Why I am here

[Quixotic1]

To anyone who reads my posts:  When I answer your posts I do try to be accurate in what I know, distinguishing it from what I believe, and try to let you know when I'm offering an educated guess.  I also have some opinions in areas of controversy.  My background is that I was a general pediatrician for 23 years, mostly in poor regions.  I had to know a little about an enormous range of things.  When I actually had patients with a given problem I learned a great deal more about that problem.  My specific areas of specialty were with premies after they left the NICU, multiply handicapped kids and coordination of their care, and some immunology/allergy (in which I did my post-MD fellowship)

A lot of my knowledge in Neurology has come recently from self-education when I started to lose motor function very rapidly and was "blown off" by a neurologist as being a crock/malingerer.  That was devastating to me.

My specific, current interest is in the process (which is ever-evolving) of making the diagnosis of multiple sclerosis when the evidence (MRI) is not diagnostic.  

The other thing that has happened is that, in answering these posts, a part of my brain that I had put to sleep has awakened some excitement (medical knowledge, helping people, feeling good to be able to give answers, and, yes, also feeling a little important and appreciated.)  So some of what I am doing here is self-centered.  On the other hand, I benefit from hearing what others are going through.  It gives me more insight into my troubles and maybe I can offer some into theirs.  I suppose it's why we are all here.

I want to write up my story because through it I have learned a lot about the variations in presentation of MS, the limitations of many neurologists on the subject, the controversy about how important the MRI findings are, and I have ideas for where people can look for answers.

The problem is this.  On May 9th I logged on to write my story.  Then I kept finding questions that I knew a something about and ended up writing things all day at the computer. When I look at the forum from 05/09, mostly I see my screen name. I hope none of you felt that I had arrived and started to dominate the forum.

Because of chronic vertigo (another topic on which I know a lot), reading and tracking with my eyes makes me sick and I spent all of yesterday in bed. I have excrutiating fatigue and frequent mind fog in addition to the dizziness and nausea.  I'm better today, but I'm going to have to limit what I do each day or I won't be able to do anything

I wish BobbHilton was still around, because I do not know anything about most of the questions asked here.  I can't believe the suffering I see.  Please do not let my posts stop anyone from posting.  It seems to have happened and that is the last thing I want.

Quix

[worriedinalabama!]

Quix:
your were wonderful in your very in-depth analisis on my test results, I thank you soooo very much from the bottom of my heart that you not only answered to the best of your knowledge, but also you gave me incouragement when I most needed it. I am very sorry for your suffering, I too know the problems that can be swept under the rug by some doctors. I am still going to have to have more tests done to figure out what is wrong with me, but what you did yesterday was give me a little bit of peice of mind, and I got a great night sleep. If there is anything I can do for you just let me know! if you would like to im me, my addy is dawm-***@****.
again thank you Quiz, you are doing a wonderful thing in here!

[Annie62]

Quixotic,

I have been reading some of your posts and I know that I, for one, am glad you are here sharing your time and knowledge, especially since you have significant health problems of your own.  I read in a post recently that you were dxd with MS/probable MS?  I didn't know you had gotten a dx since you first posted on this forum.  I remember several months ago you posted a question to what you thought was the doctor-patient forum, but it was actually this forum, and I responded to it.  I didn't realize you were a physician at the time (and didn't add anything helpful to what you already knew, I'm sure).

And I don't think you need to worry about "dominating" the forum.  I think one reason there aren't many responses other than yours to all the people posting questions is that there seems to recently have been a big influx of a lot of new people posting questions/needing answers, and it is overwhelming-I don't know where they all are coming from!  Before there were only a couple new questions a day, but now there are probably 10-15.  I haven't stopped reading the board altogether but trying to read all the posts is overwhelming--and taking the time to respond to any of them is even more time-consuming, especially if it's not a subject I know anything about.  Also, I hope you are not put off if those of us who are *not* medical practitioners (and especially not physicians, as yourself) share on this board what we have learned from our own reading/self-education and experience.  I do try to be careful about what I post, to make sure of the facts and to qualify what I write in some way so that I don't mislead anyone.  

And I hope you do limit-if you need to-how many posts you answer, not because I don't want to see you post, but because I don't want to see you get overwhelmed (as I am sure Dr. Bob was) and burned out/worn out, and then quit posting altogether--especially if you suffer from major fatigue.  Even though you are not a neurologist you are a *real live MD,* and that is obviously the next best thing!  And you also have a neurologic illness/problem as many others on this board. I have to say, though, I found it absolutely amazing when I read that, even though you are a physician, your neurologic symptoms were written off by your neurologist/fellow physicians as (I presume) psychsomatic.  I didn't think that sort of thing ever happened to other doctors, but apparently I was wrong.  Let me guess, it was a male neurologist.  From my own experience, I saw five neuros since '99 (prior to my semi-diagnosis a few months ago), four men and one woman, and all five including the woman thought there was no organic basis to my symptoms (if they didn't outright tell me so they wrote it in my notes), but the men were the absolute nastiest/intolerant/impatient with me; the woman neuro didn't believe me, either, but at least she wasn't a bast***.  She just kept saying, "Gee, I don't know what's wrong with ya, it's a mystery!" (LOL).  Then she sent a copy of her note on me to a woman psychologist and said I agreed to see this woman  (she never even mentioned it to me!).  Reading that you, as a physican, were discounted by your doctors makes me feel better (I hate to say that, but it does)--even though I am truly sorry that that had to happen to you, too.  It seems to be a universal thing with (especially) neurologists.

