My intro

BrianD · 09-25-2009, 01:50 PM

Hi all...

So here is my intro for myself...

I was diagnosed with MND/ALS on 8/28 by my in-town neurologist, based on the evidence of both upper and lower motor neuron disease (including EMG). I have many of the typical symptoms... with one key exception... I do not show signs of significant weakness.
(Yes, I know this a major point... but bear with me a moment)

Was told in the office his diagnosis was ALS, and given perscription for Rilutek (which I am not taking yet based on my side effect research and current symptoms)

This led to second opinion about a week later with a more specialized neuro at the Univ of Colo. This confirmed all of my above symptoms of course. However, this neuro is hesitant to give a "definitive" dx of ALS without seeing clinical signs of weakness... which is probably the right course of action. Next follow-up with another EMG is there in Nov. But this neuro does indicates this is a likely diagnosis.

In addition to clinical symptoms, I do have some observed coordination changes, such as missing a step in the stairs periodically, or grazing my shoulder on the door frame as if I "miscalculated" where I needed to step or lost my balance a little.

I do have what I would say is slight weakness in my hands, based on noticable (again slight) changes on my typical activities (such as using pliers, dropping heavy objects)... but not a "clinical weakness".

So... do I really have ALS? Yes, Maybe, I don't know. Of course the answer is we'll wait and see how things progress from here. But reading your own medical records that contain "It is certainly difficult to make this grave diagnosis..." sure hits you pretty hard.
With a wife, and boys ages 9 and 12... my mind just can't help but get constantly distracted with lots of "what ifs". This is not worrisome/anxious type of thinking, but just lots of stuff.

I'm thankful that whatever it is, it does not appear today to be a quickly progressing form. And I'm already thankful for this forum that has a ton of great info... and more importantly a ton of great folks (which you now have another guy praying specifically for you). Actually... I'm thankful for lots of stuff, but that can be a topic in itself.

So... long intro to say "Hi", but now you know more about me.

Brian

BarryG · 09-25-2009, 02:15 PM

Welcome Brian, sorry you need to be here! I hope that things work out well for you and that you get good news in November.

Blackpool · 09-25-2009, 03:56 PM

Hi Brian,I am sorry that you had come to this site but until it is confirmed there is hope.Peace be with you.

serenade · 09-25-2009, 03:58 PM

Welcome Brian! You have come to the right place for any information that you want about ALS. I hope that you have a positive outcome in November. I will keep you and your family in my prayers.

Zaphoon · 09-25-2009, 04:38 PM

Hey there, Brian!

You are surely an odd case! If you do have ALS, it looks as if the neuros have found it in the very early stages. Again, if it does turn out to be ALS, let's hop it continues on a very, very slow path.

Welcome!

Zaphoon

GlenBrittle · 09-25-2009, 06:54 PM

Hey Brian,

Welcome to the site. I hope that the November follow up goes well.

You can conquer the what-ifs. Get your affairs in order , wills , living wills , finances in order as much as possible right in the beginning. It takes a ton of worry off of your mind. A little work now will save a lot of stress later.

I had the stumbles and missed steps before the weakness came. A year later , I found this place. These people have helped my wife and I keep some of our sanity.

Glen

shelleynshaggy · 09-25-2009, 07:41 PM

Brian - we are kind of in the same boat. Jim's neuro didn't want to pigeon hole him with an ALS diagnosis. Instead he put ALS syndrome in one place on his records and MND w/ FTD on a 2nd area - making an SSI nightmare. Like you, Jim doesn't have any definate weakness - we have noticed small changes since Dec. 08. Since we have 1st seen the neuro in July he has been experiencing more and more symptoms. Some because they are more frequent and others because we are on alert for them. Keep a log of what symptoms you have and when. We go to see the neuro at the ALS clinic in 2 weeks - hope to get this mess cleaned up then.

BethU · 09-25-2009, 10:05 PM

Brian ... let's hope it doesn't turn out to be ALS. However, as you know, most neuros don't make the dx lightly ... or even bring the subject up without some strong feeling the evidence warrants it. But I have developed denial into a fine art, and I recomment holding on to hope that a) it's not ALS and/or b) if it is, it's slow enough that they will have found a cure by the time you start pricing Dynavoxes.

