So I've been M.I.A. for a couple years now and I guess I should update you on what's going on now. To start off I'd like to say that a lot has changed, and when I mean a lot I mean WOW really that much huh?!
Let's start off with since you've heard from me last I've got a new Neuro Doc and she is amazing. Not that my other Doc wasn't just that this one has a little better understanding of SPS, and isn't afraid to tell you see means business! She isn't the only neuro on my case now it's a team of doctors that collaborate, but she's the GRAND S*TH when it comes to my case. I've got the same PCP which I wouldn't change in the world, unless she was like, "Vanessa I can no longer have you as my patient anymore." Trust me I've heard that once or twice since my last post. So ok lets get to the good stuff right?!
Well new Neuro... Check!
No more IVIG for more then a year... WAIT WHAAAAT!!! Yeah that was me from September of 2011 to August of 2012! See I was Neuro less during that time and each neuro I saw was crazier then the last three I had seen. I couldn't handle it anymore nor could my PCP as much as she tried SPS is difficult and I don't make it easy. I mean I was a Pre Med student finished on my Biology courses and did some extra Anatomy and Physiology classes, so I was a little Miss know it all and was never wrong!
So one day I'm in her office and she gets called out from the exam room it's a young lady calling saying that her mother is being diagnosed with SPS in the hospital and right away she is yeah NO! She tells her to try to make an appointment with the University Hospital to get a proper diagnoses... She walks back in and tells my mom and I, " I've already have one SPS patient I don't need two!" All joking aside she calls one of her nurse staff to come in and make two appointments with University Hospital one for the "Lady" and another for me! She is says this way we can get you in to see a neuro...
Not a week goes by and I get a call from the University saying I have an appt. scheduled for this date. I'm like ok that was fast when Dr. B. did said it was going to take a while, but I guess not I told my mom," I guess they had more openings then she thought?:/" Anyways I go to the appt. and right away Dr. S. is going crazy running test...MIND YOU I've already had these test done many times before. I'm having spasms left and right being she is moving my legs in ways yeah my legs don't move and she's just say, "huh?" "yeah?" I'm like ok by this time ok Doc what's up! She goes on to tell me I have SPS ok THANK YOU I've known that for some time now...Then she goes on to tell me you have some different traits then some of my other SPS patients ok I've heard that too... What else do you got for me she then goes on to tell me I've got a complicated case AGAIN I've heard that! She's going on about treatment options, medication, physical therapy, occupation therapy, and all this other stuff. I felt I was back at the Mayo Clinic getting told the same thing, and in my head I'm thinking GREAT look at what I've got my self in to again! Then she stopped and asked me if I understood what she was talking about I was like yes I've heard it all before and now your just going to dismiss me and tell me to see you in six months. She looks at me and says NO! She goes on to tell me we are going to try all the options I've mention to you and we are going to get you back in remission. I look at her and I'm like WOW you care! For the past year I've seen all these neuros who think they know it all when it comes to SPS and I've really need to do was listen to my Aunt who had been telling please let me make you an appt. to see the doctor at the University.
Well I got back to my PCP and tell her what happened with Dr. S. and she like I still haven't been able to get my other patient in. Not to mention I JUST sent your paper work... Oh well I guess SPS does give you the VIP treatment in certain situations. The neuro did want to run a EMG study done just because the other was inconclusive and yeah this one came out so freaken POSTIVE that she didn't even want to do the other side of my body. She was puzzled though on why I was on Keppra a anti-seizure medication, because she asked if I had ever had a one and I said no not that I know of. So she set up a week long EEG study.
Then came the treatment options I wanted IVIG again because I felt I was doing great on it, but she did want me to keep an open mind on the other treatments out there. I just couldn't I wanted IVIG so I was going to get IVIG, because like I said I couldn't for I just couldn't think of me on a chemo drug or on something that can lower my defensives even more remember I do have Primary Immunodeficiency to be more specific hypogammaglobulinemia that alone makes me prone to infections.
