Results of VEP and SSEP

[ack65]

So the results of my VEP and SSEP came back normal.  You may remember that we had to argue with the Neuro to get these and he only orded them to get me and DH out of his office and now he can be done with me because I am perfectly normal (aside from my symptoms and my hypersensitivities in my brain mri that are nothing).

So I saw my GP today.  She was going to send me for a second opinion to the ms clinic but now, since I am so normal, she is hesitant to do so.  I got the "some people have pain and it is likely fibromyalgia (the rheumy said it wasn't) or myofacial pain syndrome" talk.  I started to cry because I was sooo frustrated and then she told me I could up my antidepressant.

I tried to explain I'm not depressed, just frustrated.  I told her about the "ms hug", of course didn't use those words, pain I had last weekend and I have been having horrible spasms.  I guess I just don't explain it well enough because I keep ending up in this same place with no one believing me and no where to get help.

The GP doesn't want to put me on any other medication, so I just have amitriptyline which is helping but doesn't deal with the stiffness and spasms or the stabbing face pain.  She wants me to get up and exercise every day.  There are days I can barely lift my legs up the stairs.  I left crying and forgot my prescription - just great now I'll have to go back.

Sorry to be such a downer but I have decided that I am done with the doctors.  Whatever is wrong with me appears to have no cause so since my tests are all normal I am just going to pretend I am too.  I told the dr that I get up everyday and push through the pain, exhaustion, and unpredictable symptoms because what other choice do I have.  I guess because I still work, and look okay, and all my tests come back normal that I really don't have these symptoms.

So the medical system wins as I can no longer continue the battle - I just need to accept that I am perfectly healthy and move on.  Thanks to all of you for your support through this journey.  You are such an awesome group of people and I have learned so much from you all.  Anna

[tonyad]

    Good for you!  A breather and some relaxation is the RX for this weekend  :)
As far as you knowing your body better than anyone else......You ALSO have to be your own BEST advocate!

      If they are not listening to you / taking you seriously, then I would not give them a dime of my money!  Remember, they work for you!!   One thing that did help was to copy off material from the Health Pages as well as I copied off some of Quix's posts that were so informative.....Let me tell you, I got "BRAVE!"  Lol  

     I went in there with all the Artillary / Ammunition I needed!  Then when I finally went to a well know MS Neuro...I did not even have to pull it out..Go Figure!...Point is, I was READY!  Lol  

    You will know when the "RIGHT" time is to go to the right doctor and find the answers that you need ;) and Deserve!

So go and enjoy your extended weekend and Relax...No Worries!

~Tonya
    

[ack65]

Thanks Tonya,

I am going to go away for the long weekend and take a breather.  I think learning anything more about ms, or any disease, is not really helping me any more.  I just end up knowing more then the dr and getting frustrated when they give me their misinformed advice.  But I do appreciate your encouraging words and support.  

I couldn't agree with you more that I know my body best and I know when something is  wrong but that appears to have little influence in the medical community.  Maybe I should stop "looking so good".  Anna  

[tonyad]

  I forgot to add....Of Course we look good..We have  MS!!!!

     Those words coming from someones mouth make me cringe! As well as You sound good!  What the He** is that supposed to mean???  Oh Yes, the Invisible Disease having it's way with us in the inside.....But "Hey!, We look good!"  

Have a restful weekend my friend,
~Tonya    


  

[tonyad]

  Hold on my Friend!  You can not leave us  ;)

   First off, Take a breather, I certainly know how very frustrating this can be!!!  The thing that these doctors HAVE GOT to understand is that "YOU know your body and what is normal for you and what is not"!!!  

    Secondly refer back to the Health Pages!  There are many who have a "Normal" VEP, SSEP and have MS.  I personally think that you should take the weekend to realax and unwind, then when you are ready, seek a DIFFERENT set of Doctors!!
One's that will listen to you!  How are you "Clinical' tests when the Neuro does them in the office?  Any deficits, balance, reflexes, and so on??

     Please keep your chin up Becuase everything is gonna be alright!  :)
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~Tonya