I only want to comment that you are the only other person who has mentioned the doorway "symptom"! I think we should have a "dumbest symptom" contest sometime. I went through a period where I couldn't seem to make it through the center of any doorway ... I was always bouncing off the door frame. I chalked it up to my general klutziness, but it went away after a few months.

So sad you're possibly facing this. Let's hope (there's that word again) it's not. But there is much to hope for these days; good things are on the horizon in research.

maryam_rastkar · 09-26-2009, 08:48 AM

hi brian
sorry you need to be here
i hope you get good news , -there is lots of hopes-
i will keep you in my prayers

welcome
Maryam

halfin · 09-26-2009, 01:25 PM

Welcome to the forum, Brian. I know it can be very hard when you are in that place where you seemingly have a diagnosis of such a serious disease but you don't really feel sick. I was diagnosed 2 months ago mostly on the basis of EMG changes, with only a little bit of voice slurring that nobody else can really hear, and one finger a little weak. I have been pretty doubtful about the diagnosis although I have had a little bit of progression since then. My right hand is definitely weaker now than it should be but I still have trouble accepting the diagnosis.

In my case, I did start on the Rilutek when I got the diagnosis. I have not had any noticeable side effects, and got a blood test after 1 month which showed no liver problems. I read that there is some evidence that starting Rilutek early may give somewhat more benefit than the standard reported 2-3 months, so I am hopeful that this may be a tangible advantage of an early diagnosis. The main practical problem is that you have to take it every 12 hours, within a 3 hour "window" of no food. But I have a schedule which works OK now.

Your EMG in November should be very informative. In my case they saw worsening in the EMG between June and August which led them to make the diagnosis. I'm sure they will be looking for signs of progression and change in your EMG. The thing about the weakness is that as nerves die due to ALS, other nerves can take over the function of the dead ones, for quite a while. So you don't actually experience weakness until the disease is relatively far along. I've seen figures of 50% to as many as 80% of the nerves having to die before weakness appears. Possibly the subtle signs you are seeing of dropping things and bumping doorways might happen sooner, I'm not sure.

How long have you been noticing those small problems? Is that what led you to the neurologist?

BrianD · 09-26-2009, 11:39 PM

What led me to neuro is the muscle twitching in upper arms... which started back in April.

GP first said it was just due to stress back in May. When those were worse in July, then the off to the neuro, which happenned in Aug.

I'd say the coordination stuff started happening in the June timeframe. It didn't seem like a big deal back then, so I wasn't keeping detailed logs at that point.

Glen... thanks for the tip on the will, etc. The Boy Scout in me had those in place a number of years ago.

BrianD · 12-03-2009, 03:48 PM

Update...

The ALS specialist neuro has now "officially" diagnosed me with ALS from the follow-up appointment I had this week. She was able to see some hand weakness at this point, and based on new EMG results.

So now I'm gonna go over and get my newly-deserved pin on Barry's map!

So thanks in advance for all the help in answering my questions along this journey we are all in together.

Brian

Al · 12-03-2009, 05:22 PM

Sorry to hear the crappy news Brian. Take it one day at a time.

AL.

BarryG · 12-03-2009, 06:14 PM

Bian, sorry about the bad news. You now have a pin on the map.

halfin · 12-03-2009, 06:39 PM

Brian, I'm sorry to hear about your diagnosis, but now you are officially one of us PALS and part of the community of people going through this challenging experience. I hope you are able to find strength and encouragement from the experiences of others here, both newcomers like me and old timers like Al. I too started with slight hand weakness, along with some speech problems, and after 4 months it is now affecting my legs. The one piece of advice I would give you at this point is to go easy on yourself during this stressful period. Take your time getting adjusted to the diagnosis, don't try to continue to do everything 100% at the level you were before. Rest your body as much as possible. I know how difficult it is to hear this news, it may take a while to sink in, but all of us have been through it and we will be there to answer questions or just listen if you need to vent or talk about what you are going through.