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Time line 101 repost with Quix's comments
Reposting with Quix's comments...sorry to be redundant, but hope this helps anyone who is interestd...
Time Line 101:
One of the best pieces of advice Quix has given to me was to make a time line of my symptoms so when presenting my symptoms to the neurologist, they were concise and comprehensive. She asked if I would post a “How To” for everyone, so here goes…
Warning: This is a bit long winded but if you feel you are being dismissed by the medical world, this could be helpful.
A time line is a much better tool than a long list of symptoms because it can show a clear progression of what has been happening to your body and your life. In the process of creating the time line, you might also remember some things that have occurred that you have forgotten about. For so many of you, symptoms have been around for years, so take some time to get your thoughts on paper. I also looked through my photo albums and that helped me put things in the correct order. I had several light bulb moments and I worked on the time line for several days.
First of all, start with a short statement about the person you are. For me, cycling, weight training, and running was a major part of my life and one day that all changed for me. My first paragraph simply stated how I identified myself 6 years ago, and what I believed to be the day my symptoms began.
The first years of my time line did not have specific dates, but I was able to identify months or seasons when things occurred. Then as time moved forward I was able to be more specific.
Examples:
2002/2003
• Insomnia/Fatigue a constant problem
• During colder months, my feet and hands are freezing. White patches of skin on fingertips and toes
Fall 2003 Lost my balance during a bicycle ride. Fell and separated my shoulder. Had surgery to correct it January 2004.
2004
February
• First appearance of dizziness and “shocky” feelings in head to shoulders/chest.
• Insomnia/Fatigue still an issue
• Overall weakness
• While at work one day, I lost my balance and fell...
• Brain feeling foggy/fuzzy and paperwork/computer work was getting difficult…
March Went to the doctor to find cause for head fog. She prescribed…
May I loved my job and loved my fellow employees, but I started making stupid mistakes. Multitasking was a must in the small office, and if I was having a foggy/dizzy day…
2007
June 27 It was a very hot day; our first floor central air unit was on the fritz so it was warm in my kitchen, and as I was putting dishes away from the dishwasher, I became overwhelmingly weak…
New symptoms early in July:
• “Itchy” feelings
• Burning sensations under skin
• Very small tremors in my hands
July 7 Working in my garden, became overwhelmed with weakness/dizziness, left leg stopped cooperating, and then I fell…
End the time line with another short statement about what you need from the doctor. I stated that I needed answers so I could return to the activities I used to enjoy.
Also, since I had been labeled “depressed” by a physician’s assistant 6 years ago, it has been hard to shake off what I called my Scarlet D. I was far too tolerant of incompetence so I take the blame for that; however, I wanted it clear to my neurologist that I would no longer accept it. I wrote:
“It was apparent that my doctor would continue to be dismissive rather than consider that my symptoms might be something other than “depression.” Since I had been labeled "depressed" by a physician's assistant in Pennsylvania (my Scarlet D), this GP simply continued with that notion. (By the way, she also neglected to see that I had a separated shoulder in 2003, even though there was a golf ball sized lump on my right shoulder.)
It was time to find a new doctor who would try to see things in a new light, so I switched to Dr. Dimmesdale.” (Factious name for posting purposes)
This statement almost forces the doctor to be better than the dismissive doctor (who couldn’t even diagnose a separated shoulder!) and take time to listen to consider that I am not a “head case.” (Quix, I couldn’t resist the term.)
Much of the work I put into the time line was the format. I wanted the time line to flow, have a consistent format so items are easy to find. My time line is 3 pages long, but it is very easy to follow. When I handed it to the nurse at the office, she said, “Wow! You certainly are organized. This is great!” As I talked with the neurologist he looked at the time line and referred to.
When you read posts on these forums so many of us write 10 inches of info without ever starting a new paragraph are hard to follow and the reality is, you usually don't have all those symptoms simultaneously. My initial post was exactly like that!!!! I was so desperate to find some help that I wrote about everything!
