For those who have been conversing with me over the years (a few that come to mind: mamabug, marti, koko, julesa, seasha, and more ... I might have spelled some of those wrong), here's an update.
You probably know me well enough by now to know that I disappear for a while, so I'm sorry if I missed anything that you've said to me!! Mamabug - your exercise check in comes to mind! I just got so overwhelmed last fall. Last september I DID go to the appointment with the resident neuro that was overseen by the head neuro that was/is an MS specialist, and that was the first MS specialist I've been able to see [I live 3 hours or more away from any MS specialist]. I left there SO DISCOURAGED by how I was treated [they were both very nice, but that's not the issue]. It just seemed like the resident neuro was really excited about getting to the bottom of my issues, but then the head guy came in and shot everything down. Instead of getting updated MRI scans like the resident neuro suggested, he said I needed some small fiber nerve test (the name escapes me). He also did some blood work for things like sjogren's and a few more autoimmune diseases that can show up in bloodwork. I looked everything up when I got back to the van (my friend drove me) and I literally fit NONE of them ... maybe I had one symptom from each, but it just proved to me that he did not listen to a word I said.
To add insult to injury, he set the next appointment for 4 months. In my mind I'm thinking, "4 months! That's 1/3 of a year away!" Geesh. I already have anxiety about going ... and 4 months makes it easy to talk myself out of going.
I was so stressed out, frustrated, anxious, discouraged, etc. All the tests came back negative (no surprise there), and I opted out of the follow up appointment. I just couldn't do it; it didn't "feel right" to me.
In the meantime, I was finally approved for medicaid for disabled people. My GP gave me a referral to an MS center in St. Louis - Dr Green [MS Specialist].
My appointment with Dr Green was last week. This time instead of crying for frustration and discouragement, I cried for thankfulness. I have NEVER so far in this journey had a doctor that understood everything I was saying and going through, and in fact she could explain it better than me. She was shocked at how no one has gotten to the bottom of my problems. I reminded her that it's partially my fault for getting frustrated over and over again and giving up for years at a time before trying again. She felt like my frustration was justified because of all the feet-dragging and brick walls.
She was also shocked that I have only had one scan of my neck and spine, and it was over 6 years ago. She said most of my symptoms would show activity in my spine, not my brain, so why has no one ordered an updated scan?!?!?! She actually seemed upset about it.
I could understand her, she was thorough, and I liked her personality. I felt at ease with her, which really helped my issues with confusion and anxiety around doctors. Of course my friend was with me too - I always bring him so he can remember what was said and help add to the conversation. He liked her just as much as I did.
She said she was going to get to the bottom of this once and for all. If it's MS, let's get it diagnosed. If it's not MS, let's figure it out and get that diagnosed. She told me to set up the neck and spine MRI for 2 weeks, and then set up an appointment with her right afterward. So, on the 14th I go in for the scans and then see her right after the scans at 11:30. That appointment with her will include the general neuro exam since all we did was talk during the first appointment.
Could this be the end of it all?!?!? I sure hope so.
Well, there it is.
My walking continues to get worse, but with smart planning I can still [usually] get through my day ok. Lots of breaks and rest. Sometimes though I do have to rest pretty much all day. I try to get up and do something every hour or two, but sometimes that is too much. My son is fixing up a house for me that should be ready in a few months. Everything in it will pretty much be new, and will be set up just for me. I'm excited! We're all hoping it will make my life more peaceful. Though I am in my own place right now, it is still what we call "grand central station" - a hub of activity from my family that live on the same property. People come in on a whim, which usually interrupts the flow of my day and confuses me.
I'll be moving to a whole new property where my youngest will be living, but our houses will be a good distance apart (I won't even be able to see his house from my house). My house will no longer be the center of activity, and my day will be much quieter. We all think a season of quiet will be really good for me. I used to be so social and love to host meals. I miss that, but oh well. That's just how life goes ... go with the flow, right?!
