Been a little while

    • Anonymous
      May 13, 2008 at 10:00 am

      I haven’t posted much lately at least not about what is going on here. After my neuro walked out on me I saw another then she has now sent me to a neuromuscular doc in Fargo who I will see this Thur May 15th. I recently found out that the Neuro that made me worse has now left or was asked to leave not sure nobody is talking about where he is now or if he is but he is gone. Makes me even more angry that I cannot face him and show him how much worse he has made me. I no longer have use of my left arm and either of my legs and the pain is pretty bad they have moved me up to 100mcg fentynal and 600mg neurotin 3 times a day and then my lorecet and xanax as needed. A little over a month ago a friend of our told us his son-in-law was admitted to the hospital and told me his symptoms and since I have read everything on here that I could I asked him if they checked him for Miller Fisher Syndrome. The next day he said that they had diagnosed that later the evening that I was talking to him. His son-in-law was given the needed treatment immediately and he is home and uses a walker until he is too fatigued and has a manual wheelchair to use. I gave him the newsletters from here to read and our friend said he has read them and been online looking at several things. I do not know if he has added himself to our forum or not but hopefully he continues to get better but he does need to take it easy and let his body tell him when he needs to stop and not push it no matter how much he wants. Our friend asked how I came up with that as a possible problem and all I could say was after the amount of info you read about a condition you yourself have and this is along the same lines it is the first thing to pop in your head if the doctors don’t know anything right away.
      Good news is that I was approved for disability without having to get an attorney and should be getting my backpay within the next two weeks. My house has been chaos getting ready for my mothers 60th surprise birthday party which we had on Mothers Day. It was quite humorous when she thought as they pulled up that it was for someone else. Her birthday was on the 6th and she assumed we were all kind of ignoring her birthday just doing a few little things but boy was she surprised and now a day of rest before heading to Fargo tomorrow and then coming back on Friday and then on Saturday the 17th there is a benefit being done for us through my husband’s family who are having a dinner and silent auction. My two older boys graduate on the 24th in GA but my doctor will not let me go so my oldest is flying up here on June 10th until July 1st so it is going to be crazy I just hope that I can handle it all without getting worse and I am really hoping that this doctor I am seeing will do something the biggest problem is that she is leaving Fargo the end of June for Sioux Falls SD so another doc leaving like my first neuro that diagnosed me last May and then left for CA or AZ a week later. Still keeping everyone in my thoughts and prayers.

    • May 13, 2008 at 1:49 pm

      Hi Jody,
      Glad you are finally getting a doc to see you. Even if she leaves, maybe she can include detailed notes with a treatment plan to forward to the next doc. Great news about the disability! Wonderful news about your older boys. It seems like your family has about a years worth of events in the last couple of months!! Bring on the xanax!!!! Regarding the neurotnin, not sure, but pretty sure, Gene used to talk about it in the thousands, maybe even 3600. Check some old posts, maybe better pain relief would help ease some fatigue issue.
      Well glad to hear from you and have a nice couple of months with all the festivities at your home!
      Dawn Kevies mom

    • Anonymous
      May 13, 2008 at 2:29 pm


      Good luck with everything. I’m sorry you are not feeling well, I’m thinking about you.


    • Anonymous
      May 13, 2008 at 7:58 pm

      Glad to hear from you, Jodylynn — I have been wondering how you are doing. Hope you like the new doctor and that she gets you on the right treatment track!!! Keep us posted!