The Wizard Report

As I mentioned in my really long post, Off to see another wizard, it was a little bit of a stressful experience. In hindsight though, everything that happened that day until I met her, can be chalked up to the fact that it was new, and I wasn’t prepared. I feel that if I see her again, it will go much smoother.

As a person, and as a doctor, I liked her a lot!. She spent over an hour with me talking to and listening to me. Yes listening! For that reason right there I should claim her as my doctor. I will explain the reasons I am hesitant in a moment, but first I would like to tell you more about the positives.

Did I mention she listened?!?!?!? I never felt rushed, or like I was an idiot as some doctors with a god complex make you feel. When I was done giving her my history, she went through each of my 4 MRI’s with me, pointing out which lesion was most likely responsible for each symptom. Would you believe no one has ever done this with me before? I have been told that I uncharacteristically have more lesions in my spine than I do my brain, but that was it.

Random Fact : Most people with Multiple sclerosis might have ONE lesion in their spine for every 3-4 in their brain. I have 3-4 in my spine to every one in my brain.

The doctor compared each MRI with the previous one that I had, pointing out that while I had no NEW lesions, but several of the older ones had gotten larger. I wasn’t surprised by this information I also wasn’t surprised by the new diagnosis or “promotion” to Secondary Progressive Multiple Sclerosis, instead of Relapsing Remitting MS.

What Is Secondary Progressive Multiple Sclerosis?

Here is the link from the National Multiple Sclerosis Society: https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Secondary-progressive-MS

IMO, it means I’ve had MS a long time. The damage that has been is done, it’s not going to get any better. I may or may not experience progression, but if they change my diagnosis in my chart to SPMS instead of RRMS, there are less treatment options available. Even though I have a limited number of options available as it is, why shoot myself in the foot? So mental note made, but let’s keep it out of the chart ok?

Another random fact: When I was diagnosed with MS, there were only 3 disease modifying drugs available, and they were all relatively new. Today there are over 20 that have been approved for the treatment of MS.

The next thing we discussed was how I wanted to proceed going forward. Did I want to stay on the same treatment? I wrote about having to change drugs in the post below, but I don’t think I mentioned the fact that I did change to Ocrevus in September of 2022.

Decisions, decisions, decisions

I told her that I made myself (and everyone else) a promise that I would give Ocrevus a try for a year, as long my symptoms didn’t suddenly worsen. I explained that my current bonehead doc would write the prescription and send it to my Primary care doctor to sign off on so that I could have the treatment locally. I would like to continue doing that if she also didn’t have privileges at the cancer center where I receive the treatment. She responded that it shouldn’t be a problem. We also briefly discussed whether or not to have my port removed, but that’s another story.

The final thing we discussed was another new diagnosis. CRPS Chronic Regional Pain Syndrome. I will write more about that in another post in the future because I still have many more questions than answers.

Overall I can’t say enough positive about this doctor. She was intelligent, compassionate, patient…..etc.

Why I’m hesitant

In my experience it is very difficult to find BOTH a doctor and their nurse, staff or medical assistant that you like. Most of the time when you call, you have to deal with the staff instead of the doctor. So far, the doctor is a 10, but her medical assistant is very unprofessional and did not appear very knowledgeable about drugs that are used in symptom management for MS when she was reviewing my list. That kind of caught me off guard.

Someone else called from her office after my appointment and said, “I’m following up after your appointment with the doctor. You do know that you will have to come up here for your infusion correct?” Um NO! I will not have someone drive me an hour and a half away to receive a 5 to 8 hour treatment and then come all the way back to pick me up! I explained that I was able to get my last two Infusions locally, and how I believed the previous staff accomplished this. I told her that I had discussed this with the new doctor and asked her to review her notes. Strike two for the staff!

It took me 3 months to get my first appointment. I truly hope that it is not that difficult in the future, but I won’t know until it’s time for my next infusion in September.

Please keep your fingers crossed for me that her staff is more competent than they appear, and that I don’t have to give up my first born for an appointment!

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Off to see Another Wizard

I want to write about today’s adventure while it’s still fresh in my head, but I am also exhausted from the all the anxiety I caused myself today. As I mentioned yesterday, I had an appointment with a new neurologist today. Of the 10 neurologists that I have met in my life I have disliked 8 out of 10 of them. It’s taken me 3 months to get in to see this new one, and I had to drive an hour and a half to get there…. Recipe for anxiety. I will write about all that drama and why I need a new neurologist at another time. So about today…

I woke up like a big girl at 6 am and headed out to have a pot of coffee on the deck and watch the dogs play. I had set out all of my medical records, list of questions, etc last night. The rollator walker was in the car, as was my Stick, so I was prepared. I threw on yesterdays clothes, put my hair in a ponytail, brushed my teeth, and left the house by 7:30.

The traffic heading north into Wisconsin was NOTHING like going Southeast into Chicago to see the last neurologist. I was even able to make a quick detour from the highway to use the restroom and get back on the highway in under 10 minutes. (Unheard of when heading into Chicago) The Google maps app was pretty accurate and I was able to arrive 15 minutes early as I hoped I would.

