Mr. Wright, consider walking a mile in Lorie's shoes
Mr. Wright,
You may wonder why do some people have a problem with a few of your comments?
Some of the things you say are what I call text book classic signs of ALS. Not all of us present with the classic symptoms.
I know my Doctors were first alerted to begin testing to see what was wrong with me just by a high CK level. Not the textbook way of thinking someone may have ALS. Then again every case is unique and presents itself with its own set of symptoms and rate of progression.
Let me use Lorie as an example. She has been the caregiver of her brother Tim, who has ALS, for years, yes I said years. She has seen all the tests, watched them change over time, seen all the symptoms, seen the wrong diagnosis, reached out for hope only to see it snatched away. She, if anybody, is VERY familiar with symptoms of ALS, tests results, and all that goes with it.
She has to carry her brother around on a mattress in the car because they do not have a handicapped van. Yet, living the nightmare that a caregiver has to face; she has raised money through walks for ALS, car washes for ALS, gone on TV and given interviews, etc. to raise awareness of ALS and the need for research for a cure.
She has years of experience that no one Doctor could possibly know from reading a textbook or research paper. She could probably write one with more accurate information than most medical schools. Why? Because each and every case of ALS is unique. It is not step 1, 2, 3, 4 and wow it must be ALS.
You, however are studying ALS not experiencing it. When you talk down to those of us who have had years of dealing with this horrific disease, it insults us. We are offended. Your comment to Lorie about
your money was on a disc problem was like telling her she was a idiot for thinking she might have ALS. That is why she said write the check.
She knows from years of experience what is going on with her body is the same thing that happened to her brother and she just wanted to share her fears with everyone here, to garner their compassion and support. Not seek another diagnosis of a disc problem. So she was insulted.
Lorie, just had her other brother Dale have a heart attack and was clinically dead for over 45 minutes, on the anniversary of the death of their father. Oh, and she is nursing Dale back to health too. In the midst of all this she is having some of the early symptoms of ALS just like her brother did, but yet without a DX.
Can you begin to imagine the stress and worry she must be facing each and every day? Can you understand maybe just a bit better how someone with her experience might react to you saying:
We're all thinking about you, Lorie. My money is still on a disc problem. I'm sure taking care of Tim has had a toll on your lower back and could very well have caused your denervation. Our fingers are crossed.
From your
text book comments to her and others, it would help if you considered her experience of living with this disease for years, the stress, fear, anxiety, compared to your studying it for a short time.
A little tact and diplomacy in your remarks would go a long way toward resolving the conflicts.
For example read your comments below and see if you could have worded them differently:
Happy's thread has led me to a question: she had a loss of strength and stiffness in her fingers in the middle of the night but then she stated to me that she regained the strength and mobility in her fingers.
If someone did have ALS (and I certainly don't think Happy does), I'm going to assume that the loss of strength and stiffness would not "go away" Is that fair to say? I'm still learning.
Hello Karin
I just read your first post again and saw that your endo referred you to a rheumatologist after he said you have ALS. He sounds like a complete moron.
He says you have ALS based on perceived weakness of your leg and arm and some twitching? Does this guy know a thing about ALS? My guess . . . and actually . . . it isn't a guess . . . he knows NOTHING about ALS. He is in absolutely no position to give you any kind of diagnosis, especially based on your symptoms.
You had a neuro at an ALS clinic tell you that you don't have ALS. Feel good about that.
That sounds rather harsh, don't you think? I have had Doctors make mistakes before in my own case, but hey they are only human, and can only make those judgments based on their experience. Many may never see a case of ALS, especially a weird one like mine, if they are lucky.
I do want to thank you for apologizing. I think that is a step in the right direction. I only wanted to try to explain to you why your comments may be upsetting to some people. Maybe you can get insight into the thought process we are going through when we read your comments. We are in a living hell on earth, trapped inside a body that is falling apart one piece at a time, while our minds are running full speed ahead.
It is so terribly frustrating, and our nerves are on edge, just waiting for something to come along and push us off the edge. We are like firecrackers with a short fuse sometimes. You just happened to catch us at the wrong time I guess. I'm sorry for that, and I just wish somehow we all could just go back and start afresh having gained knowledge and insight about how each of us understands things.
I know it must be hard for someone with your education to relate to things that are outside the box when it comes to symptoms that are not normal. But, hey some of us are just ab-normal.
Now I will get off my soap box and go back to what I do best, minding my own business and helping those who ask me for help.
You can take care of the rest.