Neurologist Appointment Tomorrow!!! Excited, nervous and scared! Sorry for the LONG post...hope some of you read and give me your 2 cents!

[MomofTwo83]

Well I have my 2nd appointment to my neurologist tomorrow and needless to say I am excited, nervous and scared all at the same time.  So much so that my stomach has been in knots all day!!  I think that the MS hug is partly to blame and has been horrible the last 4 days!  I dont' know how people deal with this long term!!  I started crying last night cause it got so bad I thought I was having a heart attack...cause most of my symptoms are on the left side of my body...left arm pain and such.  But I know it was just MS hug and nervous feelings for tomorrow.

Anyway, the last time I saw this guy was in August of last year.  I really liked him at first, he thought it was MS too because I failed the foot test, had L'Hermittes and the strength in the left side of my body was WAY different (less) than my right and I fell over three times when he had me stand up straight with my eyes closed.  Which I still cannot do and my friends think it's hilarious to watch me do it...not in a mean way, but they don't have these problems and thing it's outrageous that someone can't stand up with their eyes closed.  It's gotten to the point where I can't close my eyes in the shower cause I am afraid of falling over in the shower!  Thank goodness for the hand bar I have in there.  Now I just need a seat for my shower cause I'm sick of sitting on the tub...sorry, getting off track!

I really liked this neurologist because he agreed that it wasn't all in me head and ordered an MRI of my brain and C-Spine...not my L-Spine cause my walking was fine...well not anymore!  Plus I'm having bladder problems (can't empty my bladder all the way and it sneaks up on me to the point where I have to run too the bathroom or I'm wetting myself...although it never empties all the way, I also have to sit there for about 20-30 seconds before I even start going, even though I have that urgency!  Sorry if TMI...I just want to air all my issues so I can get some good suggestions of how to approach this guy.

The reason I want suggestions is because when my MRI came back with only one lesion in my brain and my PCP (she is no longer my PCP) she said it was all in my head and I quote "need to exercise 6 days a week and go to counseling".  She thought it was all in my head took me off of ALL prescriptions without a taper!  And so when I went back to my neurologist he read that she said I was stressed, that he said "lets wait and see".  I was heart broken cause I knew there was something wrong with me, my husband knew there was something wrong with me cause he had seen the changes and how I've gone down hill, before he left for Iraq and before we even knew he was leaving for Iraq!  *Had to clarify that because my doctor thought it was because of that that I was stressed and all these problems were going on*.

Well here are the things that have been going on lately with this new flair.  FYI...from October-December I was doing awesome...hardly any problems other than muscle twitching and weakness in my left arm.  I thought..."wow, it was all in my head."  Then in December it was like I was trapped in my own body...and it was fighting against me!  I have to wait about 10-15 minutes after my alarm goes off in the morning just to get out of bed because my legs will NOT listen to me.  They won't move and I feel like I am paralyzed...this doesn't happen every morning, but I would say 3-4 days out of the week.  

Then the new symptom with my bladder...constant feeling of urgency, even though I can't empty it all the way and when I sit down to go I can't start until about 20-30 seconds and feel like I have to talk myself into going!

Balance issues...I run into walls, vertigo has been awful on and off, and have to hang onto the counters or railing all the time now.  I cannot put my left foot all the way down, my heel and back of my left leg have gone numb and feel like they are non-existent...which has been constant in the last few weeks.  So I think as a result of that my knees, hips and back are in HORRIBLE PAIN!!  

L'Hermittes...ugh...hate this.  I have 2 little girls who demand my attention 24/7 and I can't look down at them or look down period without horrible shocks going all the way down my spine to my left leg...which makes my left leg kick out!  

My vision has deteriated even though my eye doctor says my nerves look fine, but have 2 blind spots and my right eye has gotten way worse and had to bump up my prescription for my glasses, light sensitivity *****!!!  

My left hand and arm is more often than not cramped up and my hand is in a fist and wrist is turned in.  My right arm however has more strength, but when I hold it out it shakes...what is that a tremor I think?!  It doesn't do it when I am using it usually...sometimes at the end of the day it will cause I'm tired, but during the day when I use it, it doesn't shake...but when I stop or hold it out it shakes.  

My cognitive abilities, thinking, speech, reading, understanding what someone is saying to me, finding the words...wow...I feel like I am losing it!  I have been asked 3 times, once by a total stranger at the grocery store if I was drunk or on drugs cause my speech was slurred so bad.  My brain doesn't compute what someone says to me right away...so I always ask "what? or pardon me?" and then a few seconds after that I'm like "never mind...I understand you".

Bladder Issues:  Constantly feel like I need to go, and often have to run to the bathroom!  When I get there I can't go right away...like I'm nervous or something and takes about 20-30 seconds for me to work myself up to going.  And it never seems to empty my bladder all the way!  Also have bowel problems, started since middle school though, so I don't know if I can contribute those to MS symptoms.

Sensations:  I have sensations on my thighs mostly...mostly left thigh.  I feel like I have wet myself...it's all warm and tingly.  I have to check myself all the time.  And have gotten to the point where I have to wear things all the time because I am worried about wetting myself.  Also have shocks and pins and needles off an on all day in my left arm and left leg primarily.  Sometimes I feel like it's in my right side too...but mainly I notice it in my left.

Spasms:  My legs, arms, back and stomach spasm all the time...painfully and to the point when it's done I feel like I have just done a very extensive workout...sore and weak.  It wakes me up at night!  I hit myself in the head the other night cause my arm was spasming so hard!  The worse is when my back or stomach start doing it cause that is just painful and makes me feel sick to the point where I think I might throw up!

