Saw neuro again

    • Anonymous
      September 25, 2008 at 9:02 pm

      So i saw my neuro again.

      Quick preview of before this meeting. This is my 3rd neuro, the first 2 were from 7-10 years ago said that nothing was wrong with me, the newest one believes that I have CIDP. I have also seen a bunch of other Dr’s all but one said my symptoms were in my head. I started seeing the newest neuro abt 2 months after my last bout of not being able to walk. It was the earliest that anyone could fit me in. I never tested positive for anything (blood, EMG, LP) that would convince the insurance co that I had CIDP (for IVIg) although I did refuse the sureal nerve biopsy as even the neuro said that it had a strong possibility of coming back negative due to the # of years I had whatever I had. The neuro wouldn’t ask the insurance co if I could have IVIg. Instead, 6 weeks after I met with him, he put me on Pred for 4 weeks. After being on Pre for 4 weeks, his concluded at that time was that the steroids weren’t helping. He wanted to let them go longer to be sure…and didn’t have me return until I had been on them for ~ 4 months.

      This meeting. The neuro again said that the steroids did not help. He said that I should have been basically back to normal now if they were as a person sees the drastic improvements at 4-6 weeks. I am now wondering why he kept me on them for so long if he expected such a fast drastic improvement. I questioned the speed of recovery he mentioned by asking if it took a while to remyelinate after a bout of CIDP. He told me no, it is quick. He then fumbled with words, as he alway does when I ask questions, but then to back up what he said to me he gave me the story that GBS patients go from ventilator to walking in 4 weeks. A few studies I have read said that pred takes longer to work then what he says and the effects are not drastic in the timeframe as he says. He then gave me his strength test. When I saw him in April, he pushed kind of hard on me on my various muscle groups. In June, he pushed hard enough against me for him to grunt (I had gotten stronger). This time, he barely pushed on me. All 3 times he said I had barely improved from the previous time. My arm and leg muscles have gained strength over the months ,(I couldn’t walk in March but now I can walk a few miles). He seems surprised that my wrists/hands are still weak and so are my ankles/feet. Wouldn’t those be the last places to recover? He wants to taper off the pred. His recommendation is 50 mgs per week (I am on 250 mg/week). Although he says that if I wanted, or needed to, I could just quit it without tapering….OR I could take 100 mgs next week, 100 mgs the following week and then no more. I am wondering since when did Dr’s quit tapering off pred? He is still pushing the nerve biopsy. He says the insurance co won’t approve the IVIg unless he can prove something. I say no. THEN, he says let’s try a trial period of IVIg and see if the insurance co will pay for that. Low and behold, they agreed immediately. The problem is that he ordered 1mg/kg 2 days in a row…and then just once a month for 3 more months (don’t know dosage but it might be 1mg/kg). So I have to wonder if it is worthwhile to try it. I don’t know if you’d say I am in remission, but I am slowly, ever so slowly improving. Would that fact make a difference in the quant recieved? If I were in remission could a smaller dose still be helpful?
      Lastly, he doesn’t want to see me for another 4 months until the IVIg is done. Although his last statement to me was: if you get worse in the spring (I always get weak in the spring and no other times of the year)…call me and will have to do more testing. I feel like I have been sent out to dry AGAIN.
      I’d ask my neuro questions, but I can rarely get a direct answer. And, he’s not the kind of Dr that one can give suggestions to.

    • Anonymous
      September 25, 2008 at 10:19 pm

      How frustrating!

      It seems to me that this neuro is full of himself & not up to date on treatments.

      1st off – it is EXTREMELY dangerous to just quit prednisone. You must taper off of it slowly. Going from 250 mg a week to 50 mg doesn’t seem slow enough to me. I don’t have a lot of experience with steroids but I’m sure someone else will reply who does.

      IVIG really doesn’t have it’s full effect unless it is given in the correct dosage in the correct time frame. I’m assuming your rx was written for 1 gram per kg for 2 consecutive days once a month. Honestly, I don’t think that’s really going to help.

      My advice would be to print up some articles on the efficacy of IVIG with CIDP & the correct dosages, 2g per kg loading dose then 1g per kg maintenance dose. I would print up some articles about the amount of time between infusions – some people need to have them weekly or bi-weekly while other can last a full month. Add in the info about IVIG’s half life only being around 21 days then fax all of the info to him. Just write a short note saying you were doing some research on IVIG and you would really like to try a more aggressive approach since this is a trial period for the insurance company. Tell him you want to make sure you are being as aggressive as possible.

      I had to learn the hard way that sometimes you really need to stick up for yourself to dr’s & let them know that you are your own advocate. I had to let Emily’s dr know that I was educating myself on CIDP & once he realized that he became more receptive to me.

