And it continues


So much has happened in the last few weeks. As I told, my neuro of 17 years had to ‘surrender’ all of his MS patients that he had on Tysabri. He had a huge infusion center and from what I understand, he had over 300 patients with MS. And most of them he had on Tysabri. Don’t get me wrong, I loved my neurologist. He diagnosed me. He was even invited to my wedding! But I honestly think things got away from him.

So I began my mad search for a new neuro. As he didn’t really have too many suggestions, I began calling people I knew. Luckily, my husband had built the home of the CEO of Unity Health. He suggested a doctor who I called and set up an appointment. I already had 2 other appointments with 2 other doctors. The doctor who was suggested was able to take me first due to a cancelation, so I saw her, bringing my husband and son in tow.

Wow. All I can say is Wow. She was so thorough. My old doctor had gotten so big that there really wasn’t a lot of time he could spend with patients. So I would go there, wait 5+ hours for an appointment and see him for 5 minutes, if I was lucky. Or I might just see a PA. I guess I never thought about how I wasn’t really being seen as a person anymore, just one more in the list of patients they needed to fit in in a day.

My new doctor was such a different experience. I only waited 5 minutes in the waiting room, and then went right to the exam room. They asked if it was OK if a resident came in first. I said that was OK and the nicest man came in and asked me some questions of my MS history. Shortly thereafter, my new doctor came in. She was amazing. She asked tons of questions. I was a little incensed that after seeing my previous doctor for 17 years, they had sent only 1 1/2 pages of a summary of my medical history. Thousands of pages condensed to 1 1/2 pages? How can that be? So my new doctor asked every question you could imagine. I felt like someone was listening. Don’t get me wrong: i am not bashing my previous doc. He has an aggressive philosophy when it comes to MS and for someone like me, that was necessary. She and I both agreed that it was time for me to change meds. Get me off the Tysabri for a few reasons: I had been on it over 5 years. I had tested positive for the JC Virus, and my titers were elevated. Seeing that the longer you are on it, the more apt you are to contract PML – a fatal brain illness, and I was testing positive for all of the indicators for it, it was time to get off it. I guess I was a little upset that my previous doc had not pursued that. So now I am onto the bad part – I have to go back on Copaxone, a shot everyday. I did it for 7 years, and honestly I’m not sure if I can mentally do this.

So what had stressed me out horribly, when he told me I needed to find a new doc, turned out to be a blessing in disguise. I really felt I connected with my new doc and the bonus is anytime I need any infusions, they will come to my house to do it! No more traveling to the doc’s office for it! Woo hoo!!!

But now I am dealing with a new symptom: a tingling sensation shooting down my left leg. It almost feels like electric currents throbbing down my leg. I have looked it up and have found this on about.com:
“Numbness and tingling are two of the most common symptoms of multiple sclerosis. Pretty much all of us with multiple sclerosis (MS) have experienced paresthesia, the special form of numbness and tingling that accompanies MS.” (http://ms.about.com/od/signssymptoms/a/numbness.htm)
So basically I’m supposed to just deal with it I guess. But all of a sudden I am having a panic attack that this is how it’s going to be forever. Doesn’t mean I have to like it. Doesn’t mean I have to take it. I guess the worst part of having MS is the uncertainty. Am I having another attack? Am I going to have this symptom forever?

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