seeking neurologist in Syracuse NY
AnonymousFebruary 7, 2009 at 8:50 pm
I have found the love of my life in the Syracuse, NY area. I currently live in KY and will be needing to find a GOOD neurologist up there that will allow me to continue my IVIG treatments. I’m currently taking treatments at my local IV clinic 3 days every 3 weeks for my CIDP and have been taking them since 2005. I hope to be moving this summer and will need to be able to transition as seamlessly as possible. I have in the past had to postpone my treatments for various reasons and have ended up declining to the point of being hospitalized, nearly every time.
Also, any info you can share regarding moving, in general, when you are in the middle of a treatment plans similiar to mine. I could use all the advise I can get. I was told at my last check-up that I should plan on taking them on a simniliar schedule for the rest of my life. It was very hard to hear that but at least I have a treatment that works fairly well for me, as I know many aren’t so lucky.
Thanks for any suggestions and hope you all are having a great year.
AnonymousFebruary 8, 2009 at 5:40 am
I do not know any neurologists in New York, but I have a few suggestions. You are doing exactly right to start far ahead of time to find one or two. You should get your records sent to the neurologists and seek new patient appointment which sometimes can take months to get. Also, if possible, I would make this appointment before you move so that you can meet the neurologist and discuss continuation of care and issues before moving so that there is little chance of a break in therapy. This is to make the move less stressful to you–to know that the health concern is as organized as it can be because it is so very important to your health. The reason to have a back-up neurologist is that even “good” neurologists may have a different approach than you are used to having or be really hard to get in to see or whatever. There are a lot of variations in approach to this disease. If you go visit one and just do not feel that person “fits” with your needs–in communication, access, approach, whatever, you already have another option. If that first person is great, just cancel the appointment with the other. If the first is not optimal for you, then at least you have had a good excuse to visit your honey!
Also since you have an infusion plan that works for you, have detailed records of the infusion sent as well–including type of immunoglobulin including if liquid or lyophilized that it reconstituted, exact premedications, doses, and infusion rates. As much as possible use exactly this the first time. Moving is a stress–it may be a good stress, but still it is really tiring so it will help peace of mind to know that any temporary setback in your disease is not due to subtle differences in administration or product. A lot of people think immunoglobulin is immunoglobulin, but it is more complex than that for most people and most people with GBS/CIDP cannot get the same rates of infusion as someone with immunodeficiency.
WithHope for a cure of these diseases.
AnonymousMay 26, 2009 at 1:57 pm
My move to NY has been postponed. I managed to get an appt with a Dr. D. Bradshaw on June 16th at Upstate University but looks like I’ll have to reschedule it. I was sooo wanting to get in with her since she has special interest in GBS but health and relationship on the rocks. They found I have blood clots in my lungs and started me on blood thinners. I ended up having my first IVIG treatment since going on these meds last week and had an allergic reaction. I spent mostof the week in the hospital and still trying to get back on my feet. They say its NOT related to the blood thinners but regardless I’m not feeling up to par.
In the meantime, my relationship has been rocked pretty hard as this has been the first ill spell since we met and it wasn’t handled well. I have decided to back off a bit and take things much slower to be sure the move is right for me and my daughter. I am planning to reschedule my visit with the dr up there and would love to meet up with ya when I’m in town. We had tickets to flyup over Memorial weekend but with me in the hospital, to saythe least, it didn’t happen. I’ve been looking today for tickets for her to flydown here as cheaper than flying us both up.
Keep in touch and hopefully we can meet soon.
AnonymousMay 27, 2009 at 3:39 pm
I am so sorry to hear you are not feeling well again. It is good to take things slow sometimes. I have been happily married for 19 years and GBS has really tested our love. There have been many stressful moments so I can see how illness can impact relationships. Let me know if you get up this way. I don’t know if there is a way to share emails without posting them to the world. My name is Diane, I used shie on a writing piece a long time ago and it fits my disposition at times. I will keep you in my thoughts and I hope you feel better soon.
You must be logged in to reply to this topic.