rose
Extremely helpful member
- Joined
- Mar 29, 2008
- Messages
- 2,925
- Reason
- DX MND
- Diagnosis
- 7/2008
- Country
- US
- State
- Maryland
- City
- Anytown
Knowing something is wrong, but yet not knowing what it is is frustrating and scary. The frustrating part comes in when the doctors do multiple tests which don't turn up anything. The scary part depends a lot on the individual, and, in this day and age, how much they've searched via the internet about their symptoms. "Wrong Diagnosis" is as much to blame as any other site for lumping any given mixture of symptoms together and giving worst-case possibilities.
When I first noticed something was wrong, I gave my doctors every single thing I noticed at the moment, along with any history (which in my thinking) was related to my current events. I am an intelligent, educated person. But, my educational background is not medical. Even though I kind of laugh at myself now, it really is true that "in The Middle of the Beginning" I tried to convince my rheumatologist that what I had was fibromyalgia, because I had thick skin on my pointer finger, a painful to the touch spot on my lower spine, and didn't have many wrinkles for someone my age. In my mind, this explained my voice changes due to thickening of the vocal cords. In reference to my vocal cords, this in fact was the opposite of what was happening, as mine were thinning due to atrophy from a lack of communication with my nerve to the muscles. I could go on, but I doubt I need to.
When I first came to this forum, I never intended to post, I didn't think I had ANY form of motor neuron disease. I'd had a dirty EMG, but I didn't understand its significance. I hadn't even heard the term "dirty". Only that my doctor had talked about cranial nerves, and active as well as chronic denervation and reinnervation. When I did first post, I kept waiting for Al (who was much more active then) to respond, saying it didn't sound anything like ALS to him. It was only a few weeks after I posted that I received a diagnosed of PBP, but I continued to read and respond on the Do I Have ALS forum, because the mental torture of not knowing what was wrong was very fresh in my mind.
Recently, my diagnosed once again was re-examined. All of the old uncertainty came flooding back. I can assure each and every one, who may have forgotten how bad facing the Great Unknown is, that it is not a good place to find oneself in. Obviously, I would have loved to had the diagnosed rescinded, and a treatable illness discovered after all. No other cause turned up, so I'm left with having some form of MND.
People have different personalities, and we can only take on so much in the way of worries and burdens.
I hope that we, as individuals, are able to evaluate what it is we look for within this forum, and have the wisdom to leave what upsets us for someone else to deal with.
I honestly have problems reading much on the CALS forum. I feel so badly for those who have the responsibility of caring for a loved one with ALS. I don't know how they do it. So, its not that I don't care what they're going through, its that I can't let myself sit here in front of my computer screen and cry every day as I read.
This forum is set up very well. If you find an area of it is upsetting to you, then don't visit it. If a person disturbs you, go into your User Control Panel, and on the left hand side, there is the option to Edit Ignore List. Add the person who rubs you the wrong way to that list, and, henceforth when you read posts on the forum, anything said by that person will not show up on your computer, they "magically" disappear.
I love my forum family. I look forward to knowing how they are, and learning about the joys in their lives. It is crushing to lose a member, or a member's loved one, to this horrible disease. When I go onto my profile page, where it shows a selection of my "friends," its always so sad to see the avatar of friend who has left us displayed. Once recently Beth, Pat and Jennifer all popped up at the same time. It certainly reinforced my understanding that I only have Now. I don't have the promise of tomorrow, and its up to me to spend my time and emotional effort wisely.
So, I'm here for the same reasons I would go to an actual, local support group. What I take away from this collective group of people on the forum is so much more than I could ever hope to give.
__________________
When I first noticed something was wrong, I gave my doctors every single thing I noticed at the moment, along with any history (which in my thinking) was related to my current events. I am an intelligent, educated person. But, my educational background is not medical. Even though I kind of laugh at myself now, it really is true that "in The Middle of the Beginning" I tried to convince my rheumatologist that what I had was fibromyalgia, because I had thick skin on my pointer finger, a painful to the touch spot on my lower spine, and didn't have many wrinkles for someone my age. In my mind, this explained my voice changes due to thickening of the vocal cords. In reference to my vocal cords, this in fact was the opposite of what was happening, as mine were thinning due to atrophy from a lack of communication with my nerve to the muscles. I could go on, but I doubt I need to.
When I first came to this forum, I never intended to post, I didn't think I had ANY form of motor neuron disease. I'd had a dirty EMG, but I didn't understand its significance. I hadn't even heard the term "dirty". Only that my doctor had talked about cranial nerves, and active as well as chronic denervation and reinnervation. When I did first post, I kept waiting for Al (who was much more active then) to respond, saying it didn't sound anything like ALS to him. It was only a few weeks after I posted that I received a diagnosed of PBP, but I continued to read and respond on the Do I Have ALS forum, because the mental torture of not knowing what was wrong was very fresh in my mind.
Recently, my diagnosed once again was re-examined. All of the old uncertainty came flooding back. I can assure each and every one, who may have forgotten how bad facing the Great Unknown is, that it is not a good place to find oneself in. Obviously, I would have loved to had the diagnosed rescinded, and a treatable illness discovered after all. No other cause turned up, so I'm left with having some form of MND.
People have different personalities, and we can only take on so much in the way of worries and burdens.
I hope that we, as individuals, are able to evaluate what it is we look for within this forum, and have the wisdom to leave what upsets us for someone else to deal with.
I honestly have problems reading much on the CALS forum. I feel so badly for those who have the responsibility of caring for a loved one with ALS. I don't know how they do it. So, its not that I don't care what they're going through, its that I can't let myself sit here in front of my computer screen and cry every day as I read.
This forum is set up very well. If you find an area of it is upsetting to you, then don't visit it. If a person disturbs you, go into your User Control Panel, and on the left hand side, there is the option to Edit Ignore List. Add the person who rubs you the wrong way to that list, and, henceforth when you read posts on the forum, anything said by that person will not show up on your computer, they "magically" disappear.
I love my forum family. I look forward to knowing how they are, and learning about the joys in their lives. It is crushing to lose a member, or a member's loved one, to this horrible disease. When I go onto my profile page, where it shows a selection of my "friends," its always so sad to see the avatar of friend who has left us displayed. Once recently Beth, Pat and Jennifer all popped up at the same time. It certainly reinforced my understanding that I only have Now. I don't have the promise of tomorrow, and its up to me to spend my time and emotional effort wisely.
So, I'm here for the same reasons I would go to an actual, local support group. What I take away from this collective group of people on the forum is so much more than I could ever hope to give.
__________________
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