Valerie Jamison-elikens

(Written in 201) 
My journey with mysthenia and Iv ig treatment.....a ride I will never be able to get off


My journey began just a few months ago when I received the dx for mysthenia gravis.  Let me rewind a bit.  I had a cousin, Peaches" who was dx several years ago and woul often tell me "if you ever have to see a neurologist be sure to tell  him I have it and you had another cousin who had it" (both on my mother'side. Me tell the dr about mysthenia, what for I don't have any of your symptoms (lazy eyes and slurred speech).  I had experienced a heaviness in my tongue about 6 years ago And when I told a neurologist about what I was feeling he did minor tests and wrote it off as stress.  I believed him and went on with life ignoring the symptoms which went away.  I look back now and say the disease must have been in remission.  A few months ago they returned and more frequently so I returned to another neurologist.  A series of tests were performed and they couldn't find anything wrong.  I began to think. To myself am I going crazy.  At this point I decided to tell them to test me for the disease.  Results positive for the disease.  The md was surprised and thanked me for making him test me. The md had no first hand knowledge of the disease so he referred me to a specialist in Trenton, nj.  This md although he had my results from previous md was not convinced I had mg because my symptoms were rare so he did his own tests. Test results were again positive.  Although I had started meston I still was having symptoms and now it began to effect my breathing.  Md still not 100% sure my dx was completely positive he sent me to his friend another mg specialist who performed single fiber eng test.  Again results were positive.  Now begins my journey with Iv ig treatment.  This ride is sure making me dizzy lol.


I got the call, I got the call!! Ivig starts Thursday ( June 27).  I don't know whether to be happy cause now I am going to get treatment to help relieve my symptoms or should I be scared of the unknown.  I hear so many neg stories about the side effects of the medication.  I will just have the pray and ask God to see me through.  I arrive home and I am so excited just like a kid in the candy store to open my boxes.  I have the Iv pole, sharps, sharps container, Iv, gloves and saline solution boy am I excited then something hits me.  Girl you are really sick, you have a chronic non curable disease, it ain't going away.  I drop to my knees and begin to cry and pray all at the same time asking God to help make me strong and get me through these treatments for however long they may be.