I have had a lot of unexpected things happen to me since I last posted. So let's start from the beginning...
As I told you, my neuropathy pain was getting worse and they kept increasing my medicines to try and get it back under control. However, it never happened. So, I called the GI doctor I saw last summer and made an appointment with him. I had not had a good experience at his office before, but the pain, dizzyness and nauseated feeling was getting worse and I had to go back. When I went back, I do not know if I finally explained the symptoms in a way he understood more or what, but he has decided the dizzy and nauseated feelings I experience on a daily basis is not a GI problem. He said he really thinks it is a neurological problem called Vaso Vagal Syndrome. Luckily it is a little more common than MALS, but for me to be properly diagnosed and treated for this syndrome I need to be sent to a neurologist. So, that is probably the next step for me, if the increased medicines he gave me would help any. Let me tell you, they have not helped, but just from him saying my symptoms fit this medical syndrome, I left his office feeling happier about my health than I have in a while. Typically, I feel like I never get good news when I am at the doctors...just look at my track record. haha. Even though, he was telling me that there was something else wrong with me and I would most likely have to see another doctor, I still was excited that it could be fixed and I do not have to live like this the rest of my life.
The next day, I saw Dr. Rastogi and Dr. Field. Since the Gabapentin seemed to have stopped working, Dr. Rastogi switched my neuropathy medicine to another kind of neuropathy medicine, Keppra (generic form). He also told me that I was to come back in a month and if I had not noticed a difference on this medicine then I needed to have a neurostimulator implanted. A neurostimulator would have leads placed along my spinal cord where the nerves to my stomach are and then the battery would be placed in my shoulder or near my lower hip where there is more tissue. Basically, this stimulator would help mask my pain by about 50 percent. I do not want this done. However, I sat there and listened to everything he had to say about it and then he told me I needed to tell Dr. Field (who I was going to see later that day) so that she could go ahead and do the psychological exam on me and put it in my file, in case the neurostimulator had to be done.
When I got home I started doing all this research on the neurostimulator. MedTronic is what Dr. Rastogi had given me a DVD and information on but I also looked up St. Jude Medical neurostimulator information as well. I just wanted to know everything I could about the situation.
...Meanwhile, my stomach pain and the nauseated feeling was getting really bad and while I had been at the doctors I had been told to go to my normal physician because they thought I had kidney stones or a bladder infection. So I went to Dr. Horner the same week I had gone to the other three and Dr. Horner thought I had something wrong with my kidneys so he sent me to have an ultra sound done and gave me some antibiotics just in case I did have some sort of infection. Then he told me to come back in a week to see how things were going. Throughout the weekend and next week the pain was becoming more centralized to a specific area. My mom started telling me she thought it might be my appendix and that I should just mention it to Dr. Horner when I saw him in a few days. By the end of my second appointment with Dr. Horner the stomach pain had gotten really bad. I could not sit still or get comfortable while he was trying to explain what he wanted to do next. He finally asked me to show him where the pain was again and when I pointed to my right side so he had me stand up and do something he called The Heel Drop test. I had to stand on my toes and then drop my heels, when I did that the pain was excruciating, it was unbelievable how such a little move created so much pain. So he immediately had me lay down on the table and he examined me while he had his nurse schedule an immediate ultrasound over at the hospital. In the end, it was my appendix. In fact, the nurses and doctors were scared it was going to rupture while I waited to go into surgery.
The surgeon said taking my appendix out would not stop the neuropathy pain. However, I have not had any extra neuropathy pain since my appendix was taken out!! How crazy is that?! Don't misunderstand me, I have had some neuropathy pain but that has only been when I eat (which is expected). It is unbelievable how much better I feel. I mean I am still super sore and in pain but not near what it has been for me the past couple of months. I see Dr. Rastogi and Dr. Field again this Thursday, maybe they will agree with me and think my appendix has had something to do with all this pain as well? I don't know, but I do know as much as I did not want to have another surgery, I feel like it may have solved a few of my problems. I guess only time will tell...
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