Not sure what foot to put foward (ha ha ha) – deciding on treatment

    • Anonymous
      June 8, 2010 at 4:42 pm

      This is my first post – I suspect I’m one of many shy sufferers who have learned much from these forums but feel a little guilty asking questions, but it just hit me today that this forum is all about questions and sharing! (Duh!) So here goes…

      I’m a 36 year old diagnosed in 2009 with CIDP after six months of illness – though I hadn’t felt “right” for years. At first I had extreme fatigue and weakness along with neuropathy symptoms that lasted for weeks and then went away. My neurologist diagnosed Lyme Disease, put me on three weeks of oral and then months of IV antibiotics. It seemed like I was getting better until I was hit with sudden and severe pain that started in my back and spread.

      Though I am still mobile, I suffer severe and constant pain, for which I have to take the usual litany of pain meds. I have episodes of extreme weakness that come and go. I get the twitches all over, tremor in my hands, cramps in my hands and feet, and fatigue/sleepiness so intense that I fall asleep at my desk and have to sleep all weekend. Like most of you, my life has been stolen by this illness, but I thank God I can still walk at all.

      I have had seven months of IVIG, which have had little impact on my condition. We tried high dose intravenous steroids, which greatly reduced the pain, but only while the meds were in my system. My neurologist refuses to give me Prednisone because of the side effects – I have already gained weight since getting ill, which has exacerbated my apnea.

      I went for a “second opinion” a few months back with a famous doctor here in New York, who ended up giving me the brush-off, if you can believe it.

      I know that at this point many move on to plasmapheresis, and this is what my neuro has recommended, and I already have met with my hematologist to undertake this next step. But something in my gut is stopping me from wanting to go ahead with it. I’m not sure why because from what I have read here on the forums and in my books, it is fairly safe. It bothers me that my doctors talk about all this as a “trial and error process,” and I am hesitant to go ahead with something so invasive and have it turn out like the IVIG: months of waiting for a response, missing lots of work, going further into debt, never knowing whether I am getting somewhere.

      Perhaps I am afraid or just exhausted (living in NYC makes every doctor’s visit or trip to treatment ten times as difficult… so many subway stairs!), but I do not want to go forward with this and am wondering if I should seek yet another opinion. My family is in North Carolina, and I am considering trying Duke Medical Center’s Neurology Department, which has a pain clinic and it looks like they are doing trials on difficult conditions.

      So what I would like is a little advice from some of you seasoned patients – how many 2nd, 3rd, 4th opinions did you get before starting aggressive treatment? Did your decision to go ahead with treatments rely solely on your own judgment, or did your doctor’s give you the confidence that they had a good chance for success (as mine obviously haven’t!)? Also, if anyone happens to be a patient at Duke, if you would be willing to private message me about your experience there, I would appreciate it.

      Thanks so much for taking the time to read this unintentionally long post, but I guess this serves as a bit of an introduction. I feel so much warmth and love when I come here, and I appreciate the time each of you take in your posting. I look forward to being a part of your community and hope I can help in some way. If any of you live in NYC, I would love to be invited to a support group!


    • June 8, 2010 at 6:56 pm

      I would strongly suggest getting to a specialist at an educational facility like Duke. I have been to 2 different specialist, both of which my own Neurolgist recommended. She wanted to make sure nothing was missed and also gain guidance on treatment schedules, different combinations of medicines and have an expert to consult (usually via email) with questions.
      For me it was an interesting experience. I went to University of Chicago and spent 5 hours being tested and discussing my situation with an entire team of doctors, then they met and came to a conclusion on my true diagnosis and treatment plan. They were incredibily thorough and were in no rush because they didn’t need to see some sort of patient quota. They also see far more cases of CIDP/GBS than my Neuro so they have insight you just can get from a single doctors office.
      I am once again going to a University Specialist next month as we begin looking at a different treatment option. My neuro is more comfortable bouncing ideas off the specialist so I don’t mind a few more hours of probing and probably another EMG test (Just hope I don’t have to do a third spinal tap, I don’t like those).
      I sure can not imagine having to seek treatment in a huge city like NY, that would “break me”. I am able to work 1/2 a day, then drive 5 minutes to the infusion center and get treated and home by 5pm usually. Unlike you the IVIG is a life saver and I respond almost immediatly after getting 5 straight days of it. Thinking back I know there was a time when it did not help very much, this was because I only received 3 days and the time between treatments was too long.
      A specialist can help set a plan that will get you back on track, provided you can get your insurance to cover it.
      Best of luck and I hope you can get things turned around, it shouldn’t be this hard on you.

    • Anonymous
      June 8, 2010 at 7:21 pm

      Thanks so much for responding and for confirming what my gut is telling me to do. When you live in a place like NYC, you always think you have access to the best of the best, but then I never feel like I’m getting that, at least where healthcare is concerned (food – now that’s another matter!) It sounds like your experience is what I’m hoping for in a place where you meet with a team of doctors at once or at least in the same day. If they then decide plasmapheresis, then so be at, and I’ll come back here to continue. Definitely not looking forward to more EMGs, but you’re right – the worst is the spinal tap. I had a botched one where the neuro couldn’t find my spine after refusing to believe me when I told him I have scoliosis. From now on I demand xray guided!
      I guess it will all seem easier once you get a routine worked out, and you know you’re on the right track. Maybe getting through all this uncertainty is the hardest part.

    • Anonymous
      June 8, 2010 at 11:35 pm

      Check your inbox, I’d sent you a couple of PM’s regarding your post. Hope your day was good.
      – M

    • Anonymous
      June 9, 2010 at 11:20 am


      Who did you see at U of C? Dr. Arnoson? I saw Drs. Soliven and Rezania. They are very thorough and take their time, I agree with that. I decided to switch to Northwestern though since it was taking me a lot of time and money to go down to U of C. They basically told me that they did not know why I was having the symptoms that I was having and to come back in a few months, so I wanted another opinion. Just curious if you dealt with different neuros at U of C. Thanks.

    • June 9, 2010 at 11:53 am

      Jessica H. Check your private messages for response.