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.

Still itchy

ok this itching is bizarre! And it’s driving me crazy!

I also still have lumps on my head and down by my neck and parts of my ear.

Considering going back to the ER. It’s just such a weird reason to go.

Weird symptom

Yesterday, I woke up and my head felt like it was being stung by a million fire ants.

Itching like mad. Like it was infested with bugs (it’s not. I checked).

It was absolute torture. And I also had lumps all under the skin on my scalp.

The internet was no help. I didn’t call the doctor because what am I going to say? My head itches?

I tried showering. I use a gentle shampoo bar from Lush which I have been using for months so I figured that would be safe.

I tried changing my sheets. Just in case. I do have pets. My daughter has been sleeping in my bed while hers is broken, though, and she has no itching problem, so it’s most likely not environmental. Still, I have to cover all of the regular bases.

Itching continued all day. All night. My brother-in-law told me to try Benedryl. I hadn’t up until this point because I figured I couldn’t be allergic to anything...there was nothing TO be allergic to. He said it still could help the itching because of something something histamines.

I took Benedryl. Some relief. Some more Benedryl. Went to bed. This morning, the lumps are smaller and there is still itching but maybe not as violent. However, parts of my ears are getting itchy and swollen again. What the actual hell?

As far as the dizziness goes, that waxes and wanes. At times, I can almost walk a straight line. At other times, every step is a chore.

Hey, maybe when this is all resolved, I’ll get a disease named after me? This is really some crazy stuff.

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.

Vertigo is a liar

Being dizzy warrants a great deal of laying-down time.

Pretty much all day, every day.

With something supporting your neck and head.

And then, for the most part, you feel “normal.”

Even guilty. Like hey, I’m not really sick. I’m feeling just fine now.

So you get up. And you remember.

Sometimes, vertigo lies long enough for you to actually do a life task. Like do the dishes or cook a meal. Or, God forbid, take a shower.

But it always reminds you. It’s still around. And it will rock your world and pull you to the floor and make you wish you never got out of bed.

You’d think this being my fourth? fifth? time at the rodeo that I would be wise to vertigo’s tricks, but I actually think it’s worse because I’m just impatient for it to get better. Those other times I was hopeless and was sure it would last forever and now I just want to get on with my life. I miss my job and my friends and driving and not friggin being dizzy!

Vertigo, you have made your point. You’re chronic. I get it. Go away now. I’m getting bored being home.

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.