That's all for now I guess. Thanks for your encouragement over the years! Hopefully soon I'll be out of limbo.
You probably know me well enough by now to know that I disappear for a while, so I'm sorry if I missed anything that you've said to me!! Mamabug - your exercise check in comes to mind! I just got so overwhelmed last fall. Last september I DID go to the appointment with the resident neuro that was overseen by the head neuro that was/is an MS specialist, and that was the first MS specialist I've been able to see [I live 3 hours or more away from any MS specialist]. I left there SO DISCOURAGED by how I was treated [they were both very nice, but that's not the issue]. It just seemed like the resident neuro was really excited about getting to the bottom of my issues, but then the head guy came in and shot everything down. Instead of getting updated MRI scans like the resident neuro suggested, he said I needed some small fiber nerve test (the name escapes me). He also did some blood work for things like sjogren's and a few more autoimmune diseases that can show up in bloodwork. I looked everything up when I got back to the van (my friend drove me) and I literally fit NONE of them ... maybe I had one symptom from each, but it just proved to me that he did not listen to a word I said.
To add insult to injury, he set the next appointment for 4 months. In my mind I'm thinking, "4 months! That's 1/3 of a year away!" Geesh. I already have anxiety about going ... and 4 months makes it easy to talk myself out of going.
I was so stressed out, frustrated, anxious, discouraged, etc. All the tests came back negative (no surprise there), and I opted out of the follow up appointment. I just couldn't do it; it didn't "feel right" to me.
In the meantime, I was finally approved for medicaid for disabled people. My GP gave me a referral to an MS center in St. Louis - Dr Green [MS Specialist].
My appointment with Dr Green was last week. This time instead of crying for frustration and discouragement, I cried for thankfulness. I have NEVER so far in this journey had a doctor that understood everything I was saying and going through, and in fact she could explain it better than me. She was shocked at how no one has gotten to the bottom of my problems. I reminded her that it's partially my fault for getting frustrated over and over again and giving up for years at a time before trying again. She felt like my frustration was justified because of all the feet-dragging and brick walls.
She was also shocked that I have only had one scan of my neck and spine, and it was over 6 years ago. She said most of my symptoms would show activity in my spine, not my brain, so why has no one ordered an updated scan?!?!?! She actually seemed upset about it.
I could understand her, she was thorough, and I liked her personality. I felt at ease with her, which really helped my issues with confusion and anxiety around doctors. Of course my friend was with me too - I always bring him so he can remember what was said and help add to the conversation. He liked her just as much as I did.
She said she was going to get to the bottom of this once and for all. If it's MS, let's get it diagnosed. If it's not MS, let's figure it out and get that diagnosed. She told me to set up the neck and spine MRI for 2 weeks, and then set up an appointment with her right afterward. So, on the 14th I go in for the scans and then see her right after the scans at 11:30. That appointment with her will include the general neuro exam since all we did was talk during the first appointment.
Could this be the end of it all?!?!? I sure hope so.
Well, there it is.
My walking continues to get worse, but with smart planning I can still [usually] get through my day ok. Lots of breaks and rest. Sometimes though I do have to rest pretty much all day. I try to get up and do something every hour or two, but sometimes that is too much. My son is fixing up a house for me that should be ready in a few months. Everything in it will pretty much be new, and will be set up just for me. I'm excited! We're all hoping it will make my life more peaceful. Though I am in my own place right now, it is still what we call "grand central station" - a hub of activity from my family that live on the same property. People come in on a whim, which usually interrupts the flow of my day and confuses me.
I'll be moving to a whole new property where my youngest will be living, but our houses will be a good distance apart (I won't even be able to see his house from my house). My house will no longer be the center of activity, and my day will be much quieter. We all think a season of quiet will be really good for me. I used to be so social and love to host meals. I miss that, but oh well. That's just how life goes ... go with the flow, right?!
That's all for now I guess. Thanks for your encouragement over the years! Hopefully soon I'll be out of limbo.
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