No answers, continued

I saw the neurologist yesterday. The MRI of my cervical spine was also negative. That pretty much rules out MS now.

The doctor still sees weakness in my legs and I am not walking correctly. I still don’t have consistent balance. When I stand for too long, I feel like I’m going to pass out. That’s where we are now.

Next step is an MRI of my lower back and EMG with nerve conduction studies to my legs. I still have to get the bloodwork done, too. I didn’t make vestibular therapy for this week because, frankly, I couldn’t afford all the co-pays. I’ll go back next week as it really does help.

If we can’t find anything, the neurologist is going on the theory that this is a mega virus that has really suppressed my vestibular system and it just has to work itself out.

Trying to stay positive!

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.

What’s been happening

It’s been a couple weeks.

My dizziness has generally gotten better. I will have problems if I move my head too quickly, but, overall, the dizziness is much better. I think vestibular therapy and time have helped.

I still have shakiness and weakness in my legs. No idea why. I’m also really easily fatigued.

I also went to the ER last week with an attack of colitis. My gastroenterologist said not to worry about it because he had just given me a colonoscopy that showed no disease. However, this has made the fourth time in three years or so that this has happened to me. I don’t know if it’s related to anything, but, since it’s happening now, I thought I’d record it.

I just saw a neurologist yesterday who actually took a long and detailed history of my symptoms and gave me a thorough exam. She is ordering some MRI’s. She did not think this was related to stress (neither did my psychiatrist, btw).

Oh, and the itching finally went away.

I made an appointment with a rheumatologist just in case no one else can figure this out. I do not plan on being sick forever. Or, if I am, I at least want to know what I have.

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.

Thank you, next

Neurologist today.

Did not go well. We went over my symptoms and he feels they are not neurological.

He went on to suggest they are from stress.

Sigh.

I’ve been down this road before. Neurologists telling that my condition does not present as “typical.”

That doesn’t make it psychological.

He said people also don’t suffer from chronic vertigo. Which is false. Being a member of several vestibular/balance/dizziness communities, I can confirm that thousands of people suffer from chronic vertigo.

So, he already had my distrust.

But, EVEN IF the walking issues were somehow due to some kind of psychological compensation, which does happen after someone gets vertigo (which I also told him and he DENIED!!!! This is, indeed, a fact, proven to me when I have had severe vertigo in the past and explained to me by doctors and vestibular therapists)  I did not psychogenically develop cellulitis and swollen lymph nodes.

He referred me to a movement specialist. A partner of his. I don’t know how I feel about going. I don’t think this is a movement disorder. And, if it isn’t a neurological one, then I’m back to it’s because of these infections I keep getting.

K

Doctor Today

I went to my primary doctor to follow up from the ER visit on the weekend. He noted the weakness when I walk more than a few steps and when I try to lift my legs.

The swelling and itching has mostly subsided in my scalp and neck. I still have a few small swollen nodes.

But.

It then migrated to my ears again. Now only one ear, but it has made my two very old piercing holes inflamed, hot, and itchy.  Oh and two fingers on my right hand are ruthlessly itchy and feel like needles are scraping underneath the skin.

The doctor is puzzled at this point. He is sending me for blood work to look for things like autoimmune indicators and thyroid and adrenal insufficiency. I don’t know...I just know my body is like hey I’m going haywire and you really need to figure out why.

Tomorrow, I go to the neurologist. Let’s see if he has any wisdom.

So at the ER

I went to the ER. It did not go as I had hoped.

The doctor acknowledged the swelling in my neck and my swollen lymph nodes and decided I have an infection.

According to him, it’s a “coincidental” illness. It has nothing to do with everything that has been happening with me.

I tried to explain that ALL OF THIS STARTED WHEN MY EARS WERE INFLAMED AND ITCHY a couple of weeks ago, and the assistant who was in the room with him said, “oh now it was your ears, too?” Which the doctor was actually able to also acknowledge swelling and redness on.

I was so frustrated. But they said to me clearly, “don’t expect to get answers here tonight.”

At a hospital. Silly me.

So they sent me home with antibiotics and told me to take Benedryl (which I have already been doing with little relief).

I am not up for this level of uncertainty again.