Ok so I’m going to attempt to remember dates as best I can, but my brain is broken so IMMA TRY.
Ok. In June of 2018 I had my first MAJOR symptom. I woke up one Saturday morning and was almost completely deaf in my left ear. I had fairly severe topical numbness and what I now call the “fluorescent light hum” in my right leg. It feels exactly like a florescent bulb sounds.
You don’t know it till you feel it.
I went to the local ER and they would only speak to me about my deafness. The rest I needed to tell a general physician that I couldn’t afford to go see without insurance.
After a quick exam they decided that, despite not being able to see any fluid on my ear drum, that that was still fluid somewhere in there. I was told to get some behind the counter Sudafed and a nasal spray.
Seems like a bullshit diagnosis but, I’m not a doctor.
A week went by with very little change, so I went to a different ER. They said it was probably the fluid, also ignored my leg and now hand numbness, and switched me to prescription antihistamines and steroids.
Another week goes by, and the steroids make me horribly anxious and moody. And when I say that I mean, full comedy sketch pregnant woman, MOODY.
That Saturday I woke up with a twitch in the left side of my face. By the next morning it had gone from a normal, “eat a banana” twitch across my cheek bone, to every muscle in the left side of my face twitching independently, completely out of unison.
It was maddening.
I went back to the ER, and they once again ignored ALL symptoms except my now only slight(but we believe I also had gotten used to it at this point) deafness, and the hemifacial spasm.
They decided the facial spasm was caused by the build up of fluids they still couldn’t see in my sinuses. Because I complained of side effects on the steroids they didnt have me go back to those, but instead asked me to get Benadryl and Flonase.
After a month of follow up calls with nurses and them cheering me on to buy everything target has ever stocked in the cold and allergy isle, I decided I needed to go somewhere else.
I went to a completely different hospital, owned by a different parent company. FINALLY.
They ordered an MRI and sent a referral to their MS clinic and Neurologist clinic.
Here is where shit gets just… Excellent. Up until this point I have been self pay. I have gone into debt, borrowed money and started hilariously low payment plans to cover the ER to this point.
To be seen at the new doctor I MUST BE INSURED.
I don’t have lots of money so that’s not like a thing I can easily solve. At the time I was making just enough to not qualify for Medicaid but not enough to get assistance in the market place.
I fell in a crack.
So I got a HUGE loan from my dad and bought 6 months of private insurance, not during open enrollment so I was basically paying triple.
Go get the MRI. Which is a weird experience. It is where dubstep was born. For whatever reason mine was a mobile MRI, aka in an RV, so it was like 115degrees and smelled like (fake name) Pam, the tech that had to sit in that sauna for 9 hours a day.
It wasn’t bad. They also shove metal free “noise cancelling” headphones in the face cage with you, so you can enjoy the MRI dubstep remix of the America’s top 40 station.
So after the super fun body tube scan, I get the call for my follow up, but there’s a problem. THERE’S ALWAYS A PROBLEM.
My insurance is refusing to pay anything because they have decided my condition which is undiagnosed and unknown is preexisting. But luckily the doctor will still see me, I have insurance so they’re covered but I’ll basically be self pay.
…on top on the loan… For the insurance… That I just got…
I go in for my follow up and get a weirdly positive vibe. The doctor had a fanny pack of visuals and shit to explain Multiple Sclerosis to me in a way I hadn’t yet been able to understand.
Then they confirmed the presence of two lesions on my cerebellum. I was told it was an average amount for my age, and that combined with my symptoms was enough for him to definitively diagnosis me with MS.
Weirdly, still feeling good. Like a little overwhelmed but was in a weird, “fuck yes, I can take it” place mentally.
The doctor wanted to order another MRI but this time if my cspine, just to make sure there were no lesions there.
Yeaaaaaaaa, another two hours in dubstep tube, but they had a better smelling tech so. It was much nicer.
At this point my facial spasm had finally stopped. It’s now August and the last few months just felt like they hadn’t happened at all. My legs were significantly more numb and I was having more spasms all over.
I went back to the doctor for the final results of all the combined MRIs and blood work. Here’s where I started to get concerned I was at the wrong doctor.
