Feeling too good to have ALS?

[Will]

Hi,

My PALS was diagnosed 11/11/10 by a prominent neuro-muscular neurologist in PHX after experiencing leg weakness and fasiculations. He was put on Ritulek.

We got a second opinion about a month later and a second EMG by the head of the ALS Foundation Clinic in PHX. He concurred with the first doctor.

We got a 3rd opinion a month after that by the head of the MDA/ALS clinic in PHX. He also said we have MND/likely ALS, and invited him to participate in his clinic and a upcoming clinical.

The problem is that He feels pretty ok. He walked 3 miles today without anything but normal tiredness. Yes, he still has the fasiculations, but he did not experience the severe weakness that first brought him to the Doc in the first place.

He is starting to feel guilty about getting his Long Term Disability Insurance from work(it starts next month), since he feels so good. The only problem seems to be mental---coping with the diagnosis, and the guilt about taking money from the insurance.

My question is....is this consistent with the early stages of ALS? or what!

It is very confusing at this point. We don't know if the other shoes just have NOT dropped yet,,,,or somehow is the diagnosis of 3 prominent DOCTORS wrong?

Any insight?

 

[TedH5]

I can relate...I was diagnosed last August and also had a second opinion that verified the diagnosis. I am going to the ALS clinic at Emory University and participating in their research trials. Early on I would occassionalyy question whether I had it because I felt so good. As a matter of fact I just know stopped working this week. I can tell you that I go in every month for research visits and the muscle strength numbers continue to deteriorate. If someone just walked in and met me for the first time they would never guess I have ALS. I do use a cane but not all the time and not around the house usually and just started using it recently to keep my leg from getting fatigued. I have come to the conclusion that A) I caught the symptoms early and got the diagnosis early (it only took a few months for me) and B) that fortunately my progression is slower then average. I know that while my changes are subtle they are there, I can gradually feel them and they are measurable at the monthly research visits. While at times I feel guilty my over riding feeling is that I am lucky.

Feel free to reach out to me anytime with questions.

 

[Twinsmom]

To answer your question, Will- from everything I've read and researched, every single journey is unique, HOWEVER You and Ted both sound like your symptoms are similar to my husband's but he still is MND-unspecified. The neurologists state that he is lacking the UMN symptoms, but he is weak (than is his usual strength), fatigues easily, has the cramps/fasics, abnormal EMG/NCT. Has done every test imaginable (all negative) to rule out any other possible disease...He has recently been given a tentative diagnosis of Progressive Muscular Atrophy (PMA). (We've been on the diagnostic journey since July 2009. He also uses a cane for extended activities or when he knows he's going to be up & down-it's been helpful for balance issues. Unless you know what's going on, or are with him for any extended time, you wouldn't know anything is wrong with him either.

Prayers to you both,
Melody

 

[ivar]

I always thaught if you got weakness it would just got worse and worse if you had Als and not change to the better ?

 

[TedH5]

That is true there is no getting better. What I can tell you is that with my experience the more tired or fatigued you are the more exasperated your symptoms are. So while I can walk but have leg weakness (know in both legs) the more tired I am the more difficult it is to walk. If I get a good night sleep and a nap and do not over exert myself then my symptoms are steady througout the day. However if I over exert myself the symptoms become worse and I become fatigued much more quickly. Other PALS may have different answers but this is what I experience.

 

[brooksea]

My husband worked for six months after diagnosed. He has progressed slowly (I suppose) and now his condition has deteriorated rapidly. So, each pALS is different.

If three prominent neuros say he has ALS, I would accept that and get on with living life as much as you can together before you can't.

 

[sadiemae]

My husband's onset of ALS was probably around Oct 07, but we didn't go to the doctor till Sept 09, and he was diagnosed immediately. He worked a very physically demanding job till Dec 08, when he was laid off, and he has so much pain now, probably because he worked for so long with undiagnosed ALS. His back and neck muscles are trashed because of this. Enjoy the slow progression, eat all your favorite foods, and do all you can now, because you have no way of knowing how long it will last.

 

[halfin]

Read my story of feeling too healthy for ALS after I was diagnosed:

https://www.alsforums.com/forum/people-als-pals/9397-cant-believe-i-have.html

Now a year and a half later, I can't walk and can barely stand, barely speak, eat via PEG, and type with one finger. A slow start doesn't mean slow progression, unfortunately.

So I'd advise your guy not to feel guilty about being healthy with an ALS diagnosis. ALS is a very bad disease, and it sounds like the diagnosis is solid. I wish I had done more when I was healthier. Chances are in a year or two he'll be very glad he took this time off.

 

[KC2U2]

So sorry for his diagnosis and can't blame either of you for hoping it's wrong. Since my first symptoms, I have never really felt bad. No real pain, no cramps, no shortness of breath - just the frustrations of not being able to do what I used to be able to do. Take advantage of this time you have now, do the things you love, live and laugh and hopefully you'll have many more years to share.