Sunday, June 19, 2011

Diagnosed With MS 4 Years Ago, Wish Someone Would Have Told ME!!!!!!!

You have GOT to be kidding me!!!! I'm pretty sure I would remember a conversation about me having MS and starting treatment!
I had requested my medical records from North Carolina Baptist Center /Wake Forest University from Dr. Douglas R. Jeffery, M.D., Ph.D, Associate Professor at the Multiple Sclerosis Clinic. I tell you so much information so you can see what a “Professional” this Neurologist is.
On February 14, 2007 I had an appointment with Dr. Jeffery, I was referred to him by my primary doctor at the time, Dr. William Mark Handy. Who happens to still be the best doctor I have ever been to.  Anyway, I was referred to Dr. Jeffery for the purpose that Dr. Handy suspected that I had MS and Dr. Jeffery was an MS Specialist. My first visit wasn’t that best, he had no bedside manner at all and he did mention that MAYBE there was one spot on my MRI that could possibly be a lesion but it was barely there, so it was hard to tell. He wanted me to have a cervical MRI and come back in six weeks for the results.
So I had the MRI and went back on April 5. Forgetful me didn’t take a copy of the MRI with me and he wasn’t happy. He flat out told me to go home and lose weight and I would be fine. So once again I left his office without any type of answers whatsoever and never heard from his office after that.
As time went on and my pain got worse, Dr. Handy referred me to a Rheumatologist to see if they could help me. On my first visit, Dr. Christopher Morris diagnosed me with Ankylosing Spondylitis (AS). Throughout the past few years I have tried every TNF inhibitor to treat the AS,  without any luck. Which brings us up to date.
I was having this weird eye/head thing going on so I went to my primary doctor, Dr. Kevin Kaufhold. He sent me to have and MRI to rule out tumors or any other bad things that might be floating around in my brain. LOL  Well as we know, the results are in and it is MS. Lovely, just lovely!!!
So now I am starting over with a new Neurologist, Dr. Galea and hopefully he knows what he’s doing. Since I am going to a Neuro I thought I would contact Baptist Hospital and get a copy of my record from Dr. Jeffery. So today I got the mail and my records were in it. Much to my surprise this is what I read…
“At this point, I believe we have confirmed a diagnosis of multiple sclerosis. She has additional imaging evidence compatible with that diagnosis by MRI scan. At this point, we will plan to go ahead and start her on Rebif therapy.  I will see her back in six weeks. I have talked to her about all the side effects of this therapy. She will return to clinic in six weeks and will check her baseline CBC and liver function test. I wish to monitor interferon and interferon-induced hematologic and hepatic toxicity.”
And that takes us back to the beginning of the blog…You have GOT to be kidding me!!! Never did he tell me during that visit that I had MS nor did we ever discuss treatment. I am pretty positive that I would remember having such a conversation! I am beyond pissed that I was in no way informed of such a diagnosis. Don’t we all think that if I was told that I had MS that I would have been treating it. I don’t know if he got a copy of the MRI later and made the diagnosis and someone forgot to call me, but I NEVER received another phone call from his office again.
Bad enough that I was never told about the diagnosis,  but now I have been taking TNF inhibitors that has a side effect of demyelinating disease. So for the last four years I could have been treated for MS, but instead I was taking drugs that can cause it as well. Isn’t that just a HUGE kick in the ass?


  1. This really really pisses me off!!!!! When do you file the lawsuit?

  2. I actually contacted an attorney today, just waiting to hear back. Miss you girl!

  3. Oh my god. I am just so disgusted by this. I have a somewhat similar story but this takes the cake. I think it's good you're contacting an attorney. Best of luck!