I was told “because there are no spinal lesions, we believe it is something called preMS, and can’t give you MS medications yet”.
I know understand he was dumbing down isolated incident syndrome or whatever the proper term is, but he sounded like an asshole at the time. He did want to start me on capaxone, so he brought in the book of paperwork and told us the options on paying.
HOLY FUCK BALLS.
So they do have payment assistance. The drug companies themselves will help you cover the cost and it’s all cool but, WHY IS IT 500$ AN INJECTION?
And they wanted me to start on a low dose of 3 injections a week. $1500 a week for a self pay, need it now patient. That’s more than the average person salary.
So I decided I didn’t NEED it and waited to do all the hoop jumping to get assistance.
This is now just before Thanksgiving and I’m a weirdly nice person so, I wait until the second week of January to reach back out after not hearing from the office. My doctor’s office had no idea what drug I was talking about.
After annoying a few nurses and receptionist, we figured it all out. They had lost all my paperwork for the drug assistance and accepting the risk of the medication.
My insurance is getting close to running out, and I couldn’t afford another loan for another six months of useless insurance. I decided to just wait until I had worked out my issues with the medicaid office. I haven’t mentioned the ongoings with them to keep stories easily understood, but during this whole process with doctors, this was going on with my Medicaid office.
First, I was denied because I was making too much money. I was a nanny for a low income family for 30$ a day. I barely made it by but it worked.
Then I was denied because my ex husband an I have a very civil healthy relationship and don’t need a government agency involved in our child support agreement. Apparently to get Medicaid I had to. So I went after my ex for legal child support.
No going into that hot mess of a situation, I kind of think you can picture it on your own.
FINALLY, February 20th 2019 I got accepted.
Ran to the phone, made an appointment with a NEW new doctor, and all felt right again. I went in for the first appointment and loved them. They were very attentive to my needs and checking my walking, as the other doctor just talked and didn’t do much examination.
We went over my symptoms, which I’ll post a photo of my list below:
After going over this, they ordered a full MRI, more blood work and a lumbar puncture. I felt more confident I was in good hands, but also the reality of everything really sank in.
This was the first time I’d gone to an appointment alone, so it might have been the first time I was completely honest to my doctor’s about my symptoms. I left with a heavy feeling but still generally in good spirits.
So, the last MRI was tiny compared to this one. I’ve since gotten bored and done entirely too much research and found our my old doctor used a dinosaur compared to the new machine.
This machine was full body length and very very tight fitting. I opted for ear plugs this time, over the top 40s and it was significantly more pleasant. I even almost fell asleep a few times.
This time I was also in a radiology center, so it smelled like hospital and was air conditioned. Thank goddess.
The lumbar happened a few weeks later and was in a hospital. It was a very odd procedure.
I am the see it before it happens, kind of gal, so I googled what to expect. When I got there, this doctor’s office was on a new level. They did x-ray guided lumbar punctures.
I wasn’t laying on my side like I’d thought, I was laying on my stomach. It honestly wasn’t horribly painful. The worst part is the numbing before hand and when they removed the needle, it felt like they hit nerves for my wrists.
That was an odd electric sensation but it wasn’t terrible.
The next few day my back was pretty sore, but not sore enough I didn’t feel capable of trying to clean and do stuff.
DONT BE ME. LAY DOWN LIKE THEY SAY.
That was two weeks ago and I am still recovering. Not relaxing after the lumbar ended me with a horrible pressure headache that only goes away if I lay down, and even then it doesn’t GO AWAY. So do yourself a favor and avoid weeks of bedrest, take the two or three days they suggest.
I’m writing this because I go back this Friday to find out the full detailed results of my MRI and labs. I didn’t want it to be HUGELY long but I suppose this is part one of my diagnosis adventure.
On my first post I shared a screenshot of the email from my doctor so hopefully there won’t be many surprises on Friday.
It’s almost been a year since all this started and I feel like a completely different person.
I would not wish this illness upon anyone, but if you are a warrior like me, keep your chin up. This shit is tough and life makes it harder but we have to keep pushing through.
Until next time.