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COlisa

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Thanks to all who responded to my original post about my husband getting initial diagnosis of 90% certainty of ALS last week.

We went to the neuro yesterday. Hubby had an EMG and it was normal! I quizzed his neuro for over an hour about all the tests for other diseases (he did tons of blood work to test for other diseases...Lymes + a zillion other things) that were all negative. We will explore even more now, plus continue to monitor with periodic EMGs as neuro still feels that symptoms are bulbar onset ALS that just hasn't manifested itself in the limbs yet.

The neuro said than in 100 cases similar to my hubby's that he has seen (bulbar onset, normal EMG) all but 1 progressed to ALS within about a year. The 1 exception is a woman who has gone 15 years without progression (...so statistically, I feel that he is due for another patient to follow this pattern :-D).

At a minimum, I feel that we have bought some time to explore diet & other options, plus be able to investigate ALS studies that are being planned & overall better prepare for what may lie ahead and, of course, pursue another opinion or 2.

Sounds like some of you have gone through something similar (JoJo?). I'm curious if you initially had normal EMGs as well? Did you have EMGs periodically to monitor? Or how did you eventually get the "final" ALS diagnosis? Anybody else at this stage right now?

Thanks for all the support. So glad this forum exists!
COlisa

Prepare for the worst, hope for the best.
 

dana

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All of dad's EMG and/or other tests came back looking good too (this was in March of 2005). My dad's neuro couldn't figure out what was wrong with him, so he sent him to the Mayo Clinic. They told him they thought he had early signs of ALS. We then had him tested at a different clinic for Lymes. We got a positive reading there, and started treating the Lymes. Needless to say, things continued to progress. It wasn't an overnight progression, but if you compared each month to the previous month, he was a little worse. Dad's onset is also bulbar. 3 weeks ago, he was put on a ventilator and trach. This is literally what snapped my entire family into believing the ALS diagnosis. I would recommend that if your husband get life insurance now if he has not received a "for sure" ALS diagnosis. If you wait too long, like my family did, you will not be elligible for life insurance. I know we put it on the back burner because if we got life insurance, we felt like that meant he had the disease and he was going to die...almost like we were giving in to the diagnosis. We have kicked ourselves in the pants now, but no need to worry about the past. I don't know how many EMG's my dad had, but I know that he has not had one in quite a while. Best of luck Lisa.
Dana
 

COlisa

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Dana,
So sorry about what your Dad is going through. An inadequate sentiment, I know.

Did he ever have an "abnormal" EMG? Does he show any loss of strength in his limbs?

Thanks for posting your experiences.
COlisa
 

dana

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I don't believe that he ever had an abnormal EMG. From what I know, everything always looked good. Although, he does have some confusion issues which is not an ALS symptom. In my opinion, that is the Lymes effecting him. Before he was admitted into the hospital over 3 weeks ago, his limbs were all working very well. He had full use of both his arms and legs. He did seem like he walked slower, but I think it was because he was not getting a sufficient amount of oxygen, and his carbon dioxide levels were extremely high. Since he has been in bed for most of the 3 weeks he's been in the hospital, he has gotten weak. But, this would happen to anyone who had to spend that amount of time in a bed. He is up and walking around pretty good, but it is slow and cautious. It makes all of the ICU nurses nervous seeing him walking around with a ventilator. It appears though, that all of his limbs are still working well. We will hold on to that for as long as possible. I have really come to realize how important the little things are.
Take care,
Dana
 

Granny

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Hi COlisa,
My symptoms began in the fall of '03. By January '04 I had a lot of twitching in my tongue and my speech was slurred. The neurologist suspected ALS and did an EMG. That was normal, so he would not say for sure that I had ALS, but suggested I get a second opinion. In April '03 I went to another neurologist who said I had bulbar ALS.
In the fall of '04 I had a second EMG and it showed a very small amount of abmormalities. I have not had an EMG done since that time.
I have lost my speech and most of my swallowing. I have a feeding tube.
Until just this past Christmas "05, I did not have any symptoms in my limbs. I was strong and flexible. I now have weakness in my neck and in my left hand. It is getting hard to button buttons, etc, fine motor skills.
I feel quite good and do not experience fatigue or weakness much at this time.
Hiope this helps you sort things out, but as many people have said, every person is so different it is hard to compare.
I am glad you are here on the forum. My husband is my caregiver and he is wonderful to me, but I realize the stress on loved ones that this disease brings. But, it is a time of growing together and good times with the bad.
Love, prayers and hugs,
Leah
 

helper

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does bulbar onset mean a different progression rate? This disease is so frustrating, you want to find out all you can so that you can prepare but....
For my mil it was her slurred speach then she would choke on food...lost a tremendous amount of weight and was finally given a PEG. She's slowly gained weight but has no energy and dozes in her chair all day.

helper
 

John1

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helper said:
does bulbar onset mean a different progression rate? This disease is so frustrating, you want to find out all you can so that you can prepare but....helper
Helper, this question has been batted around over the years since I started following ALS with my own diagnosis. Here is one reply to a similar question by an "expert".

