How to approach neurologist

    • Anonymous
      October 30, 2007 at 10:31 pm

      I am seeking some advice about how to approach my husband’s neurologist concerning this issue. My husband is tentatively diagnosed with CIDP Lewis Sumner variant. He is 60 yrs. old, and was initially misdiagnosed with Carpal Tunnel Syndrome. He had unsuccessful surgery back in 2005, and his right hand is atrophied with little use. We did the big round of tests beginning July this year–MRI’s, EMG, nerve conduction studies, Athena sensory motor blood testing, lumbar puncture, etc. This diagnosing took place at our local Neuromuscular Disease Unit at a big city hospital in Canada. Hubby has had a total of nine days of IVIG with very good response. He has two days scheduled tomorrow and the next day, and then 2 days at the end of November. Then the neurologist will repeat the EMG and nerve testing. She has said at that time she is considering placing him on Imuran and Prednisolone. We asked why the switch from IVIG to those drugs–thinking that in part it would be the unwillingness of our medical system to cover the cost of the IVIG. She acknowledged that this is the case i.e. the government wants doctors here to move the patient onto cheaper drugs unless there is a specific reason not to do so.

      My husband is overweight by about 50 lbs., he has a history of depression and currently takes an antidepressant, and he has a history of kidney stones. I think he actually would be a poor candidate for steroids due his history of depression and his obesity as the steroids cause mood swings and weight gain. He restricts his calcium intake due to major kidney stone problems–has had stents in the past. And I gather that due to bone loss problems, usually people on steroids take calcium which I think would cause him difficulty. As a lay person, I think that since he is doing well on IVIG why should he be made to switch to a medication regime that make cause more problems.

      So I am wondering how those of you on the this forum would handle this situation. Am I being too negative about the possible switch to another medication regime based on government financial concerns? Has anyone dealt with a similar situation? Any Canadians with CIDP who have had to switch from IVIG to another med. regime because of government caps on IVIG? Thanks for any thoughts or advice.

    • Anonymous
      October 30, 2007 at 11:00 pm

      I am not in Canada but I have learned one thing over the years with dealing with my sons medical issues and now my CIDP. You must advocate for yourself or family member. Questions,questions,questions, You take with you all theinformation you just gave us and go online and find and print any negative aspects of the drugs they want to put your husband on and speak very frankly of your concerns. This is the only way to get things done the way you need them done. Doctors at times put themselves on pedistals to the point that they almost believe they are God. They are in a practice and are not perfect and this is a very rare disease that not alot of them understand. I always have my own facts and questions together before I go to the doctor and ask the questions that they do not seem to to want to answer and if you do not understand something they tell you make them go over it until you do. Good Luck

    • Anonymous
      October 30, 2007 at 11:19 pm

      Thanks Jody. I will get busy and do as you success. I will google like crazy and try to be well prepared when we go back to the neurologist.

    • Anonymous
      October 30, 2007 at 11:26 pm


      I’m not in Canada either, but Jody is right…ask, nicely, that since he seems
      to do alright with the IVIG, let him stay on it. The prednisone will shut his
      immune system down, he will most likely have the side effects of weight gain
      and possible mood swings…you are correct. He may do well with the meds,
      but if he doesn’t, I’d make sure that the doctor will definitely switch back
      to the IVIG – even if it has to be written and signed by the doctor.

      If necessary, call your insurance and ask them, if it doesn’t work (the meds)
      would they resume in covering the IVIG, upon the doctor’s request.

      Good luck

      Miami Girl

    • Anonymous
      October 31, 2007 at 1:28 am

      Hi Miami Girl,
      We have a bit of a different medical system here. Everyone is covered by a provincial (like a state) medical plan, and in that plan is a government pharmacare plan which covers the IVIG. The provincial government sets forth which drugs are covered and for how long. The provincial government decides which illnesses are appropriate to be treated with IVIG, and then they set parameters for how much can be given and for how long. Then they strongly encourage the prescribing doctor to go with cheaper alternatives. If the doctor decides that there are reasons not to take the patient off the medication in question, he/she has to provide concrete data/rationale why the patient needs to stay on the particular medication. I think what I need to try to research is evidence that IVIG is more effective or safer over the long term, or perhaps that patients that are obese, have a mood disorder, or have a history of kidney stones aren’t good candidates. Doctors here do get a fair bit of pressure to limit the use of very expensive drugs like IVIG if there is evidence that things like Imuran and Prednisolone are equally as effective. But I guess I am really questioning that supposition. It seems to me that over the long term Imuran and Prednisolone have very bad effects on the body versus the blood product hazards of giving IVIG. I do think we have to prepared to present a case why my husband should stay on IVIG that has sufficient good reasoning to satisfy the government honchos. So if anyone has some good references to support IVIG versus steroids and Imuran I would appreciate the sites.

    • Anonymous
      October 31, 2007 at 2:33 am


      How sad about the governments take in the medical care. Unfortunately then
      your husband may have to take the meds…IVIG works very well with some of
      the forum posters, whereas, others do quite well with prednisone or other
      types of meds or even PP. It depends on the patient and in what stage they
      are in…not everyone has the same variants.

      Personally, I tried prednisone and cellcept, but reacted badly – so I’m on the
      IVIG again, without any problems…for 11 years, actually. It took only three
      months to find out that the pills were causing me to have too many side

      I do hope that the meds work out for your husband, because the IVIG is
      expensive, but it does work for some.

      Maybe someone from the forum can help you more…

      Good luck and I hope that your husband gets good care.

      Miami Girl

    • October 31, 2007 at 7:12 am

      I also have Lewis Sumner variant, my neuro told me that the solu-medrol IV treatments {steriods} usually didn’t work as well as the IVIg on that form of CIDP. I’ve done both and it’s true in my case. I’ve an appointment with him so can ask if he knows where there is some kind of info to back that up. If he can come up with anything I’ll let you know.

    • Anonymous
      October 31, 2007 at 10:43 am

      I would appreciate you asking your neurologist. We have until December 7th which is our next appointment with his neurologist. Hubby is going in this morning for IVIG, and if one of the friendly chatty nurses is on shift I will try to get some info. from her about any possible loopholes in approaching the government on this issue. I know that there are some CIDP patients who attend the day care for IVIG who have been on it at least 18 months–so they must have met the criteria somehow. I think since hubby is doing well on IVIG it would be hard on him to switch meds. and then have a relapse or bad side effects. He tends to be very sensitive to meds.

    • October 31, 2007 at 11:17 am

      Hi Laurel,
      Member