Living the not so good life

Since I was little I've always given doctors a run for their money. I'm not an easy patient, I don't mean that I don't listen or comply with their advice but I have rarely been textbook for any illness. Of course when it comes to MS my symptoms aren't always documented. At the same time, just because I have MS doesn't mean that every time I have an issue that it's always related to MS (I have seen doctors who want to blame anything and everything on MS).

Over the last 4 years I've learned more about MS and how it presents in me. Plus, I have learned what can trigger an MS attack like heat, an infection, and different things like that. But, when there's MS symptoms from heat or infections it's not usually a relapse. 

January 1 when my right leg went completely numb I assumed it was MS related. The following Monday the neurologist fit me in with the PA. I was in the office for 2 hours, the first hour the PA did a thorough neurological exam (includes reflexes, the feeling in the arms and legs, walking, smiling, checking eyes, and so much more) and she agreed I'd probably need to go through a round of high dose steroids. Then the PA then went to talk to the neurologist who also did a very thorough exam. 

I expected to set up time to do the steroids and be on my way, but that's not what happened. My neurologist said she didn't think my leg was related to MS and was probably something to do with my peroneal nerve (which is a main nerve in the lower back). She order an MRI of my lumbar spine on Wednesday. It definitely wasn't what I wanted to hear. I wanted to know that I could do steroids and be "normal" again. 

Unfortunately the MRI results weren't quite conclusive. If the MRI had shown a herniate disk or bulging disk then surgery could be done to remove the disk from the nerve. I don't want to have surgery, especially back surgery but I (think) want answers. I'm not sure if I really want the answers, over the years I've learned to be very careful when searching for answers. Over the past couple of years I have searched for answers and they are never good.

Last Friday I had an appointment with the PA with pain management. When she saw that I was in a wheelchair and not walking (since I couldn't feel my foot and had to use crutches to walk my neurologist was worried I'd hurt my foot worse. So I use the crutches around the house) she asked what was going on. Right after than she saw the patient before me, it seemed like an unusual amount of time waiting. But, when she came in the room she told us she was on the phone with the neurologist to see if the pain doctor could do anything. (Yes, I have a team of doctors who work together! It's great for times like this because the more doctors brainstorming the better.)

The PA at the pain doctor told me they wanted to do steroid injections in my lower back to hopefully bring down swelling and possibly help my foot. Also, they discussed steroids which the PA was going to prescribe, but for MS doctors usually do 3 days of high dose steroids (which are only available through IV or liquid oral). Friday afternoon the infusion center called to set up an appointment for my first dose of steroids. I made an appointment for Monday, but then I got "lucky" because the center called back saying a home health agencies said they'd take me on.

The little ball is there medicine. It's so crazy because it automatically releases into the vein  over 30 minutes. 

Friday night the infusion center sent a bag of everything the nurse would need to start the IV, saline, the actual medicine, and so much other random things that I don't think were even touched. The home health nurse came Saturday morning to start the IV, which I'm a hard stick and always have been and they only sent 3 needles. Luckily she got the IV started with the second stick which wasn't bad. Sunday morning I woke up feeling excited because the steroids helped with the numbness in my calf. I was hopeful Monday my foot would be better but I wasn't that lucky. 

All the "fun" items the infusion center sent me.

The issue with the high dose steroids is after I am on them I get sick. Although, each time my dad was sick when I got the steroids, but I didn't get the same illness. Tuesday I was supposed to go to the pain doctor for a steroid shot, but I got bronchitis so I had to reschedule. Monday I'll be going to get a steroid epidural to help my back. Then, Tuesday I'll have a nerve conduction test which may be able to tell if it's the nerve root or not. 

At the end of January I have an appointment for a foot brace. I have a very busy life considering I'm not working right now. It's very hard though to look at my calendar and instead of all these social events mine is covered in various appointments I have, when I'll need to refill the different medicines I take. It gets tiring, old, and not something you'd ever really want to deal with.