As we all know, life never goes according to plan, ESPECIALLY when you're sick, at least that's the way it seems to me. Today I was supposed to have a two-fer at Kaiser, have my nerve conduction test and then go downstairs and have my endoscopy where they were going to inject my pylorus (the sphincter-like opening at the bottom part of my stomach) with botox to paralyze it open. Well, I get to my Neurologist's office on time and commence to wait and wait and wait for over and hour to the point where it was getting time for me to be downstairs for the endoscopy. So my nerve conduction test was rescheduled to Friday morning at 10am (and I see the Ophthalmologist at 4pm on Friday) and then I "ran"--Christine's version of running, which is more like a healthy person's slow walk--to Gastroenterology and get checked in.
When they call me back they asked me when the last time was that I ate and I explained to the nurse that I don't actually eat solid food, but I had a protein shake at 7:45 this morning, but proceeded to evacuate it at around 11:30am, so there's nothing in my stomach. Then when they tried to start an IV, I was dehydrated, so it took two stabs to get an IV in. The first one they tried, the vein blew...I guess that's a sign of dehydration. Then the next thing I know I was wheeled into the procedure room where I quickly asked my doctor about referring me to a nutritionist because, if this botox procedure works, I will be able to eat some things but not other things, so I feel like I need some guidance. My doctor totally agreed to it (he's a cool guy) and then they proceeded to load me up with meds and the next thing I know it was done!
In recovery, my mom got to come and be with me and my doctor came by to talk with us. I don't remember much of what he said because I was in and out of consciousness (I was LOADED), but I do remember him saying it would take about 2 weeks before we would really know whether or not the procedure worked or not. If it DOES work, then the effects can last up to 9 months (I think) then when it starts wearing off he will have to do a surgery where he permanently opens up the pylorus. If it does NOT work, then it's kind of back to the drawing board. It could mean a number of things for me: TPN (an IV feeding tube that goes down the neck), a feeding tube in the stomach, or a surgery to remove part of my stomach and attaching it to my small intestines. I'm cautiously optimistic that the botox is going to work...I don't want to get my hopes up, only to have them dashed if it doesn't work, so I'm trying to just be kind of indifferent about the whole thing. I've just been ill for so long and had several medications not work for me that I've learned to not rely too heavily on the reliability of any medication or procedure.
Friday is going to be a long, interesting, and fun day all wrapped up into one. I have the nerve conduction at 10am, the test that I "lovingly" refer to as the "zappy zappy" test because the doctor will literally be shocking me. Then at 4pm I see the Ophthalmologist because the Neurologist thought he had seen something cloudy behind my right eye, so he's having that checked out. Now, I don't know if the eye doctor is going to dilate my eyes or not. If she does, I'm in trouble because I'm going to my friend's bridal shower after that and everyone will be signing! The last time I had my eyes dilated, they stayed that way for HOURS and I couldn't see much of anything, so this could be potentially problematic.
That's the latest and greatest news in Christine's Dizzy Life!
Wednesday, September 22, 2010
Saturday, September 11, 2010
The latest from the Neurologist (9-11-10)
There are some of you that will receive this that already know this information, so I'm sorry that you are getting this once again, but here is the scoop for those of you who have yet to hear the latest in the saga that is my life. I saw my Neurologist on Tuesday for a recheck to see how the Vitamin B is working for me and to go over the outcome of my MRV (just another fancy MRI). I already knew the results of my MRV--normal--however, I needed to let the doctor know that I am having a HORRIBLE time taking the Vitamin B due to my inability to eat anything OR when I do attempt to eat anything it just comes back for a visit hours later, completely undigested. For example: I attempted eating a couple of table spoons of macaroni and several hours later I ended up vomiting up whole pieces of it. When I told the doctor this he asked me if I had ever had a Gastric Emptying Test, a test where you eat something that has a radioactive dye in it and then you lie on a table as a series of x-rays are taken to monitor how your stomach is working. I told him that I had months ago (roughly in June), but had never heard any results, so I had assumed that everything was alright because that is generally how it works within the Kaiser system--you don't hear anything, that means the test was fine. So my Neurologist looks up the results of the test and discovers...I had ABNORMAL results! This gives me the diagnosis of Gastroparesis. Here is the definition of Gastroparesis according to the Mayo Clinic: Gastroparesis is a condition in which the muscles in your stomach don't function normally.
Ordinarily, strong muscular contractions propel food through your digestive tract. But in gastroparesis, the muscles in the wall of your stomach work poorly or not at all. This prevents your stomach from emptying properly. Gastroparesis can interfere with digestion, cause nausea and vomiting, and play havoc with blood sugar levels and nutrition.There is no cure for gastroparesis. Making changes to your diet may help you cope with gastroparesis signs and symptoms, but that's not always enough. Gastroparesis medications may offer some relief, but some can cause serious side effects.
