Hello! Introduction for Sarah_Ann

Hello! I was diagnosed with MS in May.

Being diagnosed with MS was not a surprise for me...

My sister and I are (29 years old) identical mirror twins ... meaning the egg split a little late, after it started coding left from right. Medically we have always been similar. I was diagnosed with Grave's Disease (autoimmune thyroid disease) in high school and then 3 years later my twin ended up showing symptoms. So when she was diagnosed with MS, it was just a matter of time ... it was more of a surprise that it was 6 years after her diagnosis. But being I didn't have outward symptoms, I hadn't been tested and now I have quite a few more lesions in my brain and spine than she does. My specialist is pretty upset that my sisters previous neurologist told me not to get tests done until I had symptoms. My sister hasn't had a relapse since she was diagnosed, so hopefully I follow the same pattern. But we will see.

My sister has tried most of the drugs out there without success. I just started Tysabri being she hadn't tried it ... and of course on my second dose a few days ago, I had an allergic reaction so now I am going through antibody testing and will probably have to switch to another medication... we will see what happens.... Luckily my twin has went through all this already so I have someone to talk to about this. The main issues we are dealing with is trying to figure out what medications to try next. This could mean she will need to retry a medication she tried a few years ago.

Luckily we live in the same city for the first time again after living across the county from each other for a few years. Definitely makes it easier. I am glad the weather is finally cooling down so that I can start trying to keep myself busy again and hopefully go hiking. We grew up in Michigan but now live in Phoenix, so I am definitely trying to get used to spending the summers indoor and the winters outside. Being diagnosed in May and not on treatment until a month ago meant I was inside most of the summer.

Unfortunately, I was fired from my job only a few weeks after being diagnosed with MS... apparently I was too nice to the security guards by actually treating them like human beings and I was made an example of and fired.... but being the company was self-insured I wonder if that was just an excuse to not pay my medical bills. These last 4 months has definitely been a journey. They cut off my insurance the day they fired me, a few hours before I was supposed to have my first dosage of Tysabri. Then I had to do the long twisted process of getting on Medicaid and eventually the free drug program after Medicaid denied me for Tysabri. Now that Tysabri doesn't seem to be working out I need to figure out the next steps.... All of this is so much fun to deal with while trying to find a new job. Apparently it is hard to get a job in your field when you have limited experience and have just been fired...even if the reasons have nothing to do with your work ethic. Partly my fault for getting over educated in the architecture and city planning field.

Overall I am just taking things one step at a time. Definitely looking forward to having the next few months overwith and hopefully have some questions answered.

3 Replies

  • Hi, do you not have any rights, no one should be fired for a medical condition, surely that's illegal ? I hope and pray that you find another job soon, and your ms doesn't get in the way of it. It's nice that you and your sister are able to talk and share experiences with medications and your new life with ms, although I bet you both would rather have something else to share. Keep battling on, and let us know how you get on. Cheers Jimeka

  • Hi Jimeka!

    I filed a claim with the the Equal Employment Opportunity Commission. They said it will be really hard to prove that they fired me for MS. Other than that, being Arizona is an At Will State, they can fire me for any reason. We will see. At least I get to smile every time I see that they keep posting my old position on Indeed. My friend, who is a recruiter for the company, says that they can't find anyone to replace me. Last I heard is that they were going to approach my old supervisor and see if they could talk her into bringing me back, but she isn't the one who fired me. Someone else higher up did and he isn't one to admit that he did anything wrong so I know it won't happen.

    The fun part of all of this is that the company was going on a health kick and was encouraging people to work out, lose weight and get healthy. Well for the 4 months leading up to my relapse I was eating healthy and working out almost an hour a day for at least 5 days a week. I wonder if getting myself healthy for work backfired and got me to wear I am today. But it is something I will never know for sure. Of course with the extreme heat and not being under treatment while the insurance was figured out, all the progress I had made went away and I have to start off at the beginning.

    Having MS is interesting.... sometimes it is hard knowing that I have as many lesions as i do (not that I know an exact number). I wonder how much all of this has been affecting me for years without knowing it. Dropping things, having a hard time getting through both of my graduate programs, periods of feeling overwhelmed with anxiety. It is hard to know what was really me and what was really because of MS. Hopefully I will be able to get it all sorted out soon.

    I am definitely not going to give up. I have always been someone to plan 3 steps ahead. It is definitely a challenge to do that now even though I keep trying.

  • Keep trying. Never give up. God bless Jimeka

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