When will we KNOW?

[Twinsmom]

This past summer, my husband was "verbally" diagnosed with ALS. The diagnosis came out of the blue, being referred to the neurologist by a pulmonologist who noticed his "fasciculations" in his calves-which he's had for over a year. Cramps had gotten worse, but we didn't really think it was anything, other than dehydration/diet. We went to a neurologist who ordered the EMG/NCT tests. Tests showed damage in 30 of 31 sites tested. When the neurologist told us he thought it was ALS, you could have knocked us over with a feather! Who gets ALS!?

Of course we began the journey of ruling out anything else it could possibly be, and the ALS specialists don't want to "call it ALS YET"...because he's still so strong * (relatively speaking)
Apparently, the doctors don't typically see someone with ALS "this functional" or "this early" in the course of the disease. We've been to 2 ALS specialists (UM & Mayo Clinic) and ruled out everything else it could possibly be, and have, at the end of this been told his symptoms are "suggestive of ALS", but they need to observe him over the next several months.

Having the diagnosis thrown out there, and now having doctors retreat has been incredibly frustrating and confusing. I watch my husband struggle with carrying a 24 pack of beer into the house, and not be able to "feel his legs" after being on them for more than 3 hours at a time at work. We haven't told our children yet, my girls just started college and our son is only 8...but, really, what do we tell them?

Anyone else gone through THIS bizaare journey? How weak, is "weak enough" before they will formally diagnose him? He's also an Air Force Reservist who works full time on the base as a civilian and has served in Iraq 3 tours over the last 5 years, and I've learned we should go through the VA if/when he is diagnosed, but I don't think we can until there's an "official, documented" diagnosis...

 

[halfin]

Hi Melody - I'm sorry you and your husband are going through this, but welcome to the forum, you will find many others who have faced that same period of confusion and uncertainty. I know it is hard, but keep in mind that the doctors must be thinking that it is possible that your husband has some other condition. Many of these other possibilities have much better prognosis than ALS, so in a way it is a good sign that they don't want to diagnose him yet. I don't want to raise false hopes, but it sounds like you are seeing excellent doctors and I'm sure if it were a clear diagnosis, they would have told you. I was very functional when diagnosed, in fact I ran a half marathon a month later (and paid for it) so by itself that does not prevent a diagnosis. There is still the possibility for good news, and hopefully you can find some comfort in that, even amid the frustration and uncertainty.

 

[BethU]

Melody ... Hal wrote excellent advice. If the doctors have not made the call, that means they're not sure. No one wants to say for certain it's ALS if there's any possibility that it's not ... and obviously, in your doctors' minds, that possibility exists.

It will take all your strength to get through this period of uncertainty. Bless you and your family for your husband's service to the country. I wish I could offer more than my prayers and "take it one day at a time," but that's about all there is.

Hang on and please let us know what's happening.

 

[Twinsmom]

Thank you both for your encouragement. Our neurologist says they're "fairly certain" but want to take the time to watch his progression, as it seems a bit "slower than usual" for ALS...The work up at Mayo clinic basically ruled out any other possibilities, and we've even had him on a anti-seizure medication because, as our neurologist said, "if it worked, it would rule out ALS..." it didn't work, and he was just taken off it.

We are trying to find the blessing, which right now, is that "the white noise" of life is gone, and we are thankful for each day. He's an amazing man, and love of my life. With his dark sense of humor, has begun his "bucket list" which we are beginning to tackle one at a time.

My heart breaks watching him get so frustrated at how easily he gets wiped out, and at the little things he can't "do like he's always done." I've worked in health care for over 25 years, but the only thing I know about ALS, is the end stage, which...I really don't need to focus on right now. But, truly have no sense of what to expect or how long he'll be able to be active. It's all such a surreal journey.

Thanks again, for your encouragement.

 

[Zaphoon]

Melody,

I'm sorry to hear the neuro's are thinking ALS. You guys are fortunate in one thing, if it turns out to be ALS, you've found out very early in the disease process. Most people are at least 20-50% into it before they are diagnosed. This is because of the time it takes for rule-outs and for it to become just about obvious.

By now, you've probably pretty well educated yourself on what the disease can do and how it can progress. Staying a step ahead of it is the key.

There is still some hope it may turn out to be something else.

Regarding the V.A., I'd get him in with a V.A. neurologist if you haven't already. A V.A. neuro was the 2nd to say I have PLS. At some point, the V.A. is going to have to agree or disagree with any future diagnosis. Anyway, I've had a very good exerience with them and continue to do so.

Zaphoon

 

[GlenBrittle]

Hi Melody,

As said above , it takes time. Its been said that a ALS diagnosed means ruling out everything else first.

My journey took 15 months for the DX.

Glen

 

[Twinsmom]

Thank you for your thoughtful words and encouragement.

Do you mind if I pick your brain a bit?...it's so hard not to make every single "symptom" into "it must be your ALS/CFS..." BUT, he is having new symptoms- do any of these sound familiar from your experience? (I KNOW...everyone's journey is different-I'm not going to turn your response into gospel, promise:smile:

1. Recently, he was at work, driving a truck to load equipment; when he was called at to stop the truck, his leg didn't move right away. He said it took 1-2 seconds before it actually responded to his own "mental process"...it caused an accident-fortunately noone was injured.

2. He is very fit and active in his work, and has ALWAYS been able to do 60 pushups-he's done them periodically, just to make sure he's still "in shape" He did his own little 'test' the other nite, and could barely do 30...

