Wouldn't it be wonderful?

[Deb61]

The information I've gained from you has been extremely helpful.

Have you ever considered writing a book?  You offer so much, as an MD with MS.  This unique perspective can only be offered through someone with MS and with a doctorate in medicine.  

I wish you would consider.  For example, within just a short time today, I've learned several things that I didn't know about from research on the Internet and the books that I've already purchased.  I wished I would have known this information about relapses and remissions--it would have saved confusion as to what to be concerned about to make sure it was mentioned to my neuro.  I didn't know that the symptoms didn't have to constantly throughout the day.  

This is just one thing that I've learned about today!!!!!!!!!!  There have been countless other things about LP's, MRI's, medicines . . .

I hope I didn't embarrass you, but I hope you really do consider.  There's no reference book I can think of by an MD with MS that has gone through h*** and back to get a diagnosis.  

Wouldn't it be wonderful for people in limbo or with MS to have a book like this?

Deb      

[Heartshome]

This is a great idea, one that I feel would provide a great deal of information that either isn't "out there" already, or is scattered around in numerous places, thus making it difficult to find.

I would be very happy to help read, edit, etc. (That is my background from a professional standpoint.) Let me know what needs doing and I'm there for you!

Lisa

[Rena705]

I think that this would be doable and I really think that many people would benefit from something like this...not just people with MS but their families and friends as well.  There is sooo much that is not talked about in any book or on any website (other than ours of course) that could be so helpful to many!

I would consider assisting with a project such as this if I was wanted and I think that asking for suggestions is a good idea but I think you will have to draw the line somewhere.  Would this be a book that would deal specifically with the medical side of MS or would it include the emotional tumoil that we all deal with and how we have managed to survive it?  It is a very interesting concept and I would like to be counted as very intrigued!

Rena

[Deb61]

I am headed out the door for my neuro appointment (out of town) and will be spending the rest of the day visiting my sister, but wanted to say that I am very excited that you're thinking about this.  I do think this is doable--I know there's a lot of people on this forum that will help!

You don't dumb down things, but you do explain things in a way that a person of normal intelligence (like myself) would understand because details are included and not hacked out.  

I wish I can talk more, but have to go.  

Deb

[Quixotic1]

From all that you have so far said, a book using this forum and it's collective experience would be useful.  Use our stories, our "delicate topics", our expertise in helping the lost out of limbo, my blurbs, sort of like telling our family story.

Sort of an "MS For The Confused, The Undiagnosed and the Curious."

You're all right.  Much of this is already written.  Funny, Deb, that you feel that what I have written is not dumbed down.  Not that I would ever try to "dumb" anything down, but most people say that it is written for the non-scientist and is clear.  Is there a difference?

For a lot of it we would just have to cull our own archives.  It would have to include a section on dealing with arrogant and dismissive doctors and on ways to self-advocate.

If I continue to feel better, this might be doable over time.  I have been taking about 8,000IU of Vit D daily for the last three weeks and been more religious about my B12.  Now, if I can just cut out the bad carbs, I might have enough energy to start this.  Once started it would carry itself, I think.  I could print the draft in my journal and make it Friends Only, for critique and editing.

I would need help, though.  Suggestions, editing, looking back through things that could be included, people to look at the books already out there and see what "holes" we need to fill.    The danger is that I would have less energy to expend here.

How does this sound?

Quizzically interested

[Rena705]

Most of you know what I have gone through with the lying gp and the evil neuro but I am willing to bet that each and every one of us, before we began to have symptoms, had the utmost respect for physicians and believed that they were looking after our best interests.  Am I right?  

Personally I was in for one h*ll of a shock to find out that doctors are human and can be just as catty and self centered as the rest of us and for the most part are quite capable of shocking us into finding out the truth.  I truly believed that my doctors cared about my health and that they took an oath to ensure that I was going to receive the best healthcare possible.  Now I feel as though I have a permanent S tattooed on my forehead for SUCKER!!!