SUBJ (07/03): LIMB VS. BULBAR ONSET

My 61-year-old wife was diagnosed with amyotrophic lateral sclerosis (ALS) nine months ago. She was teaching and working three months prior to that time. Her first symptoms were slightly slurred speech, and bulbar ALS was diagnosed, which was confirmed by second opinion. Three months after her diagnosis, my wife was no longer able to communicate by speaking. Three months after that her ability to walk, left leg, and her balance were affected. Now she has great difficulty eating, swallowing and a feeding tube is the next step. Increasingly she has great difficulty in going up and down our stairs, and we will have to move from our home shortly. Do patients with bulbar ALS progress differently, more rapidly, slowly than those patients who incur symptoms in other parts of their body first?
REPLY from MDA: Tahseen Mozaffar, M.D., Co-Director, MDA/ALS Center at the University of California, Irvine, Orange, CA

Bulbar presentation of amyotrophic lateral sclerosis (ALS) is much more common in women. We don't understand the mechanism. In some cases of bulbar ALS, symptoms remain localized to the bulbar region for some time, but once it starts spreading to other regions of the body, the rate of progression is similar to generalized ALS. On an individual basis it is very difficult to predict how any one individual will do.
 

dana

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Hey helper,
From a lot of the things I have read about progression of bulbar vs limb onset, it seems that bulbar onset progresses faster than limb onset. I know that with my dad, it progressed to the point of needing a ventilator and trach within a year and a half. Not fun. But, we are hoping that with the vent/trach, he will be able to live many more years, and live happily.
Dana
 

John1

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Dana,

Sadly, 18 months from diagnosis to death or vent is about average. I don't think your Dad's case is evidence that bulbar progression is faster than limb onset.
 

helper

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question...when you say 'diagnosis' does this mean when the drs decided it was ALS or when you look back and you see the symptoms were earler? for my mil they thought she had a stroke in the summer of 2004 when she was getting slurred speach.. she was diagnosed in Nov 05. She too was told that she's 'doing well' ...she's a strong woman who is having a very hard time losing her independence. A once very active woman in the community now spends her days in her recliner....breaks my heart. Is there any suggestions to help her want to see her best friend again? this friend calls me and keeps asking me if she's ready yet. My mil says that she's self concience about her constant drooling (she was just given a new prescription to help with this hopefully)...as much as i tell her that we love her and so does her friend and we just want to be with her...i hate to see her hide away but understand she does need time to let this all sink in...should i just back off? I'm so glad she's decided to move in with us and she's getting anxious too..

helper/jodie
 

Al

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Hi Jodie. We usually mean when the doctors first say that you have ALS that is your diagnosis date. Some of us can look back and compare symptoms and mistakenly think we've had it a lot longer than we actually have. Hopefully your mil will be better on the medication. A little gentle prodding once in a while to get her out is probably a good idea. It is very easy for serious depression to set in if you just stay in staring at the walls and thinking how bad you are. Trying to get her to do an activity that she liked might help as well. Hopefully spring is coming soon and she'll at least be able to get outside.
 

helper

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I'm so looking forward to the Spring..those sunny Spring days are great for taking a drive, a real pick me up from the winter blahs. I will definately be encouraging her to do some of her favorite things
thanks
 

A Daughters Love

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Hi Jodie,

My Mom's spirits really picked up after she moved in with us. She now lives for her grandkids, and that's o.k. by me, as long as she happy. She too does not like to go out to much. We found she is more comfortable having people into the house to visit. She is in her comfort zone at home. I know mom being around my children is really what is helping her get through this horrible disease.
I understand your questions about progression, as I have the same questions everday! I hate not knowing what everything means. Everytime I see something change with Mom I wonder" what does that mean now? She has started to have some respiratory problems ,weak cough, choking, quite voice, and I wish someone could tell me how long she has left, but I don't think they can, as everyone is different. Everyday there are questions I wish I had answers for. If I had them I would definitely share them with you!

I think it's wonderful what you are doing for your MIL. I know how lucky I am to have a husband that was willing to welcome my mother into our home.
 

John1

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Hi Jodie,

I agree with all that Al wrote including what I meant by diagnosis, i.e. by a trained professional. The fact that your MIL had symptoms for about a year and half before diagnosis is a good sign and suggests she may have a fairly slow progression. As AL says, depression is a real danger with ALS and many PALS take anti-depressants. You can search for threads on that topic. If you feel she is depressed, and her behavior hints at that, you might encourage her to see her regular doctor about it. Depression can be serious if left untreated. If she is depressed, there are alternatives to drugs including counseling. I would continue to urge her to keep contact with her friends and family. On line support at sites like this are also helpful if she is at all computer savy. They have the advantage of being safe and anonymous so it might be a way for her to begin to reach out. Just talking to others in a similar situation can be therapeutic.

-John
 

Al

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Hi John. Just sitting here wondering If John 1 has any biblical reference or was just John taken?
 
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