Wednesday, March 6, 2013
The Ever ON-Going Saga of Extremely Painful Legs & Double Vision
I also went through another EMG there, which was ordered by my pain doctor. I know from just what I was told Monday, there is some neuropathy, and a nerve or nerves pinched some place or places, but he did not elaborate. So, I will have to wait for the results from my pain doctor, before I really know just how bad, where and what that means. I gather my right foot, heel, etc. may be showing the neuropathy in some way, from what he said. It is like this "doctor" I saw on Monday, wanting yet ANOTHER CT, exactly like one done not even 6 months ago, but he wanted it done by "someone in Dallas". Well I realize some machines are "better" or newer than others, but if nothing is there then , then the odds are NOTHING IS THERE NOW! Besides just about every CT and/or MRI I had in the past was "wrong", or inconclusive. It took surgery to find out the truth on every one where joints were involved. From starting years ago, with a left knee issue, the MRI did not show a whole lot wrong, yet when surgery was done, it was a "total mess" per the doctor. Same thing with both knees, and my shoulder, they did not show up that badly on the CT's or MRI's, BUT AGAIN they were totally degenerated and in need of replacements. And they were all replaced! In fact with my right shoulder, my doctor finally admitted to me that he was not able to "see" all of the damage and deterioration on the scans. So, it goes to prove they may be inaccurate either way, for the good or bad. It is very difficult for me to trust any scans now since so many did not come up to show the real issues. So, I refuse to repeat tests that I feel are not necessary anymore. Yesterday I went yet to ANOTHER NEUROLOGIST, getting RIDICULOUS! I can't even keep up with them anymore and which is doing what to me!!! Anyway, I went to "appease" my PCP, who did not want me to wait this entire 5 months with the double vision situation. So, I agreed to see this regular neurologist while waiting to see the "special" optho-neurologist in April. I knew again this was a wait of my money and time basically, but I did at least find out a couple of things. First of all this one for a change is NOT test happy. In fact he admitted he does NOT like to redo tests when they have been done. He prefers to get the results, (which my other doctor did NOT send them before my visit as they were told), and he also talked to me about the possibility of the Lupus having something to do with the double vision, plus he seems to think it is possible that I may have Myasthenia gravis, which at first scared the hell out of me. What I did not realize is, that it is another autoimmune disorder. He also told me, which much of course I know from such extensive Lupus research myself, that vasculitis maybe a part of it, but he tended to lean towards the MG. I do not have the "Ptosis", the droopy eye lids, but some do not. Actually he was the first one that made sense. I have have worse symptoms the more tired I am, or if I do not get much sleep. I am always worse in the evenings. And I am not sure if that doctor in Dallas did the particular blood test for this, but even at that it maybe be "serum negative" and I still have it. Anyway, I decided I refuse to go to all of the specialists (or the new ones this doctor suggested on Monday). I am not having another CT right now. I do have updated blood work by my PCP tomorrow and I am going to mention the MG so he can decide if he wants to do the blood test for that while they are drawing blood. IF it is Lupus or MG, or they never find out why I have double vision, I may just have to live with it, as I am doing now. I live with some pain, I live with many other symptoms that are unpleasant, thus this maybe one I must add to the list. If they find nothing, then they just find nothing, and I am just about at that place to say forget it, I will live with it. And then yesterday I call my pain doctor back, and leave a message for the Head woman there that knows me very well, and knows about my entire situation, she had dealt with me and the pain pump in depth. I asked her to please talk to my doctor about his reasons for wanting to do surgery right now on the pump catheter since the pain in somewhat better, or less for sure than it was. She called me back, left a message and told me, he said it was NOT necessary if I was somewhat in less pain now, and we COULD wait, and NOT do surgery yet. She said of course the other two girls never told him I said I was somewhat better and I wanted to hold off to see what the EMG looks like, and see how I do over the next days to come. If I get worse, and I am in extreme pain again, then we will face opening me up and looking at the pump. BUT, it goes to PROVE had I NOT BEEN educated enough about all of this, I may have went along with an not needed surgery for now! So, we must educate our selves and again I so agree, thank God for the internet!
Written by Rhia Steele