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

[jensequitur]

You too, sweetie!  Hang in there!

[MomofTwo83]

Thank you for your advice.  If I do get diagnosed I will definitely be looking for a MS specialist.  We have some good hospitals, U of M and such here...it's a little drive, but worth it to find someone who is a little more knowledgeable than the guy I'm seeing now.  I'm not saying he isn't a good general neurologist...cause he is.  He's never denied me tests or told me I was crazy...but I know he isn't caught up on the whole MS thing.  I know I'd have a better outcome with treatments and medication, if I do get diagnosed, with a doctor who knows more about MS.

Sorry to hear about your back pain lately...I feel your pain.  Since my gait is off, my knee, hip and back all hurt up to my left shoulder.  Back pain is horrible...seems like no matter what position I am in it hurts.  Just gonna try and deal with it till I get the results of my MRI and then go from there.

Hope you feel better soon.
Victoria

[jensequitur]

There's definitely pain with MS - the last three days, I've been having some bad back pain that I'm having to control with Flexaril.

You know, I stuck with the neurologist that dx'ed me for three years.  Even though I knew that he wasn't the best neuro, I stayed with him because it was a lot of work to get referred to somebody else.  He was confused about the difference between spasticity and spasms, didn't really understand my cognitive problems, and thought MS was only numbness, weakness, and weird sensations.  Finally I went through the process of getting that office to refer me to UTSW's multiple sclerosis clinic, and now I've found out how much wasn't getting done.  Blood tests, monitoring, eye tests, supplements - all that was basically ignored with my general neuro.

So even if he dx'ed you, definitely go through the process to get referred to a specialist.

[MomofTwo83]

Well I got home from my MRI about 2 hours ago.  I didn't get anything for the anxiety this time and during the whole thing I wish I had!  Wow...those things are sooooo noisy and just uncomfortable!

I got the contrast this time...although they couldn't find a vein to inject it in but when they finally found one they said they only had to do 3 frames or whatever they said.  Not sure what that means.  

But I was in that darn machine for a little over an hour.  Glad it's done.  Although I hope it finds something, I don't necessarily want it to be MS.  Just something to explain what I'm going through and to prove it's not all in my head!  I'm sure you guys can relate.  

I shouldn't really get all worked up about it, but when I was walking about all the lady said to me was "you held still, you did good".  Cause I told her I had a tremor and my head was bobbing like I was saying yes, so I did my self to hold my head still.  Last time I got my MRI done it took about 30 minutes (without contrast) and they had told me that they didn't see anything worrisome but they would send the report to my doctor.

I know, I know...I really shouldn't think too much into what the radiologist lady said, but she was treating me a little different then when I got in there.  She didn't help me on the machine or lay down, but when it was over she helped me sit up and told me to wait a while before I got off the machine and then asked if I needed help walking.  Ugh...I should just go to bed so I don't work myself up about it.  

In all honesty...I hope there is nothing there...and that they figure out it's just a vitamin deficiency...but I just want the process to be over with already.  Okay...I'm done making a mountain outta a mole hill.

Have a good night everyone and stay warm during this snow storm...here is Michigan it is FREEZING and the roads were pretty slick...but that's Michigan. :)

Thanks for listening.
Victoria

[Sparkysarah]

Just to say that I also think it sounded as if your appointment went Ok and I just wanted to add my support to everyone else's along your journey and hope that the MRI and lumbar puncture go OK. Let us know how you get on.

Love Sarah

[twopack]

Do what you feel is right for you (of course) but I'd let this doc be in charge for a while longer.  His orders are in line with these recommendations of the Consortium of MS Centers (an international group of neurologists and radiologists):

For Patients with a Clinically Isolated Syndrome (CIS) and suspected MS:
Recommendations for the Baseline evaluation:
• A Brain MRI with gadolinium
• A Spinal Cord MRI if there is persisting uncertainty about the diagnosis and/or
the findings on Brain MRI are equivocal.
• A Spinal Cord MRI if presenting symptoms or signs are at the level of the spinal
cord.

There doesn't seem to be a clear indication to order spinal MRI yet.  BTW, if/when that is ordered, it wouldn't include the lumbar spine as the spinal cord ends just before entering the lumbar spinal vertebrae.  No cord = no lesions.

Again, I'd be checking to be sure you understood your doctor correctly about the pain.  Did he really say/mean that pain is NOT a part of MS?  Could he have meant that pain isn't usually the most prominent presentlng (initial) symptom?  Or something else?

You may indeed end up seeing an MS specialist for treatment if you are diagnosed but MS specialists aren't a guaranteed positive experience and I'd hate to see you dismiss a promising doctor on a potential misunderstanding.  

As Lulu said, this seemed on the whole to be a promising appointment.  We can learn a great deal about MS but it will be a long time before we can catch up with the understanding a doctors education gives him.  

Mary