Wanna
________________________________________________________________________
(from Quix)
Honestly everyone. I feel that a clear, easy to read and complete Time Line is one of the best tools you can possibly have if you are searching for a diagnosis. You will be surprised at how, after doing a timeline, you feel in control of your information and so much more confident when you go in to see the doc. I recommend that when you arrive for your visit you give it to the front desk and ask that they attach it to your chart and let the doc know it's there. These guys are busy and they may or may not read it before they come in. They may glance at it as they ask you questions. Even if they show no interest (not a great sign, but possible) YOU will have the clarity to answer questions better and you can always refer to it.
When I first developed vertigo I wrote up one that was more than 20 pages long!!! I sent it to a world-famous vertigo specialist (now my Dr.) He read it, made two of my three diagnoses from it and worked me urgently into his schedule.
As you bring up new symptoms, be descriptive about them. Paint a short picture of what impact that symptom has had on your life. If you just say "Weakness" there is nothing for the doctor to picture. But, "My right hip suddenly became weak. I used to climb stairs without a problem, but now I can't lift my right leg enough to completely clear a normal step. I tripped on stairs several times." That is an image that clearly reveals the problem. Tell the doctor what things you can no longer do.
When Wanna ends her paragraphs with ...." it's because there was more to her paragraph, but she didn't want to take up the space on the post.
Don't be afraid to use formatting in the Timeline. For example you can put Month/Year in bold and put bullets before the symptoms. Or use a couple colors to separate symptoms from Dr. visits.
If you complain of fatigue, explain how this fatigue is different than other times when you have been tired.
Wanna is right. Introduce the person you were before all this started and mention what you have lost.
I also think that it is okay to appeal to the new Neuro's ego, by commenting that previous doctors have disregard things, been dismissive or rude. Normal people want to be "better than the last guy."
Finally tell them what you need. eg. "I am looking for a doctor that will listen to me, look at the data, and be able to put things together into a coherent theory and work up."
Quix
Time Line 101:
One of the best pieces of advice Quix has given to me was to make a time line of my symptoms so when presenting my symptoms to the neurologist, they were concise and comprehensive. She asked if I would post a “How To” for everyone, so here goes…
Warning: This is a bit long winded but if you feel you are being dismissed by the medical world, this could be helpful.
A time line is a much better tool than a long list of symptoms because it can show a clear progression of what has been happening to your body and your life. In the process of creating the time line, you might also remember some things that have occurred that you have forgotten about. For so many of you, symptoms have been around for years, so take some time to get your thoughts on paper. I also looked through my photo albums and that helped me put things in the correct order. I had several light bulb moments and I worked on the time line for several days.
First of all, start with a short statement about the person you are. For me, cycling, weight training, and running was a major part of my life and one day that all changed for me. My first paragraph simply stated how I identified myself 6 years ago, and what I believed to be the day my symptoms began.
The first years of my time line did not have specific dates, but I was able to identify months or seasons when things occurred. Then as time moved forward I was able to be more specific.
Examples:
2002/2003
• Insomnia/Fatigue a constant problem
• During colder months, my feet and hands are freezing. White patches of skin on fingertips and toes
Fall 2003 Lost my balance during a bicycle ride. Fell and separated my shoulder. Had surgery to correct it January 2004.
2004
February
• First appearance of dizziness and “shocky” feelings in head to shoulders/chest.
• Insomnia/Fatigue still an issue
• Overall weakness
• While at work one day, I lost my balance and fell...
