My Neurology Appt TODAY!!!

[VictoriaDouglas83]

Well, I have my neurology appt. today at 11am.  I am kind of nervous.  I wrote down all my symptoms on a piece of paper so I don't forget anything.  

I told my husband last night that I was nervous for today and he asked me why.  I said because I am afraid that he is just going to write me off like everyone else.  He told me to stand my ground and insist that he help me.  I told him it's not that easy.  But I am going to insist that he look into my problems and not just write me off.

I really hope he is a good neuro. even though he isn't a MS specialist.  I just want to get my MRI's and if I have to a LP.  If he doesn't, then I guess I am headed 1/2 way across the state to a MS specialist, since there doesn't seem to be any close to me.

I hope that I can get some answers before my husband leaves on Sept 12th.  I know it's basically impossible to move that fast in this case, but I am crossing my fingers anyway.  

I got some blood drawn yesterday to check for low B12, Lyme and a few other things.  So I'm on my way to rule out things.

I'll post again after my appointment, probably to cry to all of you because he told me I am crazy or something.  Wish me luck and send prayers!

Victoria

[michelleislay]

oh victoria, i am so sorry to hear of all of this.

i thought the neuro had said he would look further even if the result was negative.  i wonder if you can ask the receptionist to pose this question to him/her?

please don't give up!  you are getting closer for sure.

i sure hope the pain lessens and i don't think a few glasses of wine tonight would hurt.

hope your night turns around and tomorrow finds you with renewed energy to battle this all!!!

xo michelle

[Lulu54]

You contact  the place that did the MRI - they have to give you a copy because it is you records.  You should ask them the name and number of the radiologist who received the pics to review or you can ask the neuro for a copy of that report.

Red or white? I hope it helps to take the edge off tonight.

L

[VictoriaDouglas83]

I know this is terrible, I really don't like it.  But I am resorting tonight to drinking a few glasses of wine.  It's not a fix, but I am praying (and I am not really religious, but out of ideas) that at least it will get me through tonight.  

I was wondering who I aask to get a copy of that report and pics.  Do I ask the hospital who did the MRI or do I ask my neurologist?

Thanks
Victoria

[Lulu54]

I'm betting he just read the radiologist's report and did not use his own eyes with your pics.  Be sure to get a copy of your MRI and the report - you will want those as you move on to a different neurologist.

[Lulu54]

No bridges or high ledges, ok?  It has to be such heartbreak to hear that you took this giant step back.

You've been at this for 10 years, so I know you can go a bit longer.  You deserve some answers.

  I'm sorry the MRI evidence wasn't there to push this neuro in the right direction.

I'm even sorrier this doc didn't have the brains to figure this out based on your symptoms alone.  

Hang in there - you know where to find us if you need to vent.

hugs, Lulu

[VictoriaDouglas83]

Okay, so the receptionist at my neurologists office just called and my MRI was negative.  She said the the neuro wants to up my neurontin.  Seriously...that's it?

I'm in tears and pain.  My left arm and leg are on fire and I told them I am in pain and all I get is "we are going to fax your PCP your results".  I'd rather have my leg and arm cut off then be in this pain for 6 more months (they said follow up with neuro in 6 months).  

Although I am happy about not having MS, I am broken because I am in so much pain and yet have no answers and no help.

My eyes are so foggy right now, have been all day.  I feel like my house is filled with smoke.  And yet, I have nothing.  Ugh...I just want to jump off a bridge.

[VictoriaDouglas83]

Hey Red,

I do not know any new information as of right now.  I was hoping to get a call from either my PCP or  my neuro, but alas, I am still waiting. :S

I will post new information as soon as I get it, I promise! :)

Have a good night all!!

Victoria

[RedFlame]

OK we are waiting Victoria!!  If you have info. now or not we want to hear from you:-)

Red

[michelleislay]

hey victoria,

totally understand wanting the results to come back as positive in some regard.  

i think i read in one of quix's posts that she was just so happy to know the name of her enemy.  this makes complete sense to me.

i do hope you get some answers, and then some relief soon!!!

xo  michelle

[VictoriaDouglas83]

Thank you.  I will look those evoked potentials up on the internet and ask about them at my appointment next week.

I am also waiting on my Lyme Disease test to come back.  All the other blood work, vitamins, CBC, and all that came back normal.  

I hope this weekend goes by quickly (they always do even when I want it to go by slowly), but I hate playing the waiting game.  Especially since I've been playing it for way too long.  I'm sure everyone here can relate.

Thanks for the suggestions Red!  I really appreciate it, because I wasn't even thinking about evoked potential, I don't even know what they are yet.  Google...here I come!!

