HELP - I am going crazy!!!!!

[dormanmom]

I want to stop looking for something in my MRI disk that I have for a neuro apt. Monday....  It's driving me crazy that I cannot see anything, I cannot even see what the Dr put on the report!   I am trying to be my own Dr. its not working and I am going nuts.

I have a couple bad days and I am certain that I will be DX with MS on Monday and then I have a good day and I wonder if it's all in my head????

I keep wondering....  Hey is that stabbing pain in the side of my cranium that lasted 30 seconds normal?  Is that MS, why could I barely move two fingers last night and now today it's feels tight but doesn't hurt and I can move it just fine... Maybe it's just that I am 45, maybe is arthritis? Maybe I am going NUTS!!!!!  

Maybe its normal to feel like someone is praying a practical joke and holding a lighter to my rear-end while I do dishes (but no one is there)??? Maybe it's just my imagination....

I feel like "hey you feel great" and then the base of my head starts to throb, is that MS... Is it in my head?

And then I cry......  They my eye hurts from the neuritis......  then a friend calls.... Oh I know so-and-so has MS, they've been fine for years.....

It's a roller coaster and I want, no NEED to get off.

[dormanmom]

You know I was reading a book the other day 1000 Gifts and I was taken back by a statement, because it hit home with finally possibly being able to name whats been going with my body...  It said

God's good, Just naming it.... Just naming it.  When you don't have the name for something, you're haunted by shadows.  It ages you.  

I am very glad to finally be nearing a name.

[Sidesteps]

^^^ What Lulu said!  There is no crazy here on our watch.  There are far too many of us that "get it" and our symptoms/concerns were discounted.

I had a change in insurance when I first had issues so I had a new PCP look at me. I addressed the concerns at a physical and was told to increase my water and take vitamin supplements then was also told anxiety. She was completely cold and totally discounted anything I said.

Stay strong. Believe in yourself. You are the one that knows your body. Have Faith in that. :)

[Lulu54]

there will be no going crazy on our watch here, ok?  Keep being sure of yourself and don't take "nothing's wrong" for an answer when you know differently.  Its a long ride for many of you and I sure wish we could get the car into the station faster for you.

hugs,
Lu

[dormanmom]

This does stink,  and Monday seems so far away.

The only findings on the report are "mild enhancement of the right optic nerve just behind the globe, This finding could be due to inflamation/demyelination. Consider followup MRI in 6 months for reevaluation.

I look and it appears like a few spots.... anyway, I will let you know what the Doc says Monday.   It sounds crazy but I actually feel some sort of relief in knowing that something actually is going on.   My family DR made me feel like I AM crazy.    It makes me cry to know that for 4 years now I could have known whats going on and he just wrote me off.   I am looking for a new Dr.

[stillsearching1121]

I feel ya!  I have been on and off the limboland rollercoaster for 6 years now.  The worst part for me is when things come back negative.  I know that sounds crazy to most but getting a negative test results doesn't miraculously make my symptoms go away.  So at some point, any answer is better than no answer at all.  Be prepared for the possibility of no definitive dx...yet.  I hope you get some answers so you can get off the ride and move forward.  I'm awaiting my LP results and I am hoping for the same.  Good luck to you...and know you are not alone, you are not crazy!

[dormanmom]

Thanks, you are so right, I am not trained and I need to focus on something else.  Appointment is Monday. I will give a full report.
C

[Sidesteps]

Hugs. The limboland ride is NOT fun! I was on it for a year and half...

Hang in there. Do you have your MRI report? Can you type it out here for us to see?

[JaneK1975]

I feel you, dormanmom. I have been in the crazy phase myself. It's not a fun place to be. Personally, I had two strategies for calming myself down during the diagnosis process (not sure if they'd work for everyone, but they worked for me).

1. Research the McDonald criteria and MS mimics to become better prepared to understand what the neuro says at the next appointment. For me, feeling the research made me feel a bit more in control of the situation and allowed me to look at my situation from more of a clinical perspective, which was good.

2. Watch a funny movie, exercise, or do something (anything!) that will take your mind off of things. Read a book if you can. The more you worry, the longer time will stretch out to your next appointment.

I hope you get some answers soon. And regarding input from friends- they tend to say strange things that they hope will make you feel better but often make you feel worse. It ***** and I'm sorry. Just know we are all here for you.

Best wishes,
Jane

[figuerpa]

I hope you get some answers when you see your neuro. Reading the MRI scans is impossible to the untrained eye. The radiologist go to school and through tough training in order to see what is normal and what is not normal. It will drive you nuts to try to read the scans so the best thing to do is to just put it aside until you see your neuro.

It is not in your imagination, There is something going on and you will get answers in time. It is so hard waiting for answers but an MS dx is a difficult one, there are so many other diseases out there that mimick MS and they must first be ruled out before they can determine if it is MS.

As for "well so and so's friend has had MS for years and they are doing fine" that doesn't make a difference. MS presents itself to each individual in different ways. I can tell you how it presented in me but then everyone here can tell you how it presented in them and I am sure that some of us will have it much worse than others but that doesn't make it any less painful.

Keep us informed as to what your neuro says okay?
Paula