I am already taking one of the two suggested medications for this condition, but it doesn't, obviously, seem to be doing it's job. Just in the last week things seem to have gotten worse as far as my stomach is concerned. I have officially lost 60 pounds, which is nice, but I've done it in the most unhealthy way possible. Definitely not by choice! My Neurologist is sending me to see a Gastrointerologist (G.I doctor) in the hopes that he will be able to help me get this Gastroparesis under control. I don't know if I'm considered as having a mild, moderate, or sever form of the condition; I guess I'll find out when I see the G.I doctor. My Neurologist said that this condition could be/is related to the autonomic nervous system and that I might have what is called autonomic neuropathy. Autonomic neuropathy is defined by the Mayo clinic as: Autonomic neuropathy is a nerve disorder that affects involuntary body functions, including heart rate, blood pressure, perspiration and digestion.It isn't a specific disease, instead autonomic neuropathy refers to damage to the autonomic nerves. This damage disrupts signals between the brain and portions of the autonomic nervous system, such as the heart, blood vessels and sweat glands, resulting in decreased or abnormal performance of one or more involuntary body functions. Autonomic neuropathy can be a complication of a number of diseases and conditions. And some medications can cause autonomic neuropathy as a side effect. Signs, symptoms and treatment of autonomic neuropathy vary depending on the cause, and on which nerves are affected. In order to check to see if I have this problem, my Neurologist is going to do a nerve conduction test on me at the end of this month, because it can effect not only my stomach (like it is with the gastroparesis), but my arms and legs as well.
Mentally, emotionally, and spiritually I am hanging in there fairly well. I know that God has a reason for this happening in my life and He won't give me more than I can handle. I'm a tough ol' bird--I think I get that from my grandma--but I do get lonely out here sometimes. I know that my friends have families, jobs, and live of their own to live and the last thing on their mind is to visit a sick friend that lives in the sticks...but at the same time I can't help but feel forgotten some times. I don't hold it against anyone, it's not in my nature to do that, so this is in no way meant to be a guilt trip on anyone.
Anyhow, that is the scoop for right now. Oh! I almost forgot! My Neurologist is referring me out to Kaiser L.A to be looked at by them. Just to make sure that he isn't missing anything...it's a good thing. He's the first one that's really taking my illness seriously aside from my primary care doctor. Okay, that is it for now. I'll try to write more often again. I backed off because there's only so much you can write about throwing up and being dizzy...I appreciate all of the prayers!
Ordinarily, strong muscular contractions propel food through your digestive tract. But in gastroparesis, the muscles in the wall of your stomach work poorly or not at all. This prevents your stomach from emptying properly. Gastroparesis can interfere with digestion, cause nausea and vomiting, and play havoc with blood sugar levels and nutrition.There is no cure for gastroparesis. Making changes to your diet may help you cope with gastroparesis signs and symptoms, but that's not always enough. Gastroparesis medications may offer some relief, but some can cause serious side effects.
I am already taking one of the two suggested medications for this condition, but it doesn't, obviously, seem to be doing it's job. Just in the last week things seem to have gotten worse as far as my stomach is concerned. I have officially lost 60 pounds, which is nice, but I've done it in the most unhealthy way possible. Definitely not by choice! My Neurologist is sending me to see a Gastrointerologist (G.I doctor) in the hopes that he will be able to help me get this Gastroparesis under control. I don't know if I'm considered as having a mild, moderate, or sever form of the condition; I guess I'll find out when I see the G.I doctor. My Neurologist said that this condition could be/is related to the autonomic nervous system and that I might have what is called autonomic neuropathy. Autonomic neuropathy is defined by the Mayo clinic as: Autonomic neuropathy is a nerve disorder that affects involuntary body functions, including heart rate, blood pressure, perspiration and digestion.It isn't a specific disease, instead autonomic neuropathy refers to damage to the autonomic nerves. This damage disrupts signals between the brain and portions of the autonomic nervous system, such as the heart, blood vessels and sweat glands, resulting in decreased or abnormal performance of one or more involuntary body functions. Autonomic neuropathy can be a complication of a number of diseases and conditions. And some medications can cause autonomic neuropathy as a side effect. Signs, symptoms and treatment of autonomic neuropathy vary depending on the cause, and on which nerves are affected. In order to check to see if I have this problem, my Neurologist is going to do a nerve conduction test on me at the end of this month, because it can effect not only my stomach (like it is with the gastroparesis), but my arms and legs as well.
Mentally, emotionally, and spiritually I am hanging in there fairly well. I know that God has a reason for this happening in my life and He won't give me more than I can handle. I'm a tough ol' bird--I think I get that from my grandma--but I do get lonely out here sometimes. I know that my friends have families, jobs, and live of their own to live and the last thing on their mind is to visit a sick friend that lives in the sticks...but at the same time I can't help but feel forgotten some times. I don't hold it against anyone, it's not in my nature to do that, so this is in no way meant to be a guilt trip on anyone.
Anyhow, that is the scoop for right now. Oh! I almost forgot! My Neurologist is referring me out to Kaiser L.A to be looked at by them. Just to make sure that he isn't missing anything...it's a good thing. He's the first one that's really taking my illness seriously aside from my primary care doctor. Okay, that is it for now. I'll try to write more often again. I backed off because there's only so much you can write about throwing up and being dizzy...I appreciate all of the prayers!
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