Third Opinion

[LifeEnthusiast]

Sorry for the absence of late. Just been trying to process.

I returned to my neuro at the ALS clinic earlier last week. PMA it is definitely not. In fact, he feels it is upper motor neuron dominant-ALS but won't make a final diagnosis just yet. He brought up Riluzole and said we could wait a few months until he was ready to make it official but if I wanted he wouldn't be the least bit opposed to having me starting it now.

I have opted to wait for the moment. In July he redid a host of tests that had been previously done repeated times when living abroad. They came back negative then and have come back negative since. We did more tests last week and looking at my online records, I can see that so far they are coming in negative as well.

He is having the neuroradiologists study all my brain and MRIs once again to doubly sure that nothing was missed but isn't hopeful.

So back in sort of limbo land I guess. At this stage I just want this diagnostic process to end. I thought It had and made my peace.

I made a decision last week to stay here permanently, mostly based on the neuro's clinical notes that I read on online where he states again that he isn't prepared to make the diagnosis 100 per cent yet but believes that it will be the final diagnosis. Frankly, I don't disagree. We have ruled out everything possible under the sun and the progression continues.

I turned in the rental vehicle, bought a car and I am looking for a place to live permanently.

I don't have to return to the hospital for two and a half months unless I start to experience worsening breathing or worsening swallowing issues.

So the new chapter begins sans husband and back to waiting for the final stamp of (dis)approval.

And that's all folks.

 

[lgelb]

Sorry to hear the news, LE. You have been through a lot. As I'm sure you know, UMN forms that stay UMN have slower progression. I'm sure our Canadian contingent, especially, will have lots of tips for you.

Best,
Laurie

 

[LifeEnthusiast]

Thanks Laurie. At this stage I am trying to get my head around the fact that I went from a PMA diagnosis to this. And strangely, while no one wants a diagnosis of any form of MND, I'm frustrated to be back in this diagnostic stage where I have to once again find a mental balance between hope and expectation/acceptance.

We have nothing left to test. Nothing. Yet everything goes back to be somewhat unclear in terms of diagnosis requirements. Strength grades in a number of muscles dropped from threes to twos. Normal strength muscles have dropped to fours. It's not stopping.

I don't think the runaway (ex) spouse is helping my mindset. It s been quite a year.

At least hunting for new digs gives me something positive to look forward to.

I'm not even sure if I should be on this forum anymore now that I am back to the "we're pretty sure but can't say for certain" stage.

Roll on 2016. It's been quite the year. And whether or not at this moment I belong here, I am sure thankful I am here. This forum with all its amazing people has been my sanity saver.

One day at a time.

Cee x

 

[Nuts]

LE, of course you belong here. I wish I could say you don't, but until that miracle happens, you're part of the family.

There is a special place reserved for spouses who runaway from something like this. You, on the other hand, have been selected to pay any dues you owe in this life (at least that's the way I like to look at it--if you must go through hell on earth through no fault of your own, then you should be earning points towards angels wings at the same time. Limbo is it's own special hell, and I'm so sorry that you are back there again.

 

[lgelb]

Cee, I guess I was reading your first post the opposite of your 2nd -- that you were now taking the "most likely to be MND" part over the "everything is uncertain" part. There are always several people here, who are over the threshold but their docs are still being more semantic than sensible. So I took your first post as basically, diagnostics are done.

So if I jumped the gun as you see it, I'm sorry, but your statement about continued quantitative loss of muscle strength without another differential on the table pretty much says it all, as does an offer of riluzole. And if there's any place worse than a PALS forum, it's infinite limbo. So come through the door, as Becky says. You've arrived. You're here. Grab a chair.

And the best things I can say about that...are (1) we're here with you, and (2) you've got white space with decisions (where to live being a big one) to fill about the rest of your life. By your handle, you aren't going to hide yourself in that white space, so grab a paint brush, is my suggestion.

 

[Vincent]

Sort of in the same boat except with predominantly lower motor neuron issues. But neuro says it usually works into full blown ALS. Just kind of holding my own for now. The biggest issue right now is fatigue. Getting a second bipap to use during the day and we'll see if things improve.
Vincent

 

[Green Queen]

Oh Cee, what can I say?
I'm glad you've made the decision to stay. Not having everything in limbo must be beneficial to your mindset.
House hunting can be fun, although don't forget to take some photos of doorways, steps etc so you can have a proper think about what can be altered if need be. Unfortunately the practical may take some of the excitement away!

I get it that doctors want to be positive before they commit. I thought for a few months I 'probably' had MS. As my GP says, if the Neuro at the top of his field gets it wrong, there's no where else to go! Doesn't help though, this unsure stage.

I have been very out of sorts this last week, my 'do or die' appointment is next week. I'm so afraid they will say they still don't know. It's not a nice feeling, so I really really feel for you at the moment.
Is UMN predominate ALS similar to PLS? They have all these fancy terms...

