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….. 

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Here we go again…..

I need to start at the beginning… I am 44. In my early 30s, I started having migraines daily. Also I was vomiting up anything I would eat. I went to several doctors, ending up with a neurologist. MS.. That was what I would be tested for. I had an MRI. 3 brain lesions and a negative lumbar puncture later, I was told it was just migraines. Numb face, weakness, blurred vision, right pupil larger. Migraines. Ok. Sounds good. I was also told with my labs that I was hypothyroid. Great. Take a pill. Also swollen calf. After ultrasound I was told my blood vessels were swollen and to take a week off work and put my leg up. Sure I can do that. 

Through the last 10 years, I have moments where I crash. Fatigue, aching pain, you name it. I am told it is thyroid related and they will adjust my medicine. Or I’m told there is nothing going on. Finally, a year and a half ago, I asked for the antibody test for Hashimotos and of course it was positive. I switched to armour and felt better. For about 6 months. 

This past year has been HELL!! I had a hysterectomy due to heavy heavy bleeding and fibroids. In the hospital I got a bonus!!! Ecoli and strep infections. I was in the hospital 11 days with drains and all the grossness that goes with it. Heavy antibiotics. Then a large knot came up on the back of my head. Was ignored by my doctor.  About 3 months later, MRSA decides to come out of my underarms. After 3 months of antibiotics it has subsided. Then, like a miracle I had almost 3 months of wonderful health! Felt the best I have felt in years. 

That brings us to the past month. I have had a migraine for 3 weeks straight. I haven’t had one like this since that time 10 years ago. I have new stuff too. Legs heavy. Horrible all over pain. Trigger points. Sharp pain in joints. Shaky vision in my right eye with pupil larger again. So I go to my endo. He says thyroid numbers are fine. He does not address hashis. He is one of those endos that acts like the autoimmune part isn’t there. I am referred to neurology.

Here we go again… 

He is an awesome Doctor as well as his PA. They listened. Told me the knot is a muscle spasm under my skull. When he touched my head or anywhere for that matter the pain was crazy. Muscle weakness. Need to be tested again for MS. Also doing an autoimmune panel to rule out everything. Then after that we may do a LP and evoked potential. 

I’m not going to lie. I’m nervous. I want something to make me feel better but.. I’m so tired of feeling horrible. No one would know what is going on with me because I’m a very bubbly, always wanting to have fun kind of person. But the past two weeks it hurts to walk. I am forgetful and repeating things I do. I’m scared. I actually was in a panic and tears yesterday morning because I could not for the life of me remember where I had just put something. 

So my basic labs are all normal. ESR and CRP. Normal. Waiting on Autoimmune panel. Will have MRI on brain and spine in a week. Maybe I will have answers! I know there are many of you who have gone through something similar. Any words of wisdom would be appreciated!! Until next time……