Let’s try this again... I’m going to try to do a post each week or month at least. That’s my goal!!!
Not going to lie a bit long... Last month I went to the neurologist, and got news that I could be having either be having a flare up or having a relapse. For the past couple of months I had been feeling off with more spasms and pain the usual. I can usually take pain pretty good by now, but there were days I just couldn’t move felt frozen in my own body. So after New Year I had IVIG scheduled for Thursday, Friday, Monday, and Tuesday. Well during the weekend I had a party to attend out of town. Honestly I don’t think I did much during the party but it did run late. Both days I felt fine no problem with IVIG side effects nothing, but then came Monday first of all I had to wake up early to go get blood drawn. When I went in I asked for I don’t know how to explain it. You know when they tell you that you know your body the best I just had this feeling to ask them to run my GAD levels again. In reality I mean I already know that I have SPS why should I ask them to run it again. Well, Monday continued and right in the middle of IVIG I start having stomach spasms and vomiting over and over again. For me I thought it could be the long week, it could be a side effect of the IVIG, but honestly it could have been many of things. The following week I went in to see the endocrinologist to get all my lab results. She starts of by saying everything looks good although she did see that I was creating more insulin then other times, which could result in the blood sugar drops I had been having. Also there was something else that I can’t remember at the moment that came up. Then she went into my GAD results my levels they were off the charts. She couldn’t believe it, and she what was I feeling which I told her why. She said well I’m no specialist on SPS, but I can tell you that those number have nothing to do with your diabetes.
It so happened that I was seeing the neurologist that afternoon we took the lab results and I got examined. She couldn’t believe it! I kind of got in trouble for not mentioning earlier by email or phone call, but what could I say I feel sick can I come in and see you. This isn’t any doctor she’s one of the top specialist in movement disorders in San Antonio and works of the UT Health System. I could have mention it to my PCP, but really I didn’t want anymore pain killers or test done right smack in the middle of the holidays. So I waited till I was going to get my blood work drawn and I knew I was going to see the doctors. Now I’m waiting to see what’s up she gave two back to back IVIG boosts. Which for me is instead of going every four weeks of getting IVIG treatment I’d be going three weeks for two months then back to four weeks, and she made it a point that I would see her the week after. I guess for one to see if there are any changes, and two to see how I’m feeling if I felt a difference.
Just not sure all I know is that last week I got my IVIG again and I’ve been waking up with hard core spasms on my left side mostly. Again I could have gotten a bad batch of IVIG, or it could be something else all together. Today I see my PCP I don’t think she has gotten any notes from the doctors about what’s going on, but if she has I know I’m going to get a earful of why I didn’t tell her how I had been feeling. Honestly right now I’m not sure which one it could be a flare up or relapse... not to mention if it is a relapse and she decides it might be better to do every three weeks I’m not sure what my infusion center is going to do they are already complaining about the fact that I have a four day infusion that runs from literally 9 to 5ish. The head nurse told me it’s just to hard to find someone to do those four days straight. It wasn’t a problem before, but that’s for different reasons all together. So they are S.O.L. , which makes me even more S.O.L! If it hasn’t been one thing it’s been another.
It so happened that I was seeing the neurologist that afternoon we took the lab results and I got examined. She couldn’t believe it! I kind of got in trouble for not mentioning earlier by email or phone call, but what could I say I feel sick can I come in and see you. This isn’t any doctor she’s one of the top specialist in movement disorders in San Antonio and works of the UT Health System. I could have mention it to my PCP, but really I didn’t want anymore pain killers or test done right smack in the middle of the holidays. So I waited till I was going to get my blood work drawn and I knew I was going to see the doctors. Now I’m waiting to see what’s up she gave two back to back IVIG boosts. Which for me is instead of going every four weeks of getting IVIG treatment I’d be going three weeks for two months then back to four weeks, and she made it a point that I would see her the week after. I guess for one to see if there are any changes, and two to see how I’m feeling if I felt a difference.
Just not sure all I know is that last week I got my IVIG again and I’ve been waking up with hard core spasms on my left side mostly. Again I could have gotten a bad batch of IVIG, or it could be something else all together. Today I see my PCP I don’t think she has gotten any notes from the doctors about what’s going on, but if she has I know I’m going to get a earful of why I didn’t tell her how I had been feeling. Honestly right now I’m not sure which one it could be a flare up or relapse... not to mention if it is a relapse and she decides it might be better to do every three weeks I’m not sure what my infusion center is going to do they are already complaining about the fact that I have a four day infusion that runs from literally 9 to 5ish. The head nurse told me it’s just to hard to find someone to do those four days straight. It wasn’t a problem before, but that’s for different reasons all together. So they are S.O.L. , which makes me even more S.O.L! If it hasn’t been one thing it’s been another.
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