:) <3 Victoria <3 :)

[RedFlame]

It doesn't sound wierd at all to sort of want something to show up on the MRI.  When you suffer for a long time without a diagnosis it becomes more frustrating not knowing than to know what it is.  

I hope that you do get answers soon.  Treatment now can make a huge difference in your life and get you get back to your life and hopefully halt the progression.  

It's a very bid deal that your doc is already thinking about a possible LP in case the MRI is inconclusive.  Also, maybe he will order the evoked potentials too, that could make the LP unecessary.  

There are a number of things that may be done to exclude every other possibility.  

Hang in there and we will be here for you!


Red

[VictoriaDouglas83]

I had my MRI last night.  My neurologist said it would take around an hour to two hours.  It only took 45 minutes.  I hope they didn't skimp on anything.  I don't know if it is a T1, T2 or T3.  I have no idea.

He said I should have my results at my doctors by mid next week.

I know this sounds weird, but I just hope it shows something.  It sounds weird saying it, but I am so sick of being in limbo.  I just want to know what and why and how.  And I really want to start some kind of treatment so I can run around and play with my kids without having to take a 4 hour nap in the afternoon, rest every few minutes and be able to take them to the park even if it is 80 degrees outside.

I'll let you all know what the results are next week.  My neuro said that if they don't know anything that he would like to do a LP on me.  Which I would do, if the MRI doesn't show anything.

Have a wonderful day everyone!!!

Victoria

[Lulu54]

Wow - that is so encouraging.  A neuro who listens is a rare find, so hang on to this doctor.

I'll watch for that update on Thursday - remember to get a copy of your MRI.

be well, Lulu

[Sparkysarah]

Hi Victoria

I am also so glad that your appontment went well today and will wait with interest to hear fow the results from the MRI go...it probably all feels a bit surreal. My dx was very quick and with a fairly similar journey...almost told before any results had come through from what I was presenting with.

At that stage I DID NOT think there was any chance it was MS as I had not had many sx..but they all came on thick and fast afterwards. It is a defiinite rollercoaster with ups and downs so be brave, courageous and although I know a part of you wants to have the answers, still be prepared to be surprised whatever the result as the brain has a habit of running away with us either expecting the worst or denying the possibilty of the worst scenario. It sounds like you are almost expecting or hoping for a dx of MS as then you know what is going on....and I hope for you that this is not the case.

Let us know how the scan goes and fingers crossed. I pray for you that it is not ms.

Love and hugs

Sarah x

[Pablo_Morphy]

I am glad you found a good Neuro.  That's one of the most important steps in dealing with our symptoms, whatever condition we have:  Finding somebody who listen to us and cares.  

Hope you feel better soon.  Keep it up!

Pablo

[VictoriaDouglas83]

Thank you for all of you congrats!  

I am so sorry for you who cannot seem to find a doctor to help out or listen to you.  I know how you feel, I've been struggling for years now, but now that these symptoms have been almost constant for 3 months I was really getting concerned.

The neuro that I am seeing is not a MS specialist, but he seems to know what he is talking about and is looking at every possible conclusion without shrugging me off as a hypochondriac.  He wrote down an entire page in a half of notes as I was talking.  

I really hope that all of you find some answers.  And I REALLY hope that this doctor continues to believe me and help me find some answers.  He also said that even if these tests come back normal, I could still have MS.  I almost dropped my jaw on the floor.  After reading everyones horrible experiences with diagnosis, I was totally not expecting this.

My MRI is Thursday at 8:00pm and 9:00pm.  It is with and without contrast, I have no idea what that means though.  He gave me a prescription for a sedative, only one pill though.  I was hoping he would give me several so I could actually get some sleep.

The things he said were abnormal that were pointing to MS were, my reflex in my feet (babinski reflex I think) (toe pointed upwards), my balance when I close my eyes (I almost fell over, but he caught me) and the lhermittes sign.

I'm sorry to repeat myself all the time, but I just can't believe that it is going this easy for me.  Nothing has ever been easy for me.  It's either he is a really good neurologist or he is just acting like he is a caring doctor so he can get paid and get me out of his office.

On a bad note, my neck is killing me!!!!  And the vibration in my head is really frustrating.

Again, I wish everyone had a positive experience like I had today.  

Victoria

[figuerpa]

I am so happy that you found a Neuro that cares and it is your first neuro. Most cases are not that way. That is why I am going through my neuro and PCP.

Good luck and keep us informed, and wobbly has an awesome idea of asking for copies of all your tests. I haven't but I will now that she mentioned it.