I don't honestly feel confident about anything a doctor tells me anymore because I have been lied to, deceived, denied care, denied my diagnosis and denied the meds that are so important in slowing down a disease that, at this point I fear may take my eyesight!

Personally I believe that a book explaining that doctors are not the "gods" we perceive them to be all our lives would be a good eye opener for the public and possibly prepare someone facing a serious diagnosis of MS for the "lies my doctor told me" scenario.  It really was a slug in the stomach to find out that my doctor was blatantly lying to me about letters sent for referrals and forms not filled out for my disability insurance.  This is MY LIFE for crying out loud and just who the h*ll gave any dr. the right to play with my life in this manner?  I guess I did because I unknowingly allowed this facade to continue because I trusted my doctor...SUCKER!!!!

Am I bitter...H*ELL YEAH!!!  I don't believe that I am the only one that has had to undergo treatment like this and I know I won't be the last...I sure would like to be able to warn the next person though that this is possible and that your doctor should be followed very closely so that it doesn't happen again.  

That is my story...I feel ripped off, abused and very sad that I am just a person with a diagnosis of MS that can't get the care she needs because of a lying gp and an evil neuro.

Rena

[Deb61]

Quix--You know, I think a book about your own experiences and some stories from this forum, and some of the things that doctors don't tell you about MS/getting diagnosed would make for a very interesting book, too.

I hope I've inspired you a bit--you've got a lot to offer others (of course you already have made a huge impact on others' lives on this forum).  I know writing is time-consuming, but it is a great diversion from when things get tough.

Everyone--I'm still hoping that others will chime in with their ideas . . . They needn't be shy.  Brainstorming is a process of thowing out ideas, no matter how ridiculous they sound.  Great books sometimes come from a tiny speck of an idea from a brainstorming list.

Ideas, anyone???

Deb

[Deb61]

You should write a book about your experiences!  You have a really scary story to tell--and it's all true!

Deb

[Deb61]

ANYTHING on MS.  There's so few books that aren't dumbed down for a fourth-grader to read or rehashing old stuff.  What's out there is BORING and KINDERGARTEN material.

There has been so much, picked up here and there that I wish I'd known about.  Having that information would be really good.  Plus, I've always appreciated that you've never dumbed down the information.  

I'm sure that with a collective effort, our forum can put together some great ideas.  Maybe we can do a little brainstorming first.  Perhaps a new thread with a brainstorming list of ideas should be made?  

You already have some health pages with lots of great information on this forum:  

1)  How MRIs Show Lesions in MS
2)  Lesions vs. Symptoms
3)  MS Information and Resources
4)  Common Multiple Sclerosis Drugs, Medications & Treatments
5)  Categories of MS
6)  Multiple Sclerosis in General
7) MS Fatigue
8) Muscle Tone and Spasticity
9) Why an MS Specialist?
10) Measuring The Tendon Reflexes
11) Can you Diagnose MS with an LP that is Negative for O-bands?
12) How Can a Person with MS Have a Negative MRI?
13) Anatomy of Flare-up & Comments about Heat & MS
14) Behind the Diagnosis of MS
15) My family doctor says I may have MS...what do I do now???
16) What is the difference between the old and the new MRIs?
17) Doctor Visit PREP - Be Prepared!
18) Stay Open to the Possibilities
19) The old familiar, dreaded RELAPSE....
20) How does an MRI work?
21) What I want my family and friends to know

Here's a couple of other ideas:

1.  Differential diagnosis
2.  Surviving limboland
3.  Is it all in my head?
4.  Where do I go for support?
5.  The spinal tap (explanation of the O-bands and other markers for MS; avoiding spinal headaches, blood patches, etc.)
6.  Future medicines
7.  MS meds (tips for avoiding pain & side effects)
8.  Blood tests
9.  Evoked potentials
10. Optic neuritis

There can be tons of first-hand stories that can touch on and give examples for the information that you want in your book.  This is something that other books have offered, but it's missing medical guidance and useful information.  

