PAIN and feeling neglected by Neuro

    • Anonymous
      July 25, 2007 at 8:53 am

      Its been a while since my last post, now being a stay at home Dad. I have been on a 90 day cycle of Prednisone @ 60mgs per day and its been very rough. I have chronic nerve and muscle pain that my Neuro has treated with narcs for the last two plus years. I have decreased my pain meds from 3 different types to just one and I have been taking it as directed and I am out of meds as of yesterday. I called my Neuro monday morning and they have yet to call back or call in a script. What do I do??? I am applying for SSDI and have an Eval on Monday but if I don’t get my meds (endocet 10/325) I am unable to function. To add to this problem I don’t have insurance coverage until mid August so even when/if they do call in my script I’ll pay an arm and a leg.
      It seems that since I wasn’t able to go with IVIG because of my ins coverage I was given the cheapest treatment and then ignored. Am I just over reacting
      Any advice??

      Michael – Greensboro

    • July 25, 2007 at 10:10 am

      What is the reason insurance will not pay? We also had an issue in the beginning after our first treatment. The doctor had to write a letter of neccesity, as well he had the foresight to include that he felt steroids were not an option (I was opposed to them being that Kevin is 10, still growing, and not through puberty) He knew that the insurance company was probably giving us slack because of the money and he was hastening the procedure by beating them to the punch and including why ivig was necessary and steroids were not an option.

      Is it possible to ask your doctor why insurance will not pay? Has the insurance told you the reason? Once you are on ss, is it possible to be on aid to see if you could get ivig through the state? How long do you have this insurance for? Is it under your wife or your old job? I have no experience or knowledge with how all the insurance stuff works re ss,and aid, just some thoughts. One thing I do have experience in is screaming to get things for Kevin! You would be surprised how well it works! I am so sorry that you have to go through this hassle to get what you need! I wish I could help you!

      What abo9ut samples, could you explain the $ situation to the doctor and ask him if he could set you up with samples? If not the neuro, maybe your gp? My mom does it all the time with her gp, and my father in-law as well. He gets Lyrica samples from his gp even though it is his neuro that prescribes it. I will pray that God gives you stregnth to deal with all of this insurance stuff and keeps you strong for all of the dad stuff you are doing! You are a wonderful man to be taking on such a huge duty! My husband would NEVER be able to do it! You are a great dad and husband for keeping it all together.

      Best wishes,
      Dawn Kevies mom 😮

    • Anonymous
      July 25, 2007 at 11:50 am

      Michael, You are Not overreacting! Keep that wheel squeaking until you get the oil you need!!! Call ppa for med assistance-that is what they are there for. Narcs don’t do as well for nerve pain as Neurontin or Lyrica does. Neurontin is the less expensive one. You can’t let the pain grab hold, you don’t need the increased stress of it. Sit down and call your neuro right now!! stay on the line until they call the script in! or go the pharmacy route-the pharmacist will call your dr for a refill, if there are no refills left on your last script, wait at the pharmacy until they fill it-they don’t like to make their customers wait especially if they are in pain! Keep up the fight, you will get through this rough patch into smoother waters. Hugs!

    • Anonymous
      July 25, 2007 at 3:28 pm


      Hello again, I hope you received my message sent back to you today.
      I’d do what Cheryl said to do…keep calling your doctor until you get the
      meds. If you have to call 10 times in one day…then do so.

      Prednisone is only an immunosuppressant, it won’t curtail pain. I don’t have
      any pain, so I don’t know what you should try.

      You can also look up Baxter pharm. and see if you can qualify for a price
      reduction on the IVIG. They have a program to assist.

      Medicare recognizes CIDP and the use of IVIG, I’m surprised that the ins.
      co. refuses to honor it. However, sometimes they do try to balk at it.

      I do hope you reach your doctor…

      Miami Girl

    • Anonymous
      July 26, 2007 at 11:50 am

      [COLOR=”Blue”][SIZE=”4″]Michael, please contact these people. Patient Advocate Foundation- 1800-532-5274. The president of our foundation gave me the number and it was amazing how quickly they helped. They were able to get on the phone to the hospital in my city with me on the other line and get what I needed. Please call and let us know how it goes. and if you need further help, e-mail me.