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My husband stopped working in Dec '08. The cramping started in his left leg near the bone. It spread and quivers started. He now quivers almost all the time . It has reached his facial muscles. Seems to have gone from his lower body to his upper body. His feet feel like he has flippers on. His hands feel like clown hands says he. His body started jerking uncontrollably. He was diagnosed with fibromaylsia by a neurologist that we have since learned wasn't very good. He has now been through the whole gammet of testing the last being a spinal tap. We have gone to 2 neuro surgeons and 3 nuerologists and a reumatolgist. The doctors say you don't want to be an interesting case and that he is one. He is now taking B12 shots and they seem to help. His jerks are not as vilent and not as often. His muscle spasms are still going on but not all the time. He still feels like he is dying he says it just doesn't feel right (hard to explain). We get the results of the spinal tap next week. Doctors have talked like it is ALS but have not been willing to confirm it as of yet. We believe it is. But are holding out hope it is not. What does it sound like to you?

The jerking and quivers don't sound like ALS but if they are expecting it is then I don't know what to say.

ALS did not start this way for me and never presented those symptoms.
I pray it turns out to be something different and treatable.
Take care!

Welcome to the forum but sorry you have to be here.

Thank You for your input. His B12 was very low and his body can't absorb it. He has to have monthly injections now. The neuro. was a bad doc. Just wanted to give us a diagnosis, take our money and get us out of there. He didn't think we would question his diagnosis. He says he thumps on the inside all the time. The neurosurgeoun said he has nerve damage and he would only get worse but couldn't tell us what it is. If we don't get answers from the spinal tap then doctors are sending him to mayo's.

When did his symptoms start?
Did he have an emg? If so what was the results? How is his clinic exam, reflexes, etc.
When you say quivers do you mean tremors?

The violent jerking does not sound like ALS.

We just got back from the neurologist. It was confirmed that he does have ALS. Where do we go from here? What steps do we take next? When do we start making adjustments on the house. I realize we need to get a wheelchair before he needs it so he can be used to how to manage it. I am trying to think ahead, be as prepared as I possibly can be. He needs to get his living will in order. I just don't know where to begin. Take one day at a time ,make the most of it and stay positive. I keep repeating this to myself and him.

Don't rush into anything, just take a few weeks, or months, to get used to the fact that ALS has been diagnosed. Try not to worry and give yourselves some time. Sorry you have this diagnosis. We are here for you!

Thank You!

Hi 1dingo,

So very sorry for your husband's diagnosis. As Joel says, give yourself some time.

What you can do now is to register with the ALS Association and the Muscular Dystrophy
Association- ALS Division. Their websites are: www.alsa.org and www.als-mda.org.

You will find a ton of information, and can even have materials sent to you free.

You can find centers and clinics that might be close to you as well, on these sites.
There is one at St. Louis University Health Sciences- don't know if that is close to you.
On the MDA site, you need to enter your zip-code to find the closest one.

Ask to be referred to one of these specialized ALS clinics for treatment and management.
They will take good care of your husband AND you; they help with all those things, like when to get equipment and where (many times they get it for you and send it out!)

You will also find great tips and additional info here that I have found invaluable.

Give yourself time to take it in, to process, to cry- and , I promise, in time you will smile and even laugh again.

This is something so hard to accept. To fully grasp the fact that you only have a few more years to live and that I only have a few more years to hang onto my "hope diamond". ( we call our love the hope diamond because it is so real and so rare) I have realized and could never really put into words that we are all living on Gods time. It's odd you would think my faith would have slid due to all this but in fact it has increased. I've learned in this short time to praise God for the good things in my life and those that are close to me. To praise him when things aren't going good because He does have a plan. It's just bigger than me or my capacity to understand. Thank you for the advice. I will do as you suggested today. The saying don't wait to do what you can today tomorrow is so true. Any advice or suggestions are greatly appreciated.

Don't assume you are going to be dead in a couple of years! With the right attitude and help you can live a very long time, it is up to you. A lot of PALS have decided to not listen to the doctors time frame and are living well into double digits. Beat the odds, I am.

Hi, 1dingo-

I think in general when people are given a potentially terminal diagnosis, all you focus on is the "terminal" part. The shock and fear is overwhelming! It is understandable.

When my husband was first diagnosed, I could barely function. I remember being in a grocery store and having a "wave of fear" overcome me, that I just left the cart and went home. I have never experienced this before, and I imagine it was a panic attack.

What I have learned, as so many people here have said, is to focus on the present.
This has to be a very conscious choice. It is very hard at first, and it does not mean you won't have your sad days, but for me, it is no longer sad days- just some sad moments of a day. And, those moments are less frequent.

You are already experiencing this with your faith, and this gives me great strength as well. It may be a cliche', but as others here say- it is not dying of ALS but living with ALS!

Read over lots of the old (as well as new) threads; you will find so much inspiration and courage from those here. It is contagious!

Thank you all so much for the words of encouragement and advice. We are having a very hard time getting organized and taking each day as it comes and appreciating it. We seem to be dwelling on what is to come. Getting past that is so hard. (Especially for my husband). I keep trying to be positive for him. Pushing him to think of today not tomorrow. Trying to keep him busy. I am second guessing what I should be doing. He doesn't know what he should be doing. Other than worry about his children and me.

1dingo,

Antidepressants are helpful after the diagnosis. Probably you both would benefit. The shock will wear off after a while.

Did you go to an ALS Clinic?

Good luck to you and your family!

We have not gone to an ALS clinic as of yet. However we have decided to go to a muscle and nerve sub-specialist. We just feel like we need to hear it from someone with more skill in diagnosing this type of disease. Not that we don't trust our nuerologist. She is very good at her job. She was very good to us. But one more opinion won't hurt either. Maybe they read things wrong. Who knows! My understanding is that the specialist can direct us to the proper places to seek help and understanding if they agree with his diagnosis. I pray it is not ALS. But in reality.......

Is your nuero just a general nuero? I am suprised at the fact that she didn't suggest that you get a 2nd opinion from and ALS specialist
and recommend one. With a diagnosed like ALS everyone gets a 2nd, or 3rd opinion.