      If you can’t get anywhere with this dr then try to find another neurologist who knows about CIDP. I know it’s frustrating to have to keep hunting for a dr but it is the best thing you can do for yourself if you can’t get through to this neuro. Also, I think anytime you feel like you can’t speak with your dr candidly it’s not a good thing. You should never feel like you can’t make suggestions to your dr. Dr’s are supposed to worth WITH their patients – not be dictators.

      It sounds like you have improved some if you are able to walk again. So that is a good thing.

      Good luck,

    • Anonymous
      September 25, 2008 at 11:33 pm

      🙂 Hi Kristen:

      Sorry to hear you are still struggling…. I was wondering if he checked you for reflexes and those vibration tests etc…, to help make some determinations….
      What if any course of action would he think be prudent, if not ivig/pred…
      I think with some doctors you are really not going to get anywhere with making suggestions… Don’t know if its vanity, or superiority complex.. On the other hand, most I’ve met are really good, and open to any and all concerns/suggestions..

      Hope the ivig works…..Deano

    • Anonymous
      September 26, 2008 at 4:08 am

      Hi Kristen,
      I also was wondering how your reflexes, balance, etc were. Did you have a nerve conduction velocity test done? I have CIDP, the sensory part being the worse affected and I have absent reflexes among other things. My nerve conduction tests (past 3 years) have had absent F waves, absent sensory nerve responses and slowed nerve conduction in some nerves (the speed varies usually from year to year, but the absent F waves and absent sensory nerve responses are always the same.
      During my first attack 5/6 years ago I can remember having an EMG done and was told by the Doc it was okay, though I couldn’t even feel the needles go into my legs and I was too weak to walk! Then a few years later I had a nerve conduction test done and it was abnormal but the strange thing is by then I was stronger and able to walk! So, I don’t understand that!
      Good luck,

    • Anonymous
      September 26, 2008 at 8:30 am

      1st off – it is EXTREMELY dangerous to just quit prednisone. You must taper off of it slowly. Going from 250 mg a week to 50 mg doesn’t seem slow enough to me. ….

      IVIG really doesn’t have it’s full effect unless it is given in the correct dosage in the correct time frame. …

      Tell him you want to make sure you are being as aggressive as possible….

      I had to learn the hard way that sometimes you really need to stick up for yourself to dr’s & let them know that you are your own advocate….

      If you can’t get anywhere with this dr then try to find another neurologist who knows about CIDP….
      Good luck,

      I see my endo today and I’ll see what he thinks abt the pred taper. The neuros comments were just one more thing for me to question him on the whole.
      The neuro knows that I am proactive, and have educated myself on the disease, and I wonder if between that and not doing his recommended nerve biopsy, it just puts him off. I am quite vocal what I want, it is my life, but in my experiences in the past 13 years…few Drs want to hear what I think or feel….they either prescribed antidepressents or else just dismissed me. Look where their great medical advice has gotten me now. Funny though that I am the one that figured out I was hypothyroid, finally found someone to listen and treat me…and almost all my problems disappeared. I actually have a better track record for treating myself. I have a few other things I am thinking about too with respect to my health after hearing people talk on this forum about their experiences.
      This Dr has experience in ALS, GBS and CIDP plus I know he worked with another well known CIDP Dr, so I was hoping that he’d be fine for me.

      Kazza, Dean:
      I have had EMG’s, nerve cond., reflex/vibration tests. EMG and nerve tests came back inconclusive for demyelination. I have no reflexes.
      I have all the classic symptoms for CIDP plus the cyclical nature of recovering between episodes. My balance, which I basically lost in the spring, has been returning all summer.

      Yes I have improved slowly, and I hope it continues. I should have said also, in case anyone was wondering…I improved a lot before I started the Pred. Before pred I went from not being able to walk to walking with a cane and holding someones arm. Since on pred I can walk by myself with cane and on surfaces that I am comfortable that I won’t fall…I don’t need the cane. I am praying that my recovery continues. I am trying to decide if the little IVIg is worth it.
      I’ll see what the endo says, maybe he’d know someone for a recommendation.
      Thanks for listening

    • Anonymous
      September 26, 2008 at 8:55 am

      That kind of bull makes you wonder why some dr’s even went to medical school in the 1st place. I get so fired up & angry when I hear about dr’s treating patients the way you have been treated.

      I’m really sorry you’ve had such jerks for dr’s. Here’s hoping the endo will know another GOOD dr you can see.


    • Anonymous
      September 26, 2008 at 10:27 am


      I understand your frustration and skepticism with our medical practicing brothers and sisters… It was about one year ago this week I started having difficulties with walking, numbness, etc… I went thru three doctors that misdiagnosed and treated me for lymes (sp).. I feel had things been taken a little more in depth, my gbs could have been averted… As things happenned, I think the misdiagnosed treatments/prescriptions probably accelerated my gbs, and hence the fix I’m in now..:mad: