks were hanging on the hope of one of the other two possibilities.
So, that's what brings me here. I don't even know exactly how to describe what emotions I am feeling as they are so all over the place. I hope I can get some help with others who are in my spot. I will appreciate anything anyone wants to share with me at this stage of the "game".
Thanks...
 

hboyajian

Distinguished member
Joined
Oct 31, 2006
Messages
267
Reason
Lost a loved one
Country
US
State
Washington
City
Vashon
I remember very well my dad's initial doctor's appointments when they were considering the possibility of ALS, and the desperate feelings I had. I made a long list of all the diagnostic tests that needed to be done to rule out other potential illnesses. I went in ready to fight for any test they had left out. They were going to have to PROVE to me that ALS was the final diagnosis since there is no definitive test to identify it. Thankfully, the doctor (who was a Physiatrist, or physical medicine doctor) was very thorough and was able to present and explain all of the results. All my doubts dropped away as we saw that blood tests were negative, the brain MRI showed no tumors or evidence of stroke, and I think it was the EMG that demonstrated evidence of aberrant neuronal activity. I cannot find all my notes from that appointment, or I would be able to be more specific. Neither do I remember all the other tests that were done. She made it clear that there was both upper and lower neuron damage and explained how the damaged neurons attempt to regenerate their connections to a muscle and end up creating many weak attachments to it which then fire irregularly and frequently even when the person is not attempting to move that muscle. This results in fasciculations, which she showed us in my dad's arms, legs, neck and back. His muscles were making little quivering jumps all up and down. Upon seeing this, I realized that all my energy spent in fighting the diagnosis was over, and I needed to shift to learning everything I could to understand the illness and help my dad cope with what was to come. We were referred for a second opinion and continuing care at an ALS/MND clinic. If you are still in the diagnostic stage, I do think it is important to rule out all other possibilities, as it sounds your mom's doctor's are doing. They will most likely refer you to an ALS clinic if there is one in your area, since it is a rare illness and the people who specialize in it can provide you the definitive diagnosis and necessary resources/assistance with symptoms and disability. I know how emotionally wrenching this stage can be and hope I have been of some help as you go through this difficult time.
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Hi NSmith and welcome to the forum. I know you must have a million questions and all kinds of mixed emotions. If it helps, we have all been there whether having ALS as I do or as many others on the forum are care givers.

Feel free to jump in anytime and let us know your thoughts, worries, etc. and we will do the best we can to help you feel at home and answer your questions.

God Bless
Capt AL
 

nsmith555

Active member
Joined
Feb 27, 2007
Messages
67
Reason
Loved one DX
Diagnosis
03/2007
Country
US
State
OK
City
Guthrie
Thanks!

Thank you both, Al and hboyajian for the warm welcome.

The little my folks will talk to me about this being als at this point, I know my mom is absolutely sure that she wants to see a neuro who has dealt with this if it turns out to be als. I'm in Oklahoma, and apparently there is one pretty close to where we live. The neuro she is currently seeing hasn't dealt with a case in over 10 years he said, so I'm sure he'd refer her to someone who has.

My mom's symptoms that I am aware of are tongue fasciculations, almost no understandable voice, frequent choking, excessive drooling and she's lost so much weight due to inability to eat much. She claims to have no weakness in her limbs, but there is noticiable limited flexibility/mobility in her neck and she's developed quite a noticable hump in her shoulders.

As I am their only child in the state, I am going to have to really gain as much information as I can to help them. I don't think my dad will do much research on his own and I'm prepared to go to every doctor's visit she has from now on.

I am one of those people who wants to know the worst case scenario so I can be as prepared as possible to deal with it. The rest of my family, however, is quite the opposite. Including my mother. So, I am sure I will be needing support to deal with understanding her and their reactions and ways of dealing with this.

I appreciate your responses.
God bless you both!
Nicki
 

midwestgirl

Distinguished member
Joined
Feb 13, 2007
Messages
101
Reason
Loved one DX
Country
US
State
IN
City
Indianapolis
HI Nicki! I am so sorry to hear about your mother. My mother was diagnosed with ALS in Dec 2006, however she was having symptoms much earlier. My mother has weakness especially in her left leg and is recuperating from a fracture in her right leg, ALS has most likely progressed to cause the weakness but it is not as noticeable in the right leg. In March 2006 I started noticing some slurring of speech, which has progressed to being very difficult to understand. She is currently on a Trans Derm patch to help secretions, which has decreased her coughing, and makes eating somewhat easier, but she is on a soft diet.

ALS affects everyone differently, and everyone progresses at their own pace. I think it would be wise to address your mom's weight loss as soon as possible. She may have to consider having a feeding tube. At this point, my mother is refusing to have one, although the doctor has recommended she think seriously about having a feeding tube. I am honoring my mother's wishes, but I am hoping she reconsiders. It is a big decision.

The ALS organization ( als.org) has some wonderful books, and information, they will send. I attend a local support group, which I would highly recommend, if you have one in your area. This forum has been a big source of information. Best Wishes
 

hboyajian

Distinguished member
Joined
Oct 31, 2006
Messages
267
Reason
Lost a loved one
Country
US
State
Washington
City
Vashon
Early on I decided that nutrition and physical therapy were 2 of the keys to remaining as healthy and functional as possible for as long as possible with ALS, or for that matter for anybody. My dad's doctor said that getting a feeding tube, if you were losing ability to eat and hence even more body mass, could make as much as a year's difference in life expectancy. It was advised to get the feeding tube early in the process rather than waiting until your body was weakened even further. While such a decision is difficult, and any surgery should be carefully considered depending on the individual's condition and age, it is probably best not to wait too long to make a choice. Of course, each individual person with ALS has to make many tough decisions. Those of us who love them sometimes have to accept with support and care choices that we may have strong feelings about one way or the other.
 

nsmith555

Active member
Joined
Feb 27, 2007
Messages
67
Reason
Loved one DX
Diagnosis
03/2007
Country
US
State
OK
City
Guthrie
Thanks for more great support and advice. I think my mother will be like yours, midwestgirl, about the feeding tube. I guess we'll see what the doc says and maybe they can be pretty convincing. I know any loss of things she used to be able to do is going to be so hard for her. I suppose that's a vastly normal response to all our loved ones dealing with this.

I am so glad I found this site - I can tell already how comforting it is to have others to talk to. There's strength in numbers, isn't there?!
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi nsmith555. Welcome. There is strength in numbers and it helps to have people that are living what you are living to discuss things with. The old cliche I Know How You Feel is somehow comforting when the people actually Do know how you feel.
AL.
 

nsmith555

Active member
Joined
Feb 27, 2007
Messages
67
Reason
Loved one DX
Diagnosis
03/2007
Country
US
State
OK
City
Guthrie
Yes, it is very comforting to know that others have been or are now also travelling that same road. My heart goes out to everyone who is dealing with this personally as well as caretakers. I always think that God allows us to go through trials in our life often in order for us to somehow help someone else down the road who finds him/herself going thru the same thing. I hope that there are people who gain peace and some kind of satisfaction and blessing knowing that they will be helping people like me now its my turn to go down this road with my mom.
 

Teej

Active member
Joined
Sep 28, 2006
Messages
39
Reason
Loved one DX
State
CA
City
San Jose
Hi nssmith555,

I am caring for my husband who has been faced with the challenge of ALS for the last year. His onset was more in his limbs and is just now beginning to affect eating and speech. His limb movement however, is almost non-existent. I agree with everyone that recommends the feeding tube. My husband can still eat, but since we did the tube, his choking has decreased 10 fold, because we can do his pills, vitamins and water through it, all things he choked on. He, unfortunately lost quite a bit of weight initially also...close to 60 lbs., which weakened him a great deal in the long run... Try to get her to do it as soon as possible, it really does make a difference. God Bless you as you look out for her...Teej
 

nsmith555

Active member
Joined
Feb 27, 2007
Messages
67
Reason
Loved one DX
Diagnosis
03/2007
Country
US
State
OK
City
Guthrie
Thank you Teej,
I appreciate the support and suggestions.
I read your post about your husband's pulmonologists visit. I just said a prayer for you, he and your family. I will continue to pray for you all.
Nicki
 
Status
Not open for further replies.
Top