Your Diagnosis Short Story

[NeverPan]

First of all , I would like to say thanks to those who share and inspire others...May you be truly blessed!

I speak only for myself here, and instead of asking a multitude of questions, I would love to hear some of your stories of diagnosis. I feel at times that doctors are impervious to the plight of anyone dealing with something out of the norm. I have now had two Docs. utter the terms MND/ALS (GP and Neuro), and although I truly believe that it's not anything realitive to this, i'm not the expert and I must adhere to their requests for further testing. This is a rolorcoaster ride and I want off. I have read a hundred times that if the EMG is clean then so am I. I truly believe that and will live it. You here are "In the know" and I greatly value you advice and support.

I know deep down that there is something seriously wrong, and feel they are not on the right track.(no pun intended). I will ride to the end and what will be...will be, but until I hear from them something official, I continue to live an work and love.

Now, I ask, can you remember? Can you share? What happened in the beginning? How did it start? and before you knew for sure...what did you think?

Here is my short story.

I'm 47, I'm happy, I have a great family, wonderful children and grand children. I wake up one morning in Feb, and my left arm is weak. I mean really weak, I notice a can't lift a set of stacked glass bowls from the cabinet shelf over my microwave. Then there is this thing with my fingers, I can't pick up the small stuff, paperclips etc.... Today, I have muscle facs, trouble breathing lying on my back, been diagnosed with Dysphagia because i'm having trouble swallowing and getting choked.

Timeline Feb12 - Aug-12. EMG's are clean...clean...clean again so no ALS...that's great! I'm happy,but there is still something tugging at me, something lurking, waiting. Now I wait and wait some more. Neuromusc at OSU (Ohio State University) 10/11/12 at 3:00pm. I feel like I don't want to know and don't want to go, but I have to because my kids won't let me "not go!"

I would love to hear your story...big or small your story matters to me.
Inspire hope!

 

[edwards5257]

I am reluctant to post but am doing so. I started around the first of the year also. Dizziness, weakness (still am all over), swallowing problems and weakness in neck, throat areas. Twitching constantly all over, esp. legs. I too have clean EMG's. Many other tests too numerous to mention. Breathing difficulties also, maybe not. And it is VERy hard to play the organ any longer. Have seen a Top notch neuromuscular specialist. I await a call back on my test results three weeks ago. Go back 10/25/12 if I can wait that long. See my GP next Wednesday. We'll talk more then. I am being brief because I too know that it isn't ALS, but I am not too sure on the small fiber neuropathy. Something is wrong. My balance is off also in many ways. Go with what you have been told by your family, go and see the neuromusc guys. For your family and grandchildren. I have one grandson whom I adore!

 

[notme]

Generally speaking, asking those with ALS to "tell you their stories" will be met with some negativity for several reasons in this part of the forum...the main one being that their stories may well send those that are anxious into a state of even more anxiety.

For instance, if I were to say my issues started with just one finger on one hand and progressed to loss of 90% of the use of that hand, someone reading it will panic and say "Oh my gosh, she had a finger issue, too! It must be ALS I have" .... do you see what I mean?

In your case--something is wrong, it seems. But perhaps since you have two clear EMGs you can simply try to put ALS out of your mind and continue to try and find answers via your doctors.

I really don't feel the stories here will do more than make you more anxious.

 

[Ms. Pie]

What Notme said.

 

[brooksea]

What notme and Ms. Pie said!

 

[NeverPan]

notme.. I agree, and to clarify, i'm not anxious with regards to ALS. i'm sure that it's possible for some to be anxious about their own mystery illness, but that's not me. I have always been a caring person and wish nothing but the best for others. In my journey of discovery, I must admit that I knew nothing about MND/ALS and have always been healthy (until I turned 40). I have no desire to offend nor provide a forum for those that have notions otherwise. As a knowledge seeking person by nature, I would love to hear what others have experienced in their journey. Simply put...that is my only intention. It's unfortunate that this needs to be clarified as I can see your point. I have no questions about ALS or did I express a desire only to hear from only PALS. I am more interested in hearing from those that wish to share their thoughts and possible stories as it appears that most of those here might have been through something similar.

From someone who does not have ALS, nor do I ever wish, hope or desire to have or to expose my family to such a dreadful disease, I struggle with the dilema of being a test subject to all the doctors who see that something is wrong, but can't put their finger on it. This is a story. I will always be inquisitive by nature, skeptical...sure, but I guess I never assume the worst nor beleive that other assume the worst from me. Thank you for your response. I will consider this when posting in the future.