Since I had no idea where I was going once I got there, I decided to use Valet parking to save time. Or so I thought.

I followed the signs for Valet, and was blocked by a bar with a machine next to it. (like for a parking garage) I’m familiar with the concept, but haven’t used one in a long time. There was sign on the machine that said push button for help. OK, I NEED HELP, but I don’t see a button. I waved my arms in front of it thinking maybe it was motion activated then pushed all over the machine until finally a ticket/card popped out and the gate lifted. BUT I thought the signs said Valet?!?!?!

I’ve only used Valet parking a handful of times in my life, but I recall pulling into a section marked valet, and someone with a yellow or orange vest coming up to me taking my keys and giving me a ticket to claim my vehicle. This was not at all like that. SMH As I pulled away from the gate, I continued to follow signs for valet.

Finally I found the guy with the yellow vest. I put my car into park, rolled down my window, and asked if he wanted me to turn the car off or leave it on. Should I just hand him the keys or leave them in the car? He responded, “I don’t need your keys, we don’t get in your car anymore.” HUH?

I repeated Huh?

He said, “Pull up behind this guy. When someone in a golf cart pulls up, follow him into the parking garage, and then he will give you a ride back up here.”

IF you say so……

A few minutes later, a man did pull up in a golf cart and instructed the three cars that were waiting in line to follow him. We did. We parked our own cars, and then loaded into a golf cart with my walker strapped to the back. He dropped us back off where we started at the front of the hospital. I guess that’s one way to do it, but new to me and not as quick as I hoped.

I told the driver that I had never been here before and asked if he knew how to find the MS Clinic. “Go through those doors, down a long hall and you will run into someone. Be sure to give him your ticket.” was his response. Okay then? lol smh I’m glad I arrived early.

Once inside the hospital, I peeked my head inside an office and asked again where I might find registration. “Keep going this direction, it’s not too much further.”

At the first desk I came to, I pulled the ticket out of my pocket saying, “I’m supposed to give this to you I think.” He quickly asked if this was my first time here. I’m sure it was very obvious that it was.

He handed my ticket back to me saying that it was all paid. ( I didn’t pay for it, but ok)

He also gave me this map telling me ” follow signs for H, then you will see a carpeted area, pass the psych department ( you don’t want that) and continue following signs to K, but first you have to go to registration behind you.

I worried that I missed half of what he said so I borrowed his pen and drew a line and wrote not psych.

At the registration hub there were several desks with people seated behind them. Each desk had a number over it with a lighted green or red circle around it indicating whether or not you could approach. There was a large sign indicating the same and for redundancy a person standing behind a podium telling you the same thing the sign said. SMH again.

I really shouldn’t be surprised, I think everything in the medical field is more complicated than it should be. The podium girl directed me to number 6, the one desk no one was seated at. After waiting for 5 minutes, I was able to make eye contact with podium girl and mouth, “There is no one here”. She apologized and told me to go to “3”. Did I mention I was really glad I WAS early? Maybe I would still be on time at least?

Number 3, had me sign the black box machine a couple of times assuring me that I wasn’t giving up my first born child, and sent me on to the area marked K. “Thank you, I have a map” As I was approaching H for neuropsychology, I wondered if I shouldn’t stop there also….. one stop shopping? No, no Grace keep going. BTW the map is incredibly deceptive. The halls are long as fuck and don’t mention that there are 20 offices between H and K.

Finally I got to the area marked K……. and ANOTHER check in Desk. literally LOL and SMH

I think I have reached my limit of writing for the day. I did meet the new neurologist. So far, I like her a lot. I have a lot of information and a new diagnosis to process though. It has been a LONG DAY.

Hope you all have a wonderful weekend! Thank you for reading and commenting. I really do look forward to the interaction.

Taking inventory

I’m not sure if everyone does this, or if it’s just me, but during the year before a Milestone Birthday, ( 21, 25, 30, 40, 50 etc) I do an “inventory” of where I am in life versus where I want to be.  If I died tomorrow would I have any regrets?  Do I need to say anything in particular to anyone? Are my affairs in order?  What do I want to accomplish in the next 10 years?  and so on and so on.  I also do this everytime I get another scary diagnosis.  I will be 49 in less than a month which will start the “OMG I’m gonna be 50 reflections”.  This year I get to kill two birds with one stone I guess?  lol

When I was 29, I received the “wonderful news” that I had cervical cancer.  As the doctors were talking about chemo and radiation, I asked, “why not just take it all out?.  ( do a hysterectomy)  You should have seen the shock on their faces.  I heard, “but you’re not married!  What if you want more kids one day?”  For me it was a no Brainer, I was a single parent. I kind of had to be alive to raise the two children I had.  If doing a hysterectomy would allow that to happen, that was the decision.  I had to go see a psychiatrist to make sure I was capable of making such a decision all by myself?!???!…. I did. Still smh about that.  Yay the hysterectomy worked!  No more cancer! 

I think this was the first time I did the whole “inventory” thing.  My biggest fear during all that time was that my kids wouldn’t KNOW me.  The real me.  The one who makes mistakes 2 or 3 times before learning a lesson.  I started making photo album journal diaries for the kids.  I made albums containing my deepest darkest secrets, and ones for each year of each of their lives.