Two and a half months sounds like a long time and probably feels like it will be a long time. We are with you, during this waiting period and beyond.

Take care, my dear friend, love you heaps, Janelle xxxx

 

[zoohouse]

See, of course you are welcome here. Having a runaway spouse is bad enough without some ugly disease. I am so sorry that you have to go through either. My first husband left 5 days after my brother's funeral, and I had spent the last 3 months of his life working and caring for my brother. It was a pretty dark place for me but brought me back to my faith in Jesus, and I haven't looked back. Tim and I married just over 4 years ago, and he was diagnosed 1 year after we were married. I know we were brought into each other's life for a reason, and I don't regret it for a minute. He gives me every bit as much as I give him even though he is totally debilitated now. I hope you find a really nice place, just make sure it is totally wheelchair accessible. There are a lot of really good suggestions to make life easier, and keep you independent as long as possible.

Paulette

 

[affected]

I made a decision last week to stay here permanently, mostly based on the neuro's clinical notes that I read on online where he states again that he isn't prepared to make the diagnosis 100 per cent yet but believes that it will be the final diagnosis. Frankly, I don't disagree. We have ruled out everything possible under the sun and the progression continues.

So the new chapter begins sans husband and back to waiting for the final stamp of (dis)approval.

And that's all folks.

Cee where would you go if you left here? No one else would understand!
I may be a kind of limbo, but it seems like there isn't a lot of room for doubt. I wish for you there was, but then it would really be limbo.

Stick around, hey you can always give us the flick later if you are cleared! :lol:

Your ex is a jerk, never worry that he will live some wildly happy life.

You are doing the best thing by concentrating now on your life xxx

 

[LifeEnthusiast]

Wow. What a wonderful loving way to wake up this morning. Thank you all so very much for making me feel welcome and reminding me that I do belong somewhere -- here.

Laurie, you didn't get it wrong. I just worded things wrong. I feel like things are uncertain. I like absolutes. I like absolutes even more now. Self analyzing, I think that's attributed to the fact that my life went so out of control in June. Everything I believe in and believed to be true, turned out to be a falsehood. Over two decades of my life, torn away. I have no doubt that when I find a new home, I will settle back in both physically and mentally. At the moment, I'm just plain exhausted in both regards.

But I agree, the talk of Riluzole makes me agree that this is a done deal, just not signed sealed and delivered yet - which is how I would prefer it. My gastrocnemius have started to atrophy quickly. And just in the past few months my thenar eminence is nearly gone on my right hand. The "hole" between my thumb and index finger seems to get deeper every day. The neuro pointed out it is beginning to atrophy on my left hand too. FDI on the right is now graded at 2. I have claw hand but, thankfully, I still have a good grip. There is always a blessing. Sometimes I forgot to look for it.

Paulette, I do believe in fate too. I think everything happens for a reason even if we can't see it at the time. You have been to hell and back, and now inspire us with your attitude and determination. I fully understand what you mean when you said: "He gives me every bit as much as I give him even though he is totally debilitated now." That kind of love is magical. It's meaningful. And I would rather have that for a short time than a lengthy loveless relationship. The spirit that he embodies through you will never die in all the years to come. It's pure magic.

Vincent, I know what you are saying. I think we see the same doctor. He drew me a picture of what was happening. Explained the PLS, ALS and PMA and circled where he felt I was more dominant at this time. But likewise, he said he felt this would land in the middle at ALS. Similar to you, fatigue at this stage is my biggest hurdle. It seems to take me three times longer to do tasks that were once easy. I burn out so darn quickly. Stiffness is also wearing me out, especially in the mornings. I try not to plan anything too early anymore. I need a couple of hours just to get going and pull some energy together.

Janelle, I had it marked in my calendar that your appointment was next week. I'm behind you all the way. If they still won't or can't say for certain, read this thread -- it's filled with love and will remind you, as it has me, that you and I do belong and we have everyone's full support. It means the world. And I love you too, my friend. You've a heart of gold.

I'm taking your advice Tille and concentrating on my life from now on. I am mentally excising the ex. The shock is finally wearing off.

Off topic, I have always driven big vehicles and normally choose staid colours like grey or black. I bought myself a used Fiat 500 in RED! She's cute as a button and I'm calling her Jellybean. Undoubtedly, there will come a day where I can no longer drive. So while I can, I'm driving something fun, cheery -- and cheap! Jellybean brings a smile to my face. I'm in love! :razz:

The best analogy I have heard in awhile was yours, Laurie: "you've got white space with decisions (where to live being a big one) to fill about the rest of your life. By your handle, you aren't going to hide yourself in that white space, so grab a paint brush, is my suggestion."

