Stupid…Stupid…Stupid

    • Anonymous
      July 26, 2008 at 3:15 pm

      Count me in for being absolutely stupid. Please don’t duplicate my stupidity, although we all think about it.

      Three and a half years ago my CIDP reached the point to which I was approved for disability. The best part about disability is that you finally get a little income (and I do mean little). But the income you get puts you above the income level to qualify for medicaid. So I was out of health insurance for two years. Finally after the two year waiting period, medicare kicked in, and I got some level of coverage.

      In the meantime, I could not afford constant Dr. visits, and the higher priced meds. So I worked out a cheaper, generic regimen that dealt mainly with the pain. I passed on the three hour ride to my neuro (at a research university), and looked for one closer to home. I found one. He is not versed in CIDP, but I thought I could help him along and encourage him enough to get by. My symptoms were not worsening at a fast pace. Well, after six months he said he was not wanting to write my pain management perscriptions anymore, and I needed to go to a pain management clinic.

      The pain management clinic thought I had back pain (I did have successful back surgery six years ago, no pain). I told them it was CIDP, a demyelinating polyneuropathy. They kept my pain meds basically the same, but encouraged me to try to get off the medication I used for breakthrough pain. The next month I went to pain mgmt. I saw a different Dr. who asked me how my back was. I told him fine, that I had no back pain. He asked me why I was there if I didn’t have any back pain. I told him I had CIDP, a demyelinating polyneuropathy. He asked me why I didn’t talk about this before, and I said that I did talk about it the last time. After a discussion, he said that they didn’t handle that kind of pain management and I would have to see someone else.

      I called up my first neuro, the one who initially recommended me to the research university. We set up an appointment and had a good talk. He set me up with a pain mgmt group in a different county. They sent me some papers to fill out about my condition. I see them in a couple of weeks. In the meantime he said I should go back to the research university to be seen. I asked him if he would do treatment for me because I didn’t want the three hour drive(one way). He said he would assist the University neuro, but not lead my treatment, he just didn’t know enough.

      So….. Stupid…Stupid…Stupid….
      I tried to save a few bucks and cut some corners. It did no good. I am back to going where I was before, a long drive. The neuro is good, I don’t have a problem there, just a long, and now expensive drive. My pain management is all screwed up, my neuropathy treatment is all messed up, and I will be starting over.

      A word to the wise….. The school of hard knocks is a school of fools. Listen to people and do the smart thing. See a good neuro and stick with them.

      Dick S

    • Anonymous
      July 26, 2008 at 4:35 pm

      You know Dick, I had to really think about that last sentence of yours. You are right about the importance of seeing the right neuro but you sometimes have to see a few bad ones to realize who is good-doesn’t make you a fool, though-nothing wrong with trying to cut corners, who isn’t cutting corners on gas, food, generic drugs and so forth these days?

      And that very last line-how you play the cards-so you lost a few hands-sounds like you are holding a winning hand again!!! Glad you are back on track and getting the appropriate care you need. Maybe once you get what you need to be better maybe the neurologist can decrease your frequency of seeing him/her, thus reducing gas and other expenses. To get to the best, we have to justify the expense, move closer, or, as I do, juggle my budget around so that I can get what I need.

      Take care and hope you get back on that positive side of life soon. Emma

    • Anonymous
      July 26, 2008 at 6:03 pm

      Is there any way you can communicate with the neurologist over the phone or e-mail more and reserve going to see him for when you really need it? It could be mutually beneficial. You save the 6 hour round trip drive and the doctor has to deal with getting reimbursement from Medicaid less. Medicaid is notorious for flat out refusing claims and making doctors jump through hoops to get paid.

    • Anonymous
      July 27, 2008 at 6:04 am

      I was “farmed” out to a pain management clinic briefly. First thing they wanted me to do was pee in a cup. When the doc entered my patient room he was all like “tsk tsk” and thumping his fingers on my urine screen. He asked why is your urine positive for THC. I then asked him if he looked at any of the paper work I had just filled out in his office. I had wrote down in several places that I was using marijuana for pain control. He criticized me, then told me that under state law he can not write me a narcotic prescription. (not a state law, it is his office policy). He told me to come back in 30 days and then he would start me on methadone or maybe a long acting morphine.
      I honestly thought that a pain clinic would have a little more to offer outside of the box besides narcotics that will cause more side effects. Bottom line, I didn’t like being treated like a criminal. The only time I feel I should have to pee in a cup is if it is for a diagnostic test, not invading my privacy. I understand that the doc has to cover his butt, but the attitude of the office was “everyone here are drug seekers and abusers”.
      By the way, I hadn’t used the “herb” since i was a teenager until I was into my second year of coping with CIDP. 12 U.S. states already have laws in place to protect medicinal marijuana patients. I have discovered that baking with the herb rather than smoking it will provide up to about 8 hrs. of pain relief and I have greater mobility, better mood, etc…

      Not promoting, just sharing my experience!
      Peace,
      Flower

    • Anonymous
      July 27, 2008 at 6:07 am

      Dick,
      I’ve sort of been in the same position – my local neuro sent me to the university because he didn’t know enough. The agreement we came to is that once we get my treatment routine stable via the university (2.5 hours away) then the university doc will brief the local doc on my condition and treatment and then the local doc will use the university doc as a backup in case something weird happens. Since I get my IVIg treatments at home I don’t end up seeing the doctor all that often so the drive is less of a pain than it could have been. I feel your frustration, we sort of messed around locally for 14 months before going to Hopkins and haven’t regretted it since.
      Julie

    • Anonymous
      July 27, 2008 at 7:31 am

      I would like to voice support that what you did was not stupid at all. I work in a clinic for children with serious illnesses. On of the wisest things I have learned about this is that people/families have to come to peace with the fact that they make the best decisions that they can with the situation and information available at any point. It will tear you apart with guilt sometimes if you spend mental energy in “what if something else had been done” thinking. This actually applies for all people making these decisions including the people in health care. You made the best decisions you could with what “cards” you had to play. This is not stupid, it is practical. However, life changes and situations change. Now, your hand is different and the decisions need to be different. This is not that the previous ones were not right, just that they will not work optimally any longer. Everyone can learn from experiences without it being wrong or stupid to have taken one path in life. Sometimes there is a better way to proceed forward NOW.