Just some ideas.  I'm sure our talented forum members have some ideas!!!!!  Pus, I bet there are people willing to share their stories (some of whom have on the Welcome page).  Names can be changed to protect the innocent!!!!

I think this would be awesome!  Keep in mind that a book doesn't have to be written within a certain timeline.  You've got all the time you want to devote to it.  

I'm going to put on my cheerleading costume.  I wrote a novel (not published--just wrote for the enjoyment of writing) that I finished a couple of years ago.  I set a goal--a chapter each week.  When I finished, my next goal was to revise/rewrite two chapters a week.  I've gone above and beyond my goal every week and have rewritten that book over twelve times!   So, if I can do it, anyone can.  Rah! Rah! Rah!  LOL

[santana8]

I think this is a wonderful idea!   Not only do I think you are qualified to write a book, I think it would be a best seller!  I have written poetry for about 10 years ,  and have even had a few offers to publish a couple of them.  They wanted me to travel somewhere far away for an award, but this was right at the time that I got sick!

Since I have gotten sick and entered into this world  with all of my new friends here on the forum I have pondered on writing a book about my experiences, but I don't have a clue how to go about the process.

If I ever do write a book then I would want to focus on the phsyciatric aspect of this situation. I would like to advocate for the patients, like me who have an anxiety disorder and who develop  a neurological illness, only to have the doctors try to pass it off as being related to the anxiety disorder.

I have read about a couple of cases that were exactly like mine, where the patient was thought to have a conversion disorder, or have histerical blindness and sent to a phsyciatric unit instead of receiving the medical care that they needed for the brain damage.

This is wrong for doctors to automatically assume that a patient who has any kind of history of anxiety, cannot develop a neurological illness, and that this is responsible for thier symptoms and not anxiety!

I hope you do write a book!  I know that you have suffered as much or more than anyone on this forum.  It must have been hard to devote so much of your life to becoming a physician, and to have it ripped out of your grasp by this disease.

I am a person who believes that things happen for a reason in life! We may not understand them at the time that they happen, but in time usually the answer will become apparent!

I think that you are right that you were meant to be here on this forum, helping so many of us that would be lost without you!  You are still doing what you were meant to do, and that is to be a healer, a help to others. It may not be in an office with your name on it, but you are still doing what you love!

I can hear the passion in your comments to the ones here who reach out for help, You stretch yourself beyond your phsical limits to help others. This is only a passion that a doctor can have!  We are lucky to have you here, and are thankful for  all that you do for us!

~Santana~

P.S.  I would name my book:

My Eyes Don't Lie, My Doctors DO!   lol!!!!!

[Quixotic1]

I suppose we could kick it all around and see what books there are out there and what their focus is.  Maybe with a group effort we could get a book off the ground.  I know some of you have collected and filed stuff.  What is it that WE offer that the books already out there don't?  (you can tell I'm intrigued)

Quix

[Quixotic1]

You are very kind and I'm thrilled you are getting so much out of this.

There are at least two books on MS written by MD's or other medical professionals with MS.  I don't know what their focus is, but I suspect it is the factual stuff that I am also writing.

The only book I would really want to write is one discussing the very common attitudes of medical professionals, especially neurologists, toward any case that is not immediately clear.  It would be one that focused on the undiagnosed and the diagnosed, who feel their attention and care is not what it should be.  So, it would focus on self-advocacy with the medical establishment.

In some ways, the things I collect and write have this in mind.  My provisional title is "Lies My Neurologist Told Me."

In reality, I'm not sure I am capable of such a task.  I can barely do what I need to do here sometimes.  I have many times made promises to do something and then been unable to carry them out.  So, unless I had a keeper (personal assistant) I don't think it is feasible.  And I have a whole lot more topics to write here.  I probably should be collecting all these stories, for such a goal, but I haven't.  It would take me months to go back and recapture all of the great data.

This forum is my top priority.

Quix

[Deb61]

I'm such a numbskull.  I forgot to mention in the subject line to whom I'm addressing this to.