 

[notme]

NeverPain,

Then I'd suggest you spend some time browsing the other portions of the website. There are dozens and dozens of stories of the journey of folks within them--both current members and those we've lost in the last few years-which is just entirely too many, sadly.

The section you posted in is for those with questions about their own health issues. We limit the information we give in this area, and desperately try not to post things that will send the anxiety ridden into anxiety attacks.

Read a few pages of the posts here in this area and you can easily see what I'm talking about.

In the last year alone, our family here has lost way too many. JoelC--one of the original posters here passed last year. Al--the forum moderator for years and years, passed May 31st. Allen, the one who answered almost everyone who posted in this section passed a few months ago, too. Richard, our other moderator passed shortly before Al. Brooksea lost her husband, too.

Discussing 'stories' can be a painful experience for members here. It brings back painful memories of those lost, family members, loved ones--and for those like Ms. Pie that are living with ALS right now.

Our stories in this area just aren't really helpful or appropriate. It's not the proper place--and that's just my opinion.

I cam here over a year ago when I couldn't use one FINGER, my hand had atrophied, and a neurosurgeon said he thought I had ALS. Now, a year later, I've lost 90% of that hand and the right hand is following. My legs are in an almost constant state of spasm --- and we still have no idea what is wrong with me. Mostly my fault. While I was an anxious poster a year ago, now, I simply don't want to know. I treat symptoms to the best of my ability. In a little over a year I've lost most of my dominant arm. I can't drive anymore because my reaction time is diminished and my legs cramp without warning, making me a hazard. I use a machine to help me breathe at night as my lungs are shot. I use O2 during the day so I can function. Every doctor I see knows something is wrong--unfortunately, none of them know what that something is.

My point in that little paragraph of whining is that many here are in a similar boat--and we are the LUCKY ones. I don't have a diagnosis hanging over my head. Those here that I love, do. But my little paragraph above can send the anxious off to a panic. I've seen it happen over and over again here.

Read some posts...and once you have enough posts to get Message privies, you'll find that many will be happy to interact with you and discuss their stories. For as many here that don't really want to talk about it--there are also those that have family members that don't want to hear about it--and they may welcome the chance to talk to someone who has an open ear to listen.

I apologize if I sound cold or distant. it wasn't my intent.

 

[notme]

off to moderation land

 

[panguinjen]

NeverPan,

I don't know you well enough to tell you our story. You will find that most of us share generalities until we form relationships that allow respect and trust to grow. This is very painful for us to go through and I am not willing to expose the depth of my pain to someone who is curious and has no track record here. This is not meant to offend, but to explain my unwillingness to meet your need for stories.

Jen

 

[vzandt]

I'm with notme...Ms pie and Jen.

 

[WellsRuby]

I agree with all

 

[kiwisally]

neverpan...... I agree with all the people who have been very polite and politically correct in answering your inquiry. I'm not anxious with regards to ALS, I have ALS. I'm sure that it's possible for some to be curious about their own mystery illness, but that's not me! I have always been a caring person and wish nothing but the best for people who come here when they do have ALS. In my journey of discovery, I must admit that I knew nothing about MND/ALS and have always been healthy (until I turned 50). I have no desire to offend you nor provide a forum for those that don't have ALS but here I am doing so. As a knowledge seeking person by nature, I would love to hear what you have experienced in the most difficult journey of your life,whatever that may be. I don't know you it's really just morbid curiosity as I have nothing to do for the next 10 minutes. Simply put...that is my only intention, to fill up a few minutes of my time by asking you to take up a lot of yours. It's unfortunate but really quite easy to do so as by and large I just copy and pasted your post, which needed to be clarified as I can't see your point is any different than mine is, seeing how few changes I have had to make. I have no questions about your most difficult journey of your life but do express a desire only to hear from you. After hearing from you, spill your guts to us, total stranger who you don't know, others may wish to waste their time and share their thoughts and possible stories as it appears that most of those here might have been through something hopefully you never experience.
Thank you for your response. I will consider it when posting in the future.

 

[Luke]

You can always Go to any member's profile, click the Statistics tab and then click "view all threads started by this user" to read their past posts. Since, presumably, people would only post things that they're comfortable with a broad audience reading, you can get a feel for their experiences without crossing that line of privacy. That's probably the more tactful approach.

 

[Toto's Dorothy]

Ooh, ooh, what Luke said!

 

[Luke]

Are you being sarcastic?