Best wishes
Paula

[Wobbly]

I'm glad you found a Dr that will listen and do something to help find out what is happening to your body.  Wow... sounds like you might find answers with this Neuro.. hope you get your MRI done soon and find answers.

let us know how things progress and when things are happening.... ask for copies of your tests...OK

take care
wobbly

[michelleislay]

wow, victoria, that is awesome!

i had to laugh when i read the first bit of your post, because exactly what you were afraid of, is exactly what happened to me, yesterday!

i was told anxiety, but nonetheless, she ordered an mri for my back/brain as she was concerned about one thing, the band of tightness i've been having.

good for you, i'm sure you presented yourself well and how fabulous to find a doc. who is together in this with you!!!

yayyyyy!!!

[Quixotic1]

Oh, Goodness me!!!  You found a doctor that LISTENED to you carefully, LOOKED at you carefully, and THOUGHT about what he was learning.  You found a jewel.  Also one that knows how imperfect the tools of diagnosis are in MS.

Hearing my diagnosis was indeed a woohoo! moment for me.  I knew I had it and had been shabbily treated previously.  A month later I was less enthralled, but the validation and the name of my enemy were huge for me.

Please keep us informed and ask any questions you need to.

Quix

[VictoriaDouglas83]

I have been struggling with this stuff for nearly 10 years.  It started when I was in middle school, but my dad wasn't to keen with us going to the doctor and spending lots of money on tests when he thought we just had a headache or girly problems.  

Finally after high school, well when I finally got a job that would give me insurance, when I was 20.  I was able to go to the doctor for things like; numbness, pain in my limbs, blurred vision, double vision, spasms, headaches, bowel problems, balance issues and a feeling like I put my cell phone in my head and it was stuck on vibrate.

Recently, in the past 4 months I've had pain/numbness/tingling in my left side of the body.  Feeling like I was walking on stones and it hurt like heck to walk around.  Cloudy mind and a buzzing in my head.  Weakness and fatigue.

I am not hoping it is MS, I am hoping that it is something simple.  My CBC, B12 and other blood tests all came back normal.  I have been fighting to get some answers for a very long time.  So I'm at the point now where I just want a diagnosis, I don't care what it is, I just want to find out what it is so we can start treating it.

Thank you all for your support, answers and suggestions!!  

Victoria

[treebranches]

I'm glad that your first visit with this neurologist went well.  I have no idea how long you've experienced your symptoms or what they are, but compared to most of the stories on this forum, it seems like you're a lot better off than most.  If there were ever a fairy tale story of being diagnoses with a neurological condition, it seems like this is it.

The fact that your doctor outright said you have three worrisome symptoms (all classically MS at that) is a bit strange to me because most doctors, regardless of specialty, don't disclose too much of their initial thoughts until they have done test like the MRI, EMG and lots of blood tests.  Then again, like I said, I don't know your diagnosis journey or how long you've been in limbo.

This all being said, however, I have to agree with Lulu and push the point that while it -is- excited to be heard, feel taken care and maybe even finally get a diagnosis, having MS isn't really a "woohoo" moment for most people.  If you get diagnosed, that's merely the beginning of a long journey and a struggle for some.  This doesn't mean to say that it's a "doomed" diagnosis because leaps and bounds are being made every day, but just try not to get ahead of yourself.  We're here to catch you if you stumble, though, but it's probably best to not stand with your eyes closed if you fall over.  ;)

-treebranches

[VictoriaDouglas83]

I am pleasantly surprised by this doctor.  He seems like a one of a kind so far.  He listened to each and every one of my symptoms.  He asked questions and listened to my answers.

He then went through the whole neurological exam.  Testing my reflexes, motor skills, eyes and watched me walk.  He said that there are 3 worrisome symptoms.  That when he rolls that sharp object on the bottom of my foot my toes flex upwards each time.  He did that like 6 times on each foot.  Then when I held my arms out in front of me and stood with my feet together and closed my eyes I fell over, twice.  And the fact that it hurts when I put my neck down, causes a lightning strike down my back and to my legs.

He is sending me for a MRI of my brain and cervical spine.  They said hopefully I can get in today, but if not it will probably be Thursday.

He also said "sounds like MS", he said it may not be though.  He also said that even if the MRI's come back normal we can do a LP and even if that comes back normal "it doesn't mean you don't have it".  He seems to rely a lot of my symptoms and not so focused on the tests.  Although he did say "sounds like MS".  Woot!!

I'm really hoping it will be today!!!  OH, I'm so relieved that he believed everything I said and didn't discount anything.

Victoria

[figuerpa]

Good Luck,

Stand your ground, explain everything that is going on. Like Lulu said don't mention that you think it might be MS because then they will more than likely blow it off.

Be persistant in what you want. That is what you have to do with most neoros.

I wasn't persistant at first and i am now into my 2nd year of seeing him and still undiagnosed. But I have learned to be persistant.

The last thing I want is to be diagnosed with MS but at least I would have a diagnosis. The not knowing is the part that bothers me the most.

Good luck and keep us informed

Paula