CIDP - my life the last few months

My hope for this fall/winter is I continue to see Improvements with my health.

 It's really hard for me to explain what I'm going through as it's so surreal. For months I'd have melt downs after treatment where id just cry and ask my mom "why is this happening to me?!" Followed by "life is so unfair". Everyone that knows the full story knows that this happened slowly over time while doctors misdiagnosed me, but it honestly feels like I woke up one day and my body stopped working. I can't even begin to tell you the horror of having your leg just stop working and having no idea why. I would have rather dealt with two broken legs then what I'm dealing with now. I can't tell you how many hours were spent in that MRI machine! Definitely helped me work on my claustrophobia that's for sure. Every scan came back normal, I mean there was little stuff here and there but nothing major. I had been paranoid from the get go that I had MS. I remember saying to Andrew "what if I'm really sick?" And he assured me I wasn't. 

The doctor wanted me to do steroid spinal injections to help my pinched nerve. I decided I didn't want to do that because I heard it was dangerous. I started acupuncture which just seemed to make things worse. I kept walking laps around work every half hour, wore a heating pad, adjusted my work station and tried everything possible to help my back. 

Even on vacation I had to wake up every hour and heat my heating pad up. I was really miserable but trying not to be a Debbie downer. At this point my hands were so numb I couldn't even open my own beer. Getting in and out of the pool was proving to be difficult and the ocean I needed assistance getting out. I knew in the back of my mind something was wrong but the doctor kept telling me otherwise. The last day I woke up and was having Issues with my leg being numb. I was having a hard time at the airport getting on the escalator. I remember telling my mom to wait up for me because I couldn't move any faster while carrying my bags and trying not to trip on my leg.

When I got home I emailed my doctor and requested an MRI of my neck since the ulnar nerve starts there and asked for a referral to neurology. My doctor said we would do the MRI and depending on what that showed then we would go from there. In the parking lot on the way out from the MRI my left leg started to give out and Andrew caught me. I cried the whole way home because I had no idea what was going on with me. 

I went and saw the neurologist and answered a ton of questions and she put in for another MRI and an EMG. This appointment was on a Friday afternoon and the MRI was scheduled for Sunday. 

Meanwhile Saturday I was set to have PT for my back. The girl didn't really want to do the machine since we didn't really know what was wrong but she recommended I get a cane to help with the now limp that I had going on. 

Sunday came and I did the MRI and Almost fell again walking to the car.

I had a hard time sleeping I was suffering with terrible insomnia and was in so much pain I couldn't get comfortable. I woke up Monday morning June 3, for work and started my morning routine.

I literally fell off the toilet when my leg gave out. After a total melt down and humiliation of my boyfriend having to help me up off the bathroom floor I asked Andy to text his dad and see if he thought we should go to the ER.

While waiting to hear back my mom called and said I should go. 

Start of the longest day of my life.

My heart rate was high so they had to do an EKG. They then drew blood I can't even tell you how much blood they took. It was ridiculous like they were secretly feeding a damn vampire in the other room. I talked to doctor after doctor repeating the story over and over about what happened. Sent for a brain MRI and I thought "this is it, they'll tell me I have MS" the doctor came back in and said the MRI was clear. And this point i'm relieved but now more confused because I had really thought that was it!

Neurology came in and I answered all the same questions did all the same tests. She came back with senior neurologist and again did everything over again. He tells me he wants to put in for a spinal tap. I am freaking the fuck out because I've never had one and let's face it a needle in the spine doesn't sound pleasant and they won't let anyone stay in the room with you. She keeps having to start over because I can't control my leg and it keeps kicking out when I'm trying to stay as still as possible. I keep thinking that it's going to kick out as she puts the needle in and I'll end up paralyzed. More blood work and then they admit me to the hospital.

First a chest xray for I'm not sure what reason and then I get to my room where They inform me I will be woken up at 6am for more blood work. The nurse comes in and draws blood from my hand since apparently the IV can no longer be used once I've been admitted. She was terrible at it and it was painful and took forever. And she brings me dinner at 11pm which was the most blah food I've ever eaten. This was my first time staying overnight at the hospital and I was scared and uncomfortable but at least I had my own room. 

The next day I had PT and OT which they always want to do so early even tho you are hyped up or down on pain pills and barely slept the night before because you have to call for a nurse for assistance to the bathroom any time you have to pee. 

More blood work, more doctors and another day passes.

Finally the neurologist comes in to speak with me. He said that my protein levels in my spinal fluid are 3 times the amount that they should be. He says this is a red flag that I have something called CIDP. (Chronic inflammatory demyeling poly neuropathy) he said in order to confirm I needed to have an EMG test done where they shock your nerves with electricity to see how they respond. The soonest they can do the test is the following afternoon so the make me stay another night in the hospital. 

The next day I go down for the nerve test. I am beyond nervous and wish that Andrew was able to come with me. I lay on the table and am shocked over and over again. This goes on for almost an hour. The ones behind the knee are terrible and I can feel the tears starting to form in my eyes. Then comes the muscle testing where they insert a needle right into my muscle and listen to the electricity that runs through them. This is very painful. I return to my room and just cry. 