• Brain feeling foggy/fuzzy and paperwork/computer work was getting difficult…
March Went to the doctor to find cause for head fog. She prescribed…
May I loved my job and loved my fellow employees, but I started making stupid mistakes. Multitasking was a must in the small office, and if I was having a foggy/dizzy day…
2007
June 27 It was a very hot day; our first floor central air unit was on the fritz so it was warm in my kitchen, and as I was putting dishes away from the dishwasher, I became overwhelmingly weak…
New symptoms early in July:
• “Itchy” feelings
• Burning sensations under skin
• Very small tremors in my hands
July 7 Working in my garden, became overwhelmed with weakness/dizziness, left leg stopped cooperating, and then I fell…
End the time line with another short statement about what you need from the doctor. I stated that I needed answers so I could return to the activities I used to enjoy.
Also, since I had been labeled “depressed” by a physician’s assistant 6 years ago, it has been hard to shake off what I called my Scarlet D. I was far too tolerant of incompetence so I take the blame for that; however, I wanted it clear to my neurologist that I would no longer accept it. I wrote:
“It was apparent that my doctor would continue to be dismissive rather than consider that my symptoms might be something other than “depression.” Since I had been labeled "depressed" by a physician's assistant in Pennsylvania (my Scarlet D), this GP simply continued with that notion. (By the way, she also neglected to see that I had a separated shoulder in 2003, even though there was a golf ball sized lump on my right shoulder.)
It was time to find a new doctor who would try to see things in a new light, so I switched to Dr. Dimmesdale.” (Factious name for posting purposes)
This statement almost forces the doctor to be better than the dismissive doctor (who couldn’t even diagnose a separated shoulder!) and take time to listen to consider that I am not a “head case.” (Quix, I couldn’t resist the term.)
Much of the work I put into the time line was the format. I wanted the time line to flow, have a consistent format so items are easy to find. My time line is 3 pages long, but it is very easy to follow. When I handed it to the nurse at the office, she said, “Wow! You certainly are organized. This is great!” As I talked with the neurologist he looked at the time line and referred to.
When you read posts on these forums so many of us write 10 inches of info without ever starting a new paragraph are hard to follow and the reality is, you usually don't have all those symptoms simultaneously. My initial post was exactly like that!!!! I was so desperate to find some help that I wrote about everything!
Wanna
________________________________________________________________________
(from Quix)
Honestly everyone. I feel that a clear, easy to read and complete Time Line is one of the best tools you can possibly have if you are searching for a diagnosis. You will be surprised at how, after doing a timeline, you feel in control of your information and so much more confident when you go in to see the doc. I recommend that when you arrive for your visit you give it to the front desk and ask that they attach it to your chart and let the doc know it's there. These guys are busy and they may or may not read it before they come in. They may glance at it as they ask you questions. Even if they show no interest (not a great sign, but possible) YOU will have the clarity to answer questions better and you can always refer to it.
When I first developed vertigo I wrote up one that was more than 20 pages long!!! I sent it to a world-famous vertigo specialist (now my Dr.) He read it, made two of my three diagnoses from it and worked me urgently into his schedule.
As you bring up new symptoms, be descriptive about them. Paint a short picture of what impact that symptom has had on your life. If you just say "Weakness" there is nothing for the doctor to picture. But, "My right hip suddenly became weak. I used to climb stairs without a problem, but now I can't lift my right leg enough to completely clear a normal step. I tripped on stairs several times." That is an image that clearly reveals the problem. Tell the doctor what things you can no longer do.
When Wanna ends her paragraphs with ...." it's because there was more to her paragraph, but she didn't want to take up the space on the post.
Don't be afraid to use formatting in the Timeline. For example you can put Month/Year in bold and put bullets before the symptoms. Or use a couple colors to separate symptoms from Dr. visits.
If you complain of fatigue, explain how this fatigue is different than other times when you have been tired.
Wanna is right. Introduce the person you were before all this started and mention what you have lost.
I also think that it is okay to appeal to the new Neuro's ego, by commenting that previous doctors have disregard things, been dismissive or rude. Normal people want to be "better than the last guy."
Finally tell them what you need. eg. "I am looking for a doctor that will listen to me, look at the data, and be able to put things together into a coherent theory and work up."
Quix
Guess this is why I don't have my neuro anymore; presented one of these, he scanned it, and never commented on it, just ignored it - other than to say that if I had concentration good enough to write that, there wasn't anything wrong with me.....sigh........which is why he isn't my neuro anymore LOL
Like the way she wrote this up though!
Like the way she wrote this up though!
**bump**
With all the talk, I thought it was time to bump this up again for the newbies trying to do timelines....
With all the talk, I thought it was time to bump this up again for the newbies trying to do timelines....
W-Momma
Thank you so much for bumping this! Wanna is our timeline extraordinare!
I'm so glad it was useful and hope to that it helps our new members!
Thanks!
-shell
Thank you so much for bumping this! Wanna is our timeline extraordinare!
I'm so glad it was useful and hope to that it helps our new members!
Thanks!
-shell
When reading thru this again..I am wondering if the new neuro will take the time to read the story in such detail? My last neuro layed it all out in a timeline sort of way and now I am wondering if I should be redundant and repeat all of it in my own letter. I did write a cover letter of my own and maybe I should go into much more detail about how it has affected me life?? I need some more help with this! Thanks
This is valuable..informative, helpful info. I will be using this format for my timeline when I go to the Mayo Clinic. This has eased my anxiety about remembering everything to tell them and for "telling my story"
Thanks for posting it!
Cynde
Thanks for posting it!
Cynde
Could this be morphed into a new "Health Page" to add to the list for this community? Looks to me like it is information that will always be worth looking up for someone.
Quix posted a great example earlier. I am going to bump this also as it contains Wanna's example. Thanks doni for bringing it to my attention.
terry
terry
This is invaluable, thank you for taking the time to type this out. It is a fantastic idea.
Thanks
Sonaya
Thanks
Sonaya
This is awesome information! Thank you so much. I'd never really thought about letting the doc see a mental picture of what I used to be or what I can't do now.
Thanks for all the time and trouble to write it all out for us.
Nonnie
Thanks for all the time and trouble to write it all out for us.
Nonnie
I agree, this is the best advice I have received too. My neuro's that I have been to never really seemed to care that I went through all of that work but I know that the last one had read it because she referred to it several times in my last visit.
I'll be praying,
Carol
I'll be praying,
Carol
A timeline may be your most useful tool to navigate your way through Limbo Land. I highly recommend one
No, smartass at all. I didnt know about the microsoft word I will diffently check it out. Since, the other neuro I seen I wanted something that would show that it is not all in my head like I think they think. I always seemed to make him mad by answering the question wrong. I dont know much about computers all I know it sure has hlped me out alot. Any advise is greatly appreciated. Thanks so much, Lynette
Could you do your timeline on a computer, so you could use spell check and maybe save your fingers from having to hand write everything.
My writing has changed so much and I actually find it hard to hand write anymore. Maybe it's because I type all the time, I don't know. But heard that it can be a symptom of MS. (Which I already have a diagnosis of)
Anyay...if you can do yours on a computer, using Microsoft Word for example, it can put things in columns for you, change colors, bold type, underline, etc... I'm sure you know all that without me telling you. Didn't mean to sound like a smart a-s-s there. Sorry!
Heather
My writing has changed so much and I actually find it hard to hand write anymore. Maybe it's because I type all the time, I don't know. But heard that it can be a symptom of MS. (Which I already have a diagnosis of)
Anyay...if you can do yours on a computer, using Microsoft Word for example, it can put things in columns for you, change colors, bold type, underline, etc... I'm sure you know all that without me telling you. Didn't mean to sound like a smart a-s-s there. Sorry!
Heather
I was looking thru the forum and found this - GREAT INFO - I started writing things down. My hand writing is not very good since my problems began. I think i will print and use dates and differant colors. GREAT ADVISE - I WILL DIFFENTANTLY TRY TO USE THIS Wish I could do something about my spelling though. hehehe. Lynette
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