3. He gets a "numb" sensation if he's on his feet more that 30 minutes-has to sit down and rest.

4. Once he's resting at nite either on the couch or in bed, his legs are doing these involuntary "jerks"- Strong enough, that they are keeping him up at nite.

Are any of these symptoms you went through early on? Thank you so much for your patience and support. I hope I'm not asking you to divulge more than you're comfortable with about your own personal journey!
Peace,
Melody

 

[halfin]

Hi Melody - 60 push-ups, wow - your husband must be very strong. I could do about 30 at my best. As recently as July I was doing 25-30 every other morning, and now I don't think I could do one. No, actually I just tried, and I could do two regular push-ups. Had some trouble getting up from the floor afterwards.

One good thing is that if you start strong, then if you do have ALS, it takes longer to get to where you are having trouble functionally. So hopefully his strength will be an asset to your husband if necessary.

ALS hits everyone a little differently. I'd say from what I've read that your husband's problems are within the range of what PALS experience. Most of those things sound like muscle weakness. Twitches and jerks are common too. The thing to watch out for is whether the weakness is progressing. It's not usually considered good to over-exercise a weakening muscle, so I would not recommend frequent push-ups. But in a week or two he could try again, see if he can still do 30 or if the number has gone up or down.

 

[stephie]

Melody-
Your husband's symptoms sound very much like my husband's. My husband was also a very strong man, so the doctor did not realize how much muscle had already been lost when we first visited the ALS clinic. My husband's earliest symptoms were times when his legs and feet just "didn't feel right." He would always be surprised when he missed a step because his feet did not respond as quickly as they should have. He was a gymnast in his younger days, so he had always been very strong and agile.

It's funny you mentioned the "push-up test." My husband did the same thing! He used to do about 50 push-ups each day. He worked so hard in the beginning of his diagnosis to keep his strength. He finally realized that there was nothing he could do to keep the muscle he still had. He learned to save his strength for more important things, like playing with the kids or going for a walk.

My husband did not experience any of the numbness you described, but the twitching in the legs was very strong at first. As the muscles got weaker, so did the twitching.

I truly hope that the doctors come up with a diagnosis other than ALS, but please know that there are people here to help if you do receive the news.

 

[indigosd]

"Tests showed damage in 30 of 31 sites tested. When the neurologist told us he thought it was ALS, you could have knocked us over with a feather!"
Melody, one of the posters said, "if it walks like a duck and quacks like a duck...isn't it a duck"! I am assuming that he had all of the usual diagnostic tests done like a MRI, EMG,NCS, LP, blood work for heavy metals and EBV-right? My Husband started with noticeable symptoms last December and refused to go to the Dr. I finally got him in on his birthday [June 1] with our family Dr., MRI the next day [negative], appt with ALS Neuro the next week-all the other tests done at that visit and went back in 3 weeks and given the diagnosed. They offerred us the choice to go to Mayo for a 2nd opinion which we refused. Once was bad enough for us we didn't want to stand in that line again. I am GLAD that it was diagnosed ASAP. In my opinion, the diagnosed is the easy part, it is all the stuff after and fighting tooth and nail to get some help that is so horrid. This is why I think it is better to get the diagnosed asap: with the diagnosed you can apply for short term disability from work and start the process for SSDI which takes 6 months, my Husband went on a Medical Leave of Absence immediately! I will always be so grateful for these moments with him. :] Also, please research all of the information online about ALS and the Military! When I read this, "He's also an Air Force Reservist who works full time on the base as a civilian and has served in Iraq 3 tours over the last 5 years, and I've learned we should go through the VA if/when he is diagnosed, but I don't think we can until there's an "official, documented" diagnosis... " RED FLAGS BEGAN WAVING! We are i n the long process of applying to the VA. Did you know that there is a significant increase of ALS in all Veterans?! My intention is not to frighten you but to make certain that you educate yourself so that you can be an empowered advocate for your husband and your family. I sincerely hope and pray that it is anything but ALS. I agree with you, what is the point of waiting..?

 

[Twinsmom]

Thanks again, to the new comments. It really does help to wade through this rather surreal journey and have people who are living a similar one. Yes...we have done and continue to do all the tests. He's getting a PET scan, even though nothing showed up on the MRI, or blood work to indicate possible tumors/cancer "just to make sure"- and has done all the blood work for heavy metals, EBV etc...

He'll be getting a follow-up EMG/NCT when we return from a family vacation-going on a cruise!

Because he's so fit, reporting the change in strength usually gets the response of "well, 30 push ups is great!" When your baseline of "normal" is different, it seems to throw everyone off, and not want to give us the ALS diagnosis-which I understand. One of our neurologists said it's unusual to diagnose-and even to see in the office- "this early".

We continue to just focus on the day, and try to not make every single "symptom" about ALS, but it's hard. Pretty surreal to actually hope for a diagnosis like cancer, but at least THAT is treatable. It feels like it will be easier to settle into "living with ALS", once we have a diagnosis. Now...we're just having all these symptoms with no answers...ugh, I hate this limbo.

Thanks for letting me vent!
Have a Blessed Thanksgiving!

 

[indigosd]

I was PRAYING that Web had a brain tumor! Did you look into the Veterans stuff? Enjoy the cruise and I want to hear all about it when you return!

 

[Katie C]

Melody, I hear you on the baseline being different. Because Glen's been a marathon runner, his strength level started out very high. He was also exceptionally bright, and what we see as massive changes, the medical people see as "oh, you really haven't lost much yet." Does kinda make you want to smack your head against a wall sometimes.