I wish Bob Hilton was still around too.  I thought he was going to try to post on weekends, but it looks like he hasn't had the time/is otherwise involved in his new practice.  I didn't realize he was starting up a practice for the poor/free clinic sort of thing.  I thought he was returning part-time to his old practice.  Good for him-he's a good person.  You mentioned that you, too, mostly practiced pediatrics in poor areas, I believe.  By the way, my brother is a family practitioner (went to Washington Univ. School of Medicine in St. Louis) and has worked in poor rural America all his life.  He still practices but he is not in good health himself (just barely an ARDS survivor due to a really bad car accident 10 years ago and courtesty of an arrogant trauma surgeon who would not listen to my brother's concerns and request to be put on antibiotics for his lungs due to his fear that he was going to develop respiratory distress--which is what did, indeed, happen).  That is a big part of why I did not continue to bother him much with my problems/symptoms after his accident, especially in recent years.  He works on a Blackfeet Indian reservation out West.  He is absolutely the antithesis of the arrogant, smug doctors (especially neuros) that I have encountered in my pursuit of a diagnosis.  

Well, I need to end this long post.  It is hot as hell in my computer room (no ceiling fan in here) and every time I come in here to sit down at the computer I start having hot flashes.  I can't afford to turn the air down and I can't open the windows because my entire state is on fire.  But when you have the time-and if you would like to share, I would like to know more on your thoughts about MS, MS with negative MRIs (are you definite or probable MS?; did you have an LP as well and is your MRI positive or equivocal?  I think you said you had UBOs on your MRI in the past).  

[tragdysangel]

Can you PLEASE read my question  on 05/13 tragdysangel it's 2rolls from this post I hope you can give me some peace of mind until I can get back to my neurologist in July.  THANKS

[Lcrandle]

Thank you for taking the time to read my post and answer it....i will make that appt to see a specialist!!!   Keep up the great work here!!!!

Laura

[alchris]

Hello

You definelty are so right about people searching this forum.  We are all here for the same reasons, finding our own diagnosis and hoping to help others in the process.  Continue to do what you do.  I know I like to see what others are saying in return to how others feel.  I know some people disagree and want to know what credentials some have who answer, but Me personally it doesnt matter to me as long as the concern, and advice shines through, that is again why I hope we are all here.  I actually feel in my heart that the most of the people on this forum take more time and have better advice than most doctors.  No offense to you or anyone being a doctor, it just has been what I feel and see in my own experience trying to solve my own health issues

Continue to answer and much as your health allows, you never know who might get helped in the process.

Wishing everyone here help for themselves and family.

[catwolf]

In reading some of your posts on here, I see how helpful you've been to others, including me.  I cannot tell you how much that is appreciated (even if you have self-centered reasons, too! I'm glad that you do!).  I'm new here, but this board seems to be about giving AND taking.  Sharing what you know or maybe just a few, kind words of encouragement is sometimes the boost people need.

Thank you for being here and sharing what you can!  I could never see that as a negative thing.  

Kat  

  

[economist]

I am new to this forum and had no idea about your background or your own problems with neurologists. All I know is that after seven years of going round in circles with various neuros and other doctors yours were the most sensible comments and suggestions I have heard. I am grateful for them and If my experience is anything to go by your posts will be of help to many others.

[rainsummer]

Quixotic1, I think you do well to answer questions as you can. Dont worry what anyone thinks..if it helps one person  ...thats a good thing.

[Quixotic1]

Thanks for your comments, I really didn't expect responses.

I EXPECT most of the people here to be non-medical, but to have a great interest in one or more areas.  Interest leads to searching and searching leads to knowledge.  Also living life gives one a great deal of experiential knowledge and it's always good to share that.  Only if I find someone really off base will I try to shed some light.  I try not to step on people's toes in areas where there is just a basically different attitude or philosophy.

As for feelings that all doctor's communicate poorly or that they don't care: It's been my experience that physicians run the same gamut of traits as every other group of people.  They vary from brilliant, honorable and compassionate, to earnstly hard-working, to mediocre, bored, burnt out and overworked, to incompetent, avaricious and just plain criminal.  I could say the same for all professions.  I will say that, in general, they are overworked.  I blame this mostly on insurance companies to who we turned over control of the profession a couple decades ago.

I don't take offense any more, but I bristle at universal generalizations.  I have actually met and now see, an incredibley knowledgable and compassionate neuro, so I know there are exceptions.lol.  I have also worked with docs who rank with angels, so I know some are out there.

Quix

[tragdysangel]

I recemtly have been having those problems for about 6 months to a year they come and go . I have had eegs done a they all come back normal. The systoms have gotton worse in the past 3 months the numbness is worse when I have the eposides than others. And yes I have seen a a neorlogist for about 10 years now. I also have bad jerking mostly on the right side. The doctor never has always question epilespy and has told me that I had spinal fluid leakage.

Yes my granfather had Parkinston diease. but thats all that I know of.
I did'nt tellyou that when I was 3 Years old I was burnt over 50 percent of my body with 3r/d and 4t/h degree burns they give me blood I got hep. C from it could it be possible that i got the virus that causes ms then.

[nanner500sl]

I logged on here for the first time on 5/10.  I couldn't believe what I was reading.  Thanks to you and some of the other posters, I felt comfortable in sharing my situation (posted 5/10).  I never dreamed that I would become so ill and then have the doctors say they have no idea what is wrong.  I also have unbearable vertigo(?).   Sometimes just thinking about reading sends me for a loop!  I am a successful business woman who now can't even think about doing the things I use to do not to mention the things I need to do.   I hope you continue to help, console and just listen.  Although it is sad to see soooo many people in various forms of pain, it is also comforting that there are people to share their pain with.  

[1twitching]

Quix,

I too am a medical professional ( a pharmacist ).  Thanks for helping, it seems when we practice we are prohibited from saying what we truely think due to legal issues.  If I can help you or anyone else with something that I am sure of please dont hesistate to ask.  

Cheers!