Well that's all I can think of for now.  I guess I just wanted some inut on how to approach my neurologist with all this, since he is the one I saw last time who basically dismissed me because my PCP at the time wrote that I was stressed and needed exercise (mind you I was a size 12, 5'5" and at 160 lbs....now size 10 got down to 152)  I don't think I'm obese, but could stand to lose a few more pounds definitely...but cant understand how she dismissed my symptoms on me being overweight!  I was mad and I'm just worried about being dismissed again, cause honestly I am stressed, depressed and have anxiety...but because I feel so horrible all the time and don't know if the next day I won't be able to walk or will fall down the stairs with my 2 year old.

So please, if anyone can give me any suggestions on how to approach my neuro tomorrow and have better chances on him not dismissing me that would be awesome.  I am hoping he will start me on something to treat the symptoms at least because it's been horrible lately!

Thank you all!  And sorry again this post is so long.  I tried to break it apart so it's easier to read.  Thank you all!!!

Victoria

[MomofTwo83]

Well I just got home from my neurologist appointment.  He has me scheduled for a MRI tomorrow at 6:30pm...just of my brain which made me a little mad, but didn't want to fight with him about it and I could stand up straight with my eyes closed and he saw how I was walking not being able to put my heel down without falling and back of leg being numb.  He did say with and without contrast this time and it is at a hospital that has 3T machines, so that I am happy about.

My LP is scheduled for Feb 17th...I went along with it just so it might show some proof.  Since he still didn't give me anything for any of my symptoms, which *****...but I understand them not wanting to pump me full of the wrong medications.  So I didn't push for anything.

He did however say something that made me question his knowledge of MS at all...cauase I told him at times I have really bad pain.  He said "well I think MS, but pain isn't really a symptom of MS patients" or something like that.  So I thought...wow...obviously he doesn't know anyone who has MS.  He also noted my tremor in my right arm and memory issues.  So hopefully it will show something...I just want some reason for this...I'm sure a lot of you can relate.

When he said he wanted to do another MRI cause he suspected MS, I asked "didn't the last MRI rule out MS".  He said "some times the MRI's won't show anything at first, so it doesn't really rule out MS".  I knew that, but was playing stupid cause I didn't want him knowing I was doing my own research so he wouldn't think I was convincing myself I had anything.

Thanks for all the suggestions.  I'll let you all know how it goes.
Victoria

[twopack]

Lulu gave excellent advise and you have a very good start.

I would just be careful not to approach this appointment with a defensive attitude.  The neuro has seen some signs in his past exam.  It's not very unusual for them to want to wait and re-evaluate six months down the road.  State your symptoms simply.  Share how it limits your life.  He'll ask questions when he needs more information.

Example:  I had been feeling so much better for a few months.  In December, everything started to fall apart again.

I lose my balance when I close my eyes.  It's gotten so bad that I sit down to shower so I won't fall.  Even with my eyes open I've bumped into walls because everything is spinning and I'm off balance.

I'm having lots of bladder problems.  Urgency hits and I can't get the the bathroom fast enough and leak (say how much).  I've had to start using a pad to keep my clother dry.  At other times, once I get to the bathroom I have trouble getting the flow started and don't think I'm getting it all out (give the reason you think this).

When I bend my neck to look down I get a shock down my back and into my leg.

My vision is blurry.

My legs sometimes won't move when I want them to.

This arm (left) cramps and this one (right) shakes when I try to hold it up.

In general, I get weird sensations in my legs and muscle spasms that are painful.  It's been very hard to get my daily activities done.  It's even harder to enjoy life right now.

I'd give this guy every chance to prove himself as caring and knowledgable.  Don't try to guess at why he asks a question.  Just give honest answers.  And yes, it can be very helpful to have someone along to back up your account and hear what the doc is saying.

Good luck and let us know how it goes.

$.02 plus.
Mary

[wiggles94]

I want to wish you luck at your appt tomorrow.  Do you have anyone you can  bring with you that could help relieve your stress and take notes for you?  It's so hard to listen well if you are stressed.

Also, make sure you bring your list of questions.  Don't leave the office until they are all answered, and you have a plan to move forward - you know how the doc is going to help you get to the bottom of what's going on.

Present your symptoms in a very matter of fact way.  And Lulu has a great idea - not mentioning the internet.

If things he's saying don't make sense to you make sure and ask for clarificiation.  A good neuro should be used to dealing with patients that they need to repeat or clarify things for.  Don't worry at all about his schedule - take all the time you need.

Assume that he will help you, and if you feel invalidated or like he isn't helping, then state that.  What you don't want to do is leave being frustrated.

I have a follow up with my neuro on Tuesday so I know just how you feel.  It's good for me to be thinking about all these things as well.
Best of luck.  I'll be thinking of you tomorrow and praying you have a great appointment and get some answers and help/support!
Carol

[cainer]

wow!!  hi!!  i have to say being overweight will not make you walk in to walls -unless someone is way over weight- gosh , the warm feeling, you have said so many things that i do,  
but if they give you a dumb answer- get another -one that is good!
  hang in there!! tick

[Lulu54]

Hi victoria, you did a great job of breaking this apart and spelling out your problems.

Any neuro is probably not going to give you the time to review all of the probnlems you have outlined here, so you need to focus on the ones that are most troublesome.  Make yourself a list and hand it to him if you have trouble expressing yourself with the doctor.

A key part of this is to be sure to tell the doctor how these symptoms are impacting your daily living.  This is even more important than the symptoms themselves.  Obviously at the top would be trouble taking care of your children because of the L'hermittes.  

Also, don't mention the internet, at all.  Since they have already flagged you as stress from your husband's deployment you don't want to muddy the waters any more.

Your mixed emotions about the appt tomorrow certainly makes sense - I sure hope you can move forward when you see this doctor.

good luck,
Lulu