So we started back on IVIG in August 2012!
Let's start off with since you've heard from me last I've got a new Neuro Doc and she is amazing. Not that my other Doc wasn't just that this one has a little better understanding of SPS, and isn't afraid to tell you see means business! She isn't the only neuro on my case now it's a team of doctors that collaborate, but she's the GRAND S*TH when it comes to my case. I've got the same PCP which I wouldn't change in the world, unless she was like, "Vanessa I can no longer have you as my patient anymore." Trust me I've heard that once or twice since my last post. So ok lets get to the good stuff right?!
Well new Neuro... Check!
No more IVIG for more then a year... WAIT WHAAAAT!!! Yeah that was me from September of 2011 to August of 2012! See I was Neuro less during that time and each neuro I saw was crazier then the last three I had seen. I couldn't handle it anymore nor could my PCP as much as she tried SPS is difficult and I don't make it easy. I mean I was a Pre Med student finished on my Biology courses and did some extra Anatomy and Physiology classes, so I was a little Miss know it all and was never wrong!
So one day I'm in her office and she gets called out from the exam room it's a young lady calling saying that her mother is being diagnosed with SPS in the hospital and right away she is yeah NO! She tells her to try to make an appointment with the University Hospital to get a proper diagnoses... She walks back in and tells my mom and I, " I've already have one SPS patient I don't need two!" All joking aside she calls one of her nurse staff to come in and make two appointments with University Hospital one for the "Lady" and another for me! She is says this way we can get you in to see a neuro...
Not a week goes by and I get a call from the University saying I have an appt. scheduled for this date. I'm like ok that was fast when Dr. B. did said it was going to take a while, but I guess not I told my mom," I guess they had more openings then she thought?:/" Anyways I go to the appt. and right away Dr. S. is going crazy running test...MIND YOU I've already had these test done many times before. I'm having spasms left and right being she is moving my legs in ways yeah my legs don't move and she's just say, "huh?" "yeah?" I'm like ok by this time ok Doc what's up! She goes on to tell me I have SPS ok THANK YOU I've known that for some time now...Then she goes on to tell me you have some different traits then some of my other SPS patients ok I've heard that too... What else do you got for me she then goes on to tell me I've got a complicated case AGAIN I've heard that! She's going on about treatment options, medication, physical therapy, occupation therapy, and all this other stuff. I felt I was back at the Mayo Clinic getting told the same thing, and in my head I'm thinking GREAT look at what I've got my self in to again! Then she stopped and asked me if I understood what she was talking about I was like yes I've heard it all before and now your just going to dismiss me and tell me to see you in six months. She looks at me and says NO! She goes on to tell me we are going to try all the options I've mention to you and we are going to get you back in remission. I look at her and I'm like WOW you care! For the past year I've seen all these neuros who think they know it all when it comes to SPS and I've really need to do was listen to my Aunt who had been telling please let me make you an appt. to see the doctor at the University.
Well I got back to my PCP and tell her what happened with Dr. S. and she like I still haven't been able to get my other patient in. Not to mention I JUST sent your paper work... Oh well I guess SPS does give you the VIP treatment in certain situations. The neuro did want to run a EMG study done just because the other was inconclusive and yeah this one came out so freaken POSTIVE that she didn't even want to do the other side of my body. She was puzzled though on why I was on Keppra a anti-seizure medication, because she asked if I had ever had a one and I said no not that I know of. So she set up a week long EEG study.
Then came the treatment options I wanted IVIG again because I felt I was doing great on it, but she did want me to keep an open mind on the other treatments out there. I just couldn't I wanted IVIG so I was going to get IVIG, because like I said I couldn't for I just couldn't think of me on a chemo drug or on something that can lower my defensives even more remember I do have Primary Immunodeficiency to be more specific hypogammaglobulinemia that alone makes me prone to infections.
So we started back on IVIG in August 2012!
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