Dr comes back in and says the yet shows that my sensory nerves were effected but my motor nerves hadn't been yet. He still thinks it's CIDP but an even more rare form. He talks about the treatments that would be used to treat CIDP and explains that it can take weeks to months for them to work. We discuss my birthday trip to Michigan and he tells me he thinks I should cancel. 

Once receiving a diagnosis in the hospital of CIDP (you can google it I know I had to) I wasn't sure what to think. The doctor kept saying how rare it was but the symptoms fit. He said the only other thing it could be was if I has a tumor. They set up an appt for a CT scan to check. 

At this point I am still able to walk and even do the stairs at my home with help from Andy. 

Andrew takes me to appointment for CT scan. I had drank all the contrast dye they had given me and I thought that was it but sadly an IV was needed. They has a hard time getting the IV started but finally I am set. I go into the room and the girl tells me that once the IV contrast goes in I'm going to feel warm and may feel like I pissed myself but she assures me I will not. I think this is bullshit since I just had contrast with an MRI and didn't feel that way. Sure enough they put the contrast in and I'm convinced I pissed myself. I'm also convinced this machine is made to force people to pass out. There's a lot of holding your breath during this process. They remove my IV and I use the restroom where I confirm I did not piss myself (lol it's funny now) and have a complete melt down as Andy is helping me with my clothes. I just keep saying he shouldn't have to be dealing with this and he tells me neither should I. 

After the CT scan and more blood work  I have an appointment with my neurologist as she was on vacation when the worst of this went down. 

Now it is Friday June 7.

She confirms CT scan came back normal with no tumors. She said when she saw me she had thought I had CIDP but thought we had some time to complete all the tests first before starting the treatment. We went over the options and she said I should start the IVIG. The soonest appointment to start was not until Sunday so we discuss starting Sunday and going for 5 consecutive days in a row. At this time I'm feeling very scared and nervous and not really sure how I feel about any of this since it really feels like it happened over night. 

On my way home I get a call from the dr. She said "you know if this was me I would want to start treatment right away and I think you should go to the ER and start it" 

So after dinner Andy takes me back to the ER where my heart rate is still high and they do another EKG and I get an IV. 

At this point my mom is on a plane out and is due to arrive near the end of this first treatment. Again answering a million questions from doctors and nurses. Some nurses not so nice but trying to keep composure. They refuse to let me keep the IV so it's either be admitted to the hospital or get a new IV every day. I choose the latter.

After finishing my first round of IVIG it's almost time for my mom to leave. I feel like I am getting around a bit better but not as good as id like. I ask my dad if he could come out as I don't feel comfortable being home alone. A few days go by I feel like I'm feeling a little better, but my right leg starts feeling weird now. Mind you the left was the one that had gone out to Start with. 

Now at this point I can't even get up out of bed myself. Any time I have go pee I have to wake someone up to help lift me up and walk behind me so I don't fall and help lower me Onto the toilet. Talk about humiliating having to have your dad or boyfriend help you with your pants in the bathroom. This goes on for the entire month of June. 

Another appointment with my doctor. She says that she had thought things would get worse before they got better. At this point she decides to put me on steroids to help get my body to turn back around to where it was. She also requests another emg and puts in for me to get a second opinion.

Second EMG shows almost identical results as the first.  

My mom flys back out to take me to second round of IVIG. This time it at the infusion center which makes things a bit easier on me and not having to deal with a hundred questions. Within a few weeks I am able to start getting myself out of bed. This in itself is a miracle to me.  

Then I am able to get in and out of the shower myself and back into bed. 

Second opinion is in San Francisco and the car ride itself is painful. 

He confirms everything my doctor had said. He thinks I should be put on an immune system suppressant like they give people who are on chemo. This in itself sounds scary but if it's effective then I have to do it. He tells me that there's a chance that I may not ever be the same as I was before. I think at this point this all really starts to set in. Between being in pain on the way home and the news I have a complete melt down. 

The next few months are much of the same. Treatments, steroids, and new drug imuran. Depressing days when I don't want to get out of bed mixed in with a few good days to give me hope. So many frustrations mixed with emotions and small progress. 

I have to say these last 4 weeks I have noticed the most difference in myself. I finally am starting to think I may possibly be able to get back to normal at some point. 

I've also learned through all of this that everyone has an opinion about what is happening. They think they know how you got it, how to fix it and what I need to be doing in my spare time. It's amazing how many people are doctors and I didn't even know it. 

Just one day id like get through a day without some jackass telling me a big long lecture about something they know nothing about. 

I'm guna keep on pushing myself and I will get through all this. It's been extremely difficult so far and I'm sure there are more challenges to come but I have an amazing support system. I know it has taken great patience and true love to help me through all this. You all seriously will never know just how thankful I am for all your support and love. I'm hoping things will get easier from here on out <3