But I digress.  As I look back over the last 48 years of my life, I can honestly say that I’m not disappointed.  I have made ALOT of mistakes, and have learned most lessons the hard way, but there is no doubt that I HAVE LIVED!  Looking into the future, I am not even a little bit worried about girls and their families.  If something were to happen to me, I believe they would both step into the role of taking care of my parents.  They would even check in on Einstein for me. Can I really ask for more?

With all of that being said, I think I am ready to take the next step and make the switch to Ocrevus. The 3 disease modifying drugs that I was considering all require a certain blood tests before beginning treatment. I have had the tests completed. The next step is waiting for approval from the insurance and drug company. I won’t be “sitting” here waiting. I have a life to live, and Monday morning I’m heading out to see the grandkids to do just that!

Decisions, decisions, decisions

I can’t tell you how many times or with how many different people I have had this SAME conversation. This time something changed.

I have been on Tysabri for almost 13 years. That is means close to 140 infusions. I don’t know the exact number, but I’m pretty sure Biogen (the company that makes the drug) could give you an exact number, as well as my JCV number, how many lesions I have on my brain and spinal cord, etc.

Facts we know:

1. The longer you are on Tysabri, the more likely you are to develop a deadly brain virus called PML. Because of this, most doctors only prescribe Tysabri for a few years before recommending a different drug.
2. While on Tysabri you have to have blood tests for the JC Virus every 6 months and an annual MRI to monitor your risks for developing PML.

Two years ago, not only did I test positive for the JC virus, but my numbers were quite high. (1 is bad, I was at 3.43.) My neurologist suggested that I consider changing to a different MS treatment. I refused. Tysabri has been a miracle drug for me. (Many posts about it) I did however agree to more frequent JCV testing and MRI’s. I am supposed to go every 4 months, but I haven’t because….well life.

Over the next 6 months, my JC numbers continued to climb to 4.69, so I made what I feel was another concession. Instead of getting an infusion of Tysabri, every 4 weeks, I would allow them to extend the time between doses to 6 weeks. (Personally, I hate the longer time in between infusions, because the last 3 weeks are “slump weeks” for me, but my numbers have stopped increasing.) They are still high, but haven’t gone up, so that’s a good thing.

This last year I’ve noticed that I am more fatigued. I have trouble finding the right words and expressing my thoughts, and my legs are heavier and painful each night. I have been shrugging it off, and attributing it to the longer intervals between Tysabri infusions, the fact that I am getting older, and the additional stresses in my life. (taking care of my parents, covid, and dealing with people in general) , but my last MRI shows that I have new lesions in locations that correspond to my symptoms.

The entire time I was taking Tysabri (at 4 week intervals), I had no disease progression or increase in lesions. (Apparently a six week dosing schedule does not prevent relapses for me) The medical community considers the risks of pml too high for me to go back to a 4 week schedule, so maybe it’s finally time to change?

I’m scared that I am going to start having frequent relapses. I don’t want to go down that road again.

Before Tysabri, I was in a wheelchair. I know it’s not the end of the world, but still. I was severely depressed and was being hospitalized for MS flares approximately every 3 months. Not the kind of life I wanted to live.

I am also pretty scared of some of the side effects of the other drug options available. 😦

I come to wordpress when I need to “get out of my head”. Thank you for allowing me to do that, and reading along. It helps to not feel so alone.

APAD Day 38 $1.72 to pee

Have you ever heard of a foley catheter? It is an indwelling catheter that is a attached to an external urine collection bag. If you have ever been hospitalized and needed a catheter this is the kind they used. Not fun right? RIGHT! Fortunately, they also make one time use catheters. They are individually packaged. When you need to urinate, you insert the single use catheter while sitting on the toilet. Your bladder is emptied, then you remove it and discard it. YAY!!!!…. or not.

Single use catheters are expensive! $1.72 each to be exact. So if I have to pee 10 times a day that’s $17.20 a day to pee or $516.00 a month. WHAT THE ACTUAL FUCK?!?!?!

The reason this comes up is because I have Medicare and they have decided that I am allowed to pee free of charge 6x a day but no more. If I have to pee more, I’m gonna have to pay for it. $206.40 a month to be exact. Yeah that’s not going to happen. I do have other choices though

1. Reuse the single use catheters ( Mind you the box they come in, the patient information, and just about every website that sells catheters STRONGLY insists that they are not to be reused.) Medicare even has a commercial on tv that a person should be able to use a new catheter each and every time they urinate. (Then why the hell won’t you pay for it?!?!!?)
2. I can use a foley catheter (walk around with a bag of pee strapped to my leg everyday) for a couple weeks a month when I run out.
3. Try to spread awareness of this issue, hoping it will make a change.
4. Try to enlist others to spread awareness as well.

I’ve chosen to do all four of the choices that I feel I have. I am also going to attempt to contact Cure Medical to see if they have any patient assistance programs. https://curemedical.com/contact-us/

If you are able, please share this story or blog, tell someone the story, something. It would mean a great deal to me if you would.

Do you have any other thoughts on how to work around this problem?