Waiting…. 

So I am awake at 3 am… this is a result of the prednisone dose pak I have been given so I can at least make it out of bed. For the past 4 months, they have been trying to figure out what is going on with me. Well most of my life something has always been going on with my health. I’m hoping this time we will know. 

I had a Lumbar Puncture 2 weeks ago to rule out MS and so far it looks as if everything is pointed towards antibodies.. JO1, ANA and my Hashimoto’s… protein is high in my CSF but I haven’t gotten back the Obands and myelin test. I had gotten to the point last week where I was begging for some kind of relief. I was told I could have a trial of prednisone until I get in with the Rheumatologist. The day I took it, it wasn’t an hour before I felt so much better. I have taken it before for my asthma but not for the symptoms I have been having. It has been so hard because I have missed work. I started a new job in July. My health comes first but I have to have a paycheck. So I am getting nervous because my appointment isn’t for another week and a half and I have one day of prednisone left. Hopefully it will take a few days for my symptoms to return. 

I do not have anyone who understands around me. My husband is supportive to a point, but has no idea what it feels like to not be able to get out of bed. And I don’t expect him to. I am reading other blogs which has helped a lot. Especially with understanding the JO1 antibody and what that entails. I want to thank all the bloggers out there who share their experiences with the struggles of finding a diagnosis and what it is to go through the daily pain and frustrations. It lets you know you are not alone….. 

Can we fast forward please… 

I am having my second MRI of my spine today just to try to rule out MS. I feel like I have been hit by a truck. I have deep muscle pain coming and going throughout my legs and now on my sides and hips! I worked this morning and the more I was on my feet the worse it got. I am tired of it… My doctor is getting me in with a rheumatologist but it seems like it is taking forever. I believe the JO1 antibody has a lot to do with what is going on. 

I need to work but right now it is so difficult. Is this how it is going to be? Am I going to feel like this from now on???

Ok I’ll stop whining.. Just hat do get it out. Now off to my MRI.