So far, no answers

I went for the brain MRI and it came back normal. Good news but no answers. I still have one to get on my cervical spine.

I saw the rheumatologist today and he feels this is not autoimmune. If anything, he feels the spine is worth looking into further. Ok. But still no answers. He is recommending the rest of my back be studied with MRI as well.

My blood work showed impaired kidney function. I have to get that retested. I’m also getting worked up for Lyme and the rheumatologist is also testing me for some muscle disease.

Meanwhile, I have found the vestibular/physical therapy has been helping me reset my balance. It’s getting closer to normal.

I am bored and I want to go back to work, but I can’t see myself working in this current physical state in my particular job. I haven’t even tried driving yet.

That’s about all the progress I haven’t made.

Vestibular Therapy Today

Had my bi-weekly torture session otherwise known as vestibular therapy.

I guess “torture” is a strong word. But it is very difficult and makes me super dizzy and leaves me exhausted.

They stepped things up, too, having me do exercises on a balance board. It’s just what it sounds like. A wobbly board you are supposed to balance on.

They also did other head positioning moves which create endless dizziness and nystagmus.

I talked to both therapists who have worked with me about my neurologist visit. They were both surprised and angry. They acknowledged these symptoms were not consistent with something psychosomatic.

For example, I had to use the exercise bike. As I was pedaling, my right foot kind of arched and pointed. I could not get it to stop and pedal normally.

I’m trying to not obsess about all this but it’s hard when you don’t have answers.

It’s all apparently uphill from here

Vestibular therapy again today. My normal therapist was out so I worked with someone else.

She watched my balance issues and my body’s responses to exercises and basically said what my other therapist said: that this is not normal vertigo stuff and hopefully the neurologist could figure out what is happening.

She asked me if I have a family history of MS or Parkinson’s (I do not). She feels I should be thoroughly checked for either of these.

I still have an entire week until I see the neurologist and this is frustrating to say the least.

Oh yeah, my walking is actually getting worse, too.

I’m honestly not even afraid of what it can be. I’m more afraid of no one finding out what it is.

And the world still rocks

I had vestibular therapy today. I’d like to say it was an enjoyable experience but that would be a lie. It was, well, it was torture if I’m going to be honest, and I have made it a point to be honest on this blog.

I had to do all kinds of standing on one leg things. I felt simultaneously like the floor was rushing up at me and that I was rocking on a boat in a storm. Over and over again. As you can imagine, it was not easy and I was relieved when it was finally over.

Until she did that making me lay down really fast while turning my head thing. My eyes fluttered for about two minutes (she told me) when we went to the right and about a minute when we went to the left. After that, I was pretty much done FOR THE REST OF THE DAY!

I’ve been home for hours and my vestibular system is still super irritated. I can barely move my head without waves of horrendous dizziness rushing over me. Walking is horrible. Still, I know I’ve had it much worse and that’s what drives me to know it will get better. I’m just getting a little impatient.

Vestibular Therapy

I went to my first session of vestibular therapy yesterday. Let’s just say it wasn’t what I had hoped.

The therapist moved my head around and watched my eyes move around and kept commenting on how extreme my reaction was and how severe my balance issues were. She also had me do a couple of things like stand on one foot (ha ha) and turn around really fast (and I hit the floor).

All I kept thinking was I’m glad I am going now when it’s not as bad as other times. What would she have said the first time I had it?

In any case, she made me get a walker, which I thought was a good idea. I was able to borrow one from a neighborhood lending closet. I also picked up a shower stool because showering is scary, I won’t lie.

I’m afraid people won’t understand how I’m suddenly so sick. To be honest, I don’t understand it. I’d really love to know what exactly brings on these episodes.

That’s it for now.

What comes around..

It’s back.

After 6? 7 years, my good buddy dizziness has decided to come for a visit.

I guess I can’t complain. I’ve had a good run.

I’ve been driving (except at night, but that’s because I have poor night vision).

I’ve been working. Full time. More than full time because I took additional jobs on top of my full time job.

I wasn’t completely clear-headed in all of that time, but I had learned to function just fine. No sudden head movements. No roller coasters and the like (I tested that once and regretted it for days).

Then, I had some random itching on the outside of my ears. They got hot and swollen. After a few days of that, the dizziness hit and it’s been hanging around ever since. I was in the hospital a few days with it. The neurologist I saw there said the swelling probably went into my inner ear and messed things up. He said such swelling could be on the microscopic level and be enough to throw off my balance. Awesome.

I’ve been off from work a week and it’s boring. I’m set to start vestibular therapy tomorrow.

One big difference between this time and the others: I’m not afraid and I’m not searching for answers. I know what it is and I know it can go away. It has before. It’s also been so much worse. So, I have nothing to be afraid of. It’s just not a super-fun way to spend time off.

Will update after vestibular therapy.