      Neuropathic pain as occurs with GBS/CIDP is different than a lot of other kinds of pain and really should have a different approach to helping it. What is difficult about our illness is that it is really rare. It is a lot more common to have neuropathic pain due to peripheral neuropathy caused by diabetes or other reasons. May I suggest that you, as you did for your local doctor, you approach this new pain clinic with an attitude that there can and will be learning on both sides. If you can print out information from this site especially the sections on pain management that were written by doctors in the newsletters in the past (they are on line on this website) or information from the Neuropathy Association ([url]www.neuropathy.org[/url]) or articles. Some of the best advise you personally can find about pain management in GBS/CIDP came from Gene and you can search back through threads written by him for “to the point” advice. Neuropathic pain often is better with large doses (built up to) of Neurontin (gabapentin) or Lyrica. Some antiseizure medicines and antidepression medicines because they affect nerve function also are very beneficial, but because of the complexity of the nervous system and all the variability present in it, this disease, and people, not any one medicine will work in everyone. It may require trying one way and then modifying it to get the best pain control that can happen for you which needs to be good enough for you not to be in constant pain and to be able to live life forward.

      I say both of these only because I have found at work and personally since getting GBS the great wisdom of both of these–that you have to be at peace that you made the best decisions based on the information available at any point and that the path one has to take through life will sometimes require changing course (no matter how much you wish it were not so).

      WithHope for a cure of these diseases and a better way to live with them until then.

      I am editing this because I could not remember how to get to the articles. On the home page of GBS-CIDP, the link to the furtherest right has a place to look at previus articles in the Communicator newsletter. There are two articles that come up if you search for pain. The first was written by Gareth Parry, MD and titled “Pain in GBS”. The second was written by Kleopas Kleopa, MD and entitles “Disability after “Recover” from GBS”. The latter has the misfortune of having a typo so that the section on pain is labelled “Pale” instead of “Pain” so you can miss it if you skim read it. I did not realize that both only state GBS. From the home page of the Neuropathy Association (www.neuropathy.org) search for pain. Three other sources of information I have found useful about pain are the Cleveland clinic (www.clevelandclinicmeded.com/diseasemanagement/neurology/pneurology/pneuro.htm) and Mayo Clinic (www.mayoclinic.com/health/peripheral_neuropathy) and NIH (www.ninds.nih.gov/disorders/peripheralneuropathy). You can find these also if you Goggle search “peripheral neuropathy, pain”.

    • Anonymous
      July 27, 2008 at 10:00 am

      😀 Going to make you feel better! You just met a newbie that has been calling her self Miss Dumb Dumb! So now you can feel better about yourself meeting someone else in here by the name of Dumb Dumb!:D
      I too have done the same things in the past and boy does it get me everytime. And all I was trying to do was save a few dollars. I ended up somehow spending more! Now you met your soul mate match! LOL! Hope you get things straightened out and I wish you my best.
      I’m Linda and new and it’s a pleasure meeting someone that I can relate to! 😀

    • Anonymous
      July 27, 2008 at 11:53 am

      First off Dick, With Hope said it all. We all make decisions based ont he info we have. As we learn more, we make different decisions. There is no right or wrong, dumb or smart. Just decisions based on what we currently know. The same can be said to you Linda (And by the way, welcome to the forums). Don’t beat yourselves up. Learn from the past and move forward into the future.

      Take care.

    • Anonymous
      August 7, 2008 at 2:50 pm

      I go to pain management Dr. (the new one) tomorrow. I hope I can get a continuation until he can get info from my old (soon to be current again) neurologist. I hope the pain management people will be understanding and useful. I guess we will see.

      I will be trying to have a good attitude.

      They wanted to do a “block” and wrote that down before seeing me. Has anyone else had a “block”, and was it effective?

    • Anonymous
      August 8, 2008 at 1:19 am

      [QUOTE=Julie]Dick,
      I’ve sort of been in the same position – my local neuro sent me to the university because he didn’t know enough. The agreement we came to is that once we get my treatment routine stable via the university (2.5 hours away) then the university doc will brief the local doc on my condition and treatment and then the local doc will use the university doc as a backup in case something weird happens. Since I get my IVIg treatments at home I don’t end up seeing the doctor all that often so the drive is less of a pain than it could have been. I feel your frustration, we sort of messed around locally for 14 months before going to Hopkins and haven’t regretted it since.
      Julie[/QUOTE]
      Hi ,my husband will begoing to JohnsHopkins on Monday.He was diagnosed with chronic GBS and CIDP.In four months he went from working to a wheel chair.He suffered a seizure on fathers day.He seems to be getting worse by the minute.Is this disease fatal? Were you happy with JH? He is 53 and looks 93!!! I am scared .Most of his tests come back negative.He had late in life immunizations when he went to Hurricane Katrina.We also have a 2.5 hr drive .NJ.Thanks for listening!