I am taking your advice and moving forward with a paint brush in hand. I haven't quite chosen the colour yet but I am planning to paint that white space with something bold. Green Queen, I have no doubt what your chosen colour would be.

Off to see flat number one. Fingers crossed.

Thank you all so very, very much. Feeling the love and sending it right back to all of you.

Cee xx

 

[notBrad]

Hi Cee,

Sorry to hear about the problems but glad you are hanging around and more importantly glad to hear there's a strength coming through in your posts that is both heart warming and inspiring.

You keep on plowing ahead and living life!

Take care,
Brad

 

[zoohouse]

Hi Cee, I can hear the fight in your voice, and I LIKE IT! I too like absolutes and actually got into it with my older son last week. He said "Mom you are all about absolutes, and I HATE absolutes. If you won't stop talking about God when I visit you I will completely stop coming. So it is your decision and it is a Yes or No answer."
I had to chuckle through my disbelief and anger, shook my head and answered back. " Well for someone who hate absolutes you just gave me three." I reminded him that as you walk into our door you will read. : As for me and my house we will serve the Lord: and that is not about to change. This was the first time that I found out that he was an atheist, as he had often had conversations with us about the faith in God. But I said, I do believe he does have a religion and that is the religion of Self, what ever makes him happy he will do and continue to do. I said that his faith maybe even stronger than mine, as I have never threatened to cut him out of my life if he did convert to it, yet he is ready to "cut me out of his life" if I don't denounce mine.
The sad thing is that I can see when he turned his back on his faith and it was when Tim was diagnosed with ALS. He started drinking a lot more, spending most of his time and resources on entertaining himself, and using profanity while on Facebook. He said that he has decided he is just trying to have fun in this life, and not put everything on the afterlife, that most likely isn't even real. We didn't preach to him or his new girlfriend when they came over, but did give God the glory for all the beauty and love that he see and continually experience from our Christian family.
I am sorry that I went off on a tangent it is just that I have had a difficult time this last week with Tim being really sick and then being blasted by my oldest son. I never thought I would see the day as we had been so very close. Anger and bitterness can be such a destructive emotion. I am glad that you have chosen not to embrace it, and continue to be enthusiastic and embrace what life you do have. None of us get out of this alive, it is just that some of us get there sooner than others.
Paulette

 

[Atsugi]

Paulette wrote: "None of us get out of this alive, it is just that some of us get there sooner than others."

Very true.

I wish I could help you understand your son, the atheist. Maybe that might help you all find a little more peace. (I am an atheist, too.) But perhaps we should meet in the Christians thread to discuss it if you like.

--Mike

 

[LifeEnthusiast]

First off, Brad, thank you. Your words and acknowledgment mean so much. Truly. I am trying to get my groove back on. I am getting my groove back on. It's a different groove, but it's a groove nonetheless. And I can say for certain, I wouldn't being pushing forward and finding strength if I hadn't been apart of this forum. Truly.

Zoohouse, I get what you are saying. Rant all you want. Don't apologize. But please don't push your son out of your life nor let him push you out of his life. There is a fine line between being agnostic and atheist. Too often the words are interchangeable and they shouldn't be. I used to label myself atheist. I've decided now that if asked to choose a word, I'd say I'm agnostic. I'm not even sure that fits. In my lifetime, I've seen it all. I've been privileged and cursed at the same time. I do believe that there is something greater than all of "this". I just don't think that anything greater than us, to some a God, would want us fighting over semantics. Perhaps, Mike is right in that this should move to another thread.

Grief and loss affects all of us differently. Personally, I find myself having a range of contradictory emotions on a daily basis. I'm not there with you. I don't pretend to know your feelings, beliefs or emotions -- nor can I say the same about your son.

When my Dad died of a rare cancer 25 years ago, I felt angry and arrogant. All belief in anything was pushed aside. I was incorrigible. I was rude and bitter. And then I moved away. I covered wars. I saw life. Life saw me and smacked me down. I saw hope in despair. Despair in hope. I grew up. Life is a learning process. It's shades of grey. There are no absolutes. (Ironic when you read my previous posts on this thread). I don't know the back story. I'm not minimizing what you are feeling nor condoning your son's behaviour.

But I would, in all honesty, say that no belief or disbelief is worth losing a relationship with your son. Don't apologize for expressing how you feel. PM me anytime, if you'd like. I'm all ears. And I am truly sorry that you are in this situation. I can only imagine how it compounds everything you and Tim are going through. And, admittedly, I don't know the ins and outs -- heck, I don't know much about anything -- but I'm sure that you and your son, given a chance, can find common ground again. And from what I've read, or interpreted, that is a love and closeness to one another. You both need to focus on that mutual goal, in my humble opinion.

No matter what happens, rant here all you want -- anytime. We have your back. Cee xx

 

[LifeEnthusiast]

Nuts, I am so sorry I overlooked your post. I love the term "angel wings". Thank you. xx