Of rodents and multiple sclerosis
A super crazy week in August equals a repeat of an old blog. This happens to be one of my favorites!
“Despite all my rage I am still just a rat in a cage..”
Bullet with Butterfly Wings, Smashing Pumpkins
According to the Chinese zodiac (and no, I didn’t just have Chinese food, that is one take out I can avoid as not being worth the calories, probably because of all the vegetables and bean sprouts,) I am a rooster.
This was surprising to me as I don’t feel like a rooster. Unless I happen to be one of the colorful Portuguese roosters that are symbolic of justice and of, well, Portugal. 
No, lately I have been feeling like a rat. This rat like feeling started at the end of 2013 when I agreed to participate in an MS clinical research trial.
The company that called me said that all I would have to do was go to their office for a brief, non-invasive exam, answer a few online questions and then participate in a follow up survey. I wouldn’t have to take any drugs or be stabbed or anything crazy. And to thank me for my participation, I would receive a check for $115.
Of course, I signed up. I needed to help drug companies discover ways to either cure MS or find ways to make living with multiple sclerosis easier.
I needed to help others.
I needed $115 dollars.
But as the day drew closer, and I was driving to the office, I started to worry. What could they possibly want to study about me?
It had to be a scam or, at least more involved than they said.
Would they put me in a cage like a lab rat and watch me try to get out?
Would I have to run on one of those hamster wheels while they took notes?
Would they put me in a maze and offer me pellets to see if I could find my way out?
If the pellets were chocolate, I bet I could do it. If they were broccoli pellets, forget it!
These worries lead to thoughts about how important rodents actually are in my life.
Growing up, I had a pet guinea pig that I loved. Sometimes. Until I got bored with him.
My parents wouldn’t go for a dog and we weren’t a cat family, so desktop pets were the only option; goldfish, a hamster my sister named Tickles, and the guinea pig. I got to name him.
Being an imaginative and original child, I named him Guinea.
Ahh, poor Guinea. He led a short, boring life in my basement-my mom being terrified he would get loose in the house if he lived in my room. And Tickles, little did I know how huge Tickles’ kind would be later in my life.
My current multiple sclerosis medication is made with Tickles’ Chinese friends ovary cells. Except, I think Tickles was a boy. Do boy hamsters have ovary cells?
It didn’t matter I realized, as this medication is a shot and I am done was done with shots! At my next neurologist appointment, my doc and I would pick a new, non shot drug to help me fight my MS.
Until then, off to be a lab experiment I went. And they weren’t kidding, this was easy money. I mean, an easy way to give back to other MS’ers like myself!
I didn’t have to take anything off for the exam or even get my arm squeezed to a pulp by the blood pressure cuff. And the survey was easy. The only stressful part was all the paperwork I had to do.
They left me in an office alone while I filled it out. And they gave me chocolates from the big candy bowl they had at the reception desk. 
Hmmm, were they watching me while I filled out the paperwork and munched? Was that the experiment?
The next week I completed the follow up survey, (which was about walking issues by the way,) and stopped feeling like a lab rat.
Until I got to my neuro appointment later that day.
“We could try oral med #1. The main side effects reported with that are extreme GI discomfort (ie, diarrhea) and flushing (ie, hot flashes.) Not everyone gets them though so we could try it and see how you do.”
“We could try oral med #2. The main side effect reported with this one is alopecia, (ie, thinning hair.) Not everyone gets that though so we could try it and see how you do.”
“We could try oral med #3. Oh no, wait, you tried that with your last doctor and it turned out they discovered a weird untreatable heart condition that is not dangerous unless you take oral med #3. Previous trials and data show that your heart could stop. We definitely don’t want you to try that.”
Suddenly I felt like a lab rat again. Trial after trial seems to be the way of multiple sclerosis.
It was at that moment that loving memories of Guinea and Tickles came back to me.
My current medication works, has side effects that I am used to and is helping me to be strong in the throes of multiple sclerosis.
Yes, I STILL hate shots. But maybe a drug that is made from rodent cells is better than being tested like a rodent.
Apparently Chinese hamsters are made of good stuff that can help us humans fight disease. I made the decision to stay with my current drug. I felt confident that it was the right decision and would continue to save the day when it came to my MS progression. 
That thought reminded me of another rodent. One who was super strong and super brave and ready to fight the bad guy, even if the bad guy was a disease.
“Here I come to save the day! That means that Mighty Mouse is on the way!” Philip Scheib/Marshall Barer
Does anyone happen to know if Mighty Mouse was Chinese?
Note- No rodents of any kind were harmed in the writing of this blog post.
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Ah so true. I am going through this right now as my drug has gone generic and no one will tell me about anyone on the generic and how different it is from the brand so I am thinking it is Indian crap. My insurer allowed me to get 3 more months of the brand but after that I am on my own. My neuro NP threw me out because I told her I wanted to wait for my MRI until Jan when my FSA kicked in as it was not urgent and we have spent our FSA ++++ on my husband’s skin condition so she doesn’t e mail nor take phone calls so I had to send a snail mail letter asking if she would see me and chat about options and renew my Xanax. NO RESPONSE so I am guessing we are threw. My old neuro, whom I miss and adore but he is now in NC so no longer accessible used to say all the time “we cure a lot of rats!” So this is so totally about what he said and yes wouldn’t it be great if we could be human rats and let them cure us! Good luck with continuation of the Rebif and here’s hoping in your lifetime they come out with an oral which works with little to no side effects or maybe that elusive cure (if they can find what causes this monster!) Hope you enjoyed that $115!
Hi Judy You know what really upsets me about your comment is that the latest neuro won’t respond to you! How ridiculous, frustrating and childish is that. It doesn’t take a lot of courage to have your office assistant send a “we can no longer treat you” letter. Why delay your treatment by just ignoring you and leaving you in limbo! Ticks me off.. This latest study is on different type of auto injectors. I’m just hoping they have chocolate! Take care my friend.
You’re right, Yvonne. That story burns my tailfeathers. A neurologist who doesn’t respect a patient’s wishes and financial condition is down there on a level with the lab rats, except the rats are at least doing something positive to fight the disease. Put that doctor in a maze – and the NP for good measure – and let the rats go after them!
Fortunately, there are good doctors out there. I delayed my MRI for the same reason and got no grief whatsoever from my neuro. Life is too short (and MS too nasty) to put up with inadequate care. Hang in there!
Absolutely! I don’t think it is a lot to ask to have a neuro who works with us! I love my neuro too thank goodness. Hope you are well my friend.
Rick you are my kind of guy! I have been on the other side, as they say, and always respected my patient’s wishes and more often than not comped them (before we were taken over by the hospital and were truly for big profit and then I left – MS or no MS I think I would have left the group) I used to hear from patients that no healthcare if better than inferior health care and now I know exactly what they were talking about.Just for your info there is 1 group of 2 here in beautiful downtown VA Beach that I haven’t tried since moving here a few years ago and one is 67 and the other 64 and they were recommended to me by the radiologist I canceled with but he says he doesn’t know how long they will stay in practice and they are about an hour away (almost in NC) and I will keep Yvonne in the loop as to their care. My poor field has gone to the dogs.
So crazy Judy! Hang in there!!