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.
• 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.
• 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…
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!
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."