Need Some Help Understanding What This Means.

[hope]

I hope you do not mind me asking for a bit of help tonight. I have recently been diagnosed with als, september. Well in the last few months my wife and I have had a hard time accepting this diagnosis. Yes we are very upset and we are trying hard to cope with this. There has been many upsets with lack of support and so on and so on but one thing that we do not understand is the second opinion and what was said by the doctor. He says there is clinical evidence of motor neouron disease in upper limbs. No bulbar sparing at this time. I have twitching in both arms and chest area. Loss of motor skills in fingers of left hand. Fatige which I think is due to being depressed partly. He says , strickly speaking, the dissemination in space does not fuflfill criteria for als. Certainly this seems to be the leading diagnostic consideration and it is difficult to conceive of an alternate diagnostic possiblility. In such cases, observation over time remains important .

If you all do not mind would someone be able to help me understand what this doctor is saying. I understood it as he is not sure it is als I could be wrong.

hope.

 

[Al]

Hi Hope. Usually with ALS there is upper and lower motor neuron involvement. If you only have one type the doctors will usually say that you likely have it but we will have to wait and see when more symptoms show up. The loss of lower motor neurons leads to muscle weakness,twitching of muscles(fasciculations) and loss of muscle bulk(atrophy) The loss of upper motor neurons causes stiffness ,cramping and weakness. They may be thinking that you have one of the other motor neuron diseases and may suggest alternative therapies. I hope that this helps a bit. It does take a while to digest all the information and it is not an easy diagnosis to accept. You will find help here. We're not doctors but we are a reasonably well read source of information and are living with it too.
Al.

 

[hope]

Al, thank you kindly for replying. My wife and I as I mentioned like everyone are still in shock. I am forty eight years old and I am terrified. My wife has been wonderful with me and has helped me keep fighting everyday to keep hope. This was our second opininon but we are having a third opinion on the twenty first of february with dr.michael strong. He is an expert in this. I think you are all wonderful on this site. I also would like to ask is it okay for my wife to ask questions here and take part of the group? Sometimes she is alone when I am resting and she will read the posts, just wondered if it would be okay if she posted also or does she have to sign in. Thank you again for your support and kindness.

hope.

 

[Carol Deboer]

Hi Guys,

Sorry to hear that you are facing als. It is good however that you found us here. We are a pretty good bunch here, and as Al said we are all living with als or have gone through it. Keep your spirits up. I know this is easier said than done, but it sounds like you have a good support team in your family. Mike Strong was our doctor in London and we went to him for 7 years. He is awesome. You will get your much needed answers with him. He is one of the best doctors in Canada that specializes in als. Their whole team there is terrific. And, your wife is welcome here anytime. Just to read the posts or to join in. Good luck. Hope to hear from you often.

Stay Strong, Carol

 

[TBear]

Hi:
We also saw Michael in London and took part in one of his trials. He and Anne are great people and very helpful. ( I learned alot about patient transfers from Anne). Your wife is also very much welcome here... I just hope that both of you have a sense of humour to deal with the site. (once again that's humor for those who speak American).

CHeers

T.

 

[hope]

Thank you so much for making my wife and I feel welcome. We have known about this since september and have felt so alone. There is no support were we are and that in itself is upsetting. The support that was available was the kind that we could not deal with at this time. We wanted to have a feeling of hope not hopelessness.

My wife and I have been married thirty years and she is my best friend. She is looking after me and she never complains. She is wonderful and kind and she tries so hard to keep me fighting. There are days I do not feel like even getting out of bed but she will say come on honey lets do something today. We will not think of als we will think of things we enjoy to do. We like many have cried a million tears. My wife has no family, her family disowned her years ago because she was ill with an illness that they were ashamed of. She has fought hard to be well again and this happend. I was there for her through the tough times and the good and she says even though she is still ill herself she will take care of me. That is what love and marriage is all about. Sickness and in health. She makes me laugh when I do not feel like laughing. She will do anything to put a smile where a frown is. I am truly blessed. Thank you everyone again for a place like this. We do not feel so alone now.

hope.

 

[Granny]

Welcome to you, Hope, and to your wife.
What a heartwarming story of your love and marriage. Your strength and love will get you through this!
This is a great place to come when you are lonely, discouraged or just in need of a little hug.
Hang in there and do have hope!
Love and prayers, Leah

 

[Al]

Hi Hope. I don't think any one asked where you are from. We don't need your address or any thing like that but it helps to know what state or province beacause they are different in levels of care etc. I am up to my fifth opinion now on what I have. The jury is still out. I'm still looking for answers. The important thing is not to give up. There isn't much that is taboo here as you can tell from the Bathroom thread. If you or your wife have any questions just ask away. You'll get a straight answer and possibly it will be laced with humour (humor). We try to be a fun bunch.
Welcome.
Al.

 

[hope]

Thank you all again for the kind words. Well we went back to the neourolgist this morning, actually my wife did because I won't go in he depresses me to much. She said to him okay now you say my husband has als and the doctor in ottawa says i do not fit the criteria in his sentence inhis letter but tells me I do. Progression is really slow he says. One in ottawa says time is important to wait and see. This one here says in a letter yes als but will not tell my wife one hundred percent yes. So we are going to see the doctor in london to see what he says. Doctor told me at the beginning of september I should go on disability and leave job, so I did, wrote teriminal illness on papers. Now we read this letter from second opinion I am really mixed up here. My wife said to him there is hope then, he says well i am ninety nine point certain. Well my wife said then there is still even a little bit of hope you could be wrong. He said not likely that he is wrong. I do not understand this. Puts it in writing but will not say absolutely.

Upper limbs are effected and fingers of left hand. Fatigue is really bad, but I feel it is depression. We have three weeks to wait to see the doctor in london. My wife is always worried she is bothering the doctor with questions. I tell her not to worry. She apologized to the doctor but I said to her you do not need to. She told him I love my husband and I want to find hope for him. Feeling very mixed up today, not sure what to feel.

hope.

 

[TBear]

The reason that you can't get a definitive answer is that ALS is usually diagnosed by ruling out all of the other possibilities. Even then, it is usually confirmed by a second neurologist. If you are seeing Dr. Strong in London, you will get straight answers. Hang in there. Anything is possible and you should always hope for the best but also prepare yourself for the worst.

T.

 

[gapwedge]

Hi Hope. Hang in there, you're in good company. When I was diagnosed 6 1/2 months back, it was a similar story. The first neuro found abnormalities in an EMG that was done [citing mostly upper, but also some lower mn activity too], but stopped short of saying ALS, and instead sent me to a real ALS specialist. This specialist basically told me yes, it's most likely ALS, and had a few other tests done, a neck MRI, just in case a chip of a bone or vertibrae might be interfering with function, a few other blood tests were requested, like for kennedy's disease [which is hereditary, and I knew of no family history, but my grandfather on my mother's side died of cancer early in life, and had no boys, so we checked for kennedy's just in case]... no go, vitamin b12 deficiency, no go, etc...

Finally, the third neuro confirmed that yes, he too concludes it is ALS. Later, he explained that there's an international standard for what exactly constitutes ALS... and if your condition has not yet progressed to the precise extent required by the definition [a certain minimum combination syptoms and body areas affected] - which mine hadn't - even if your condition is heading in that direction - technically, until you cross the threshold of the standard, they only say that ALS is what is most suspected. Seeing your neuro's has said to you in effect, you look to have als, but "we have to keep monitoring you over time" tells me that this is where you are.

Lastly, you brought up the point of one Dr. telling you to go on disability due to ALS, and afterwards, another Dr. stopped short of a definitive ALS diagnosis. Both things are normal. Dr's have a lot of lattitude in what they can state in support of a disability claim. So while you may not yet meet all the requirements for official int'l definition of als, as long as the neuro sees all the signs [especially upper and lower mn abnormality - however slight - in an EMG test] they typically won't hesitate to support the patient in any way they can in order to help them gain disability, and other insurance coverage [in the US] by vouching for the fact you have ALS sooner rather than later.

Remember, you guys are not alone. Keep living life just like your doing it man. Rock on.

Tom

 

[hope]

Tom, thank you so much for you reply to my post, it was very helpful in underdstanding what is going on. As you know the devastation is hard. The other thing that upsets me here is I had neck surgery years ago and they took a bone from my hip and put it in my neck due to a problem I had from an injury. That mri showed impingments and scar tissue, we are waiting to see the neck specialist to see what he thinks.Is it possible the problems are coming from the neck? I want to believe it is because the other right now is to hard to accept. We are on a roller coaster. My wife cried last night half the night, she is exhausted and so sad such as I. She apologized for crying she said I am trying to be strong but you are my world and I am frightened. We will hold onto hope that this may not be the als but the doctor here says it is but won't say one hundred percent verbablly. Thank again for your post it helped.

hope.

 

[gapwedge]

Hi Hope - Yes, I recall it was an MRI of my upper spine and neck he asked for, just in case. It all came up negative, for me. I recall him saying there's a "remote chance that some of your symptoms and what we're seeing on the emg could be caused by something touching or obstructing the spinal cord area up there." So, the fact that you've had some "construction work" done up there is defintely a good reason to be sure a top specialist pursues this possibility. Good luck, and hang in there - yes, it's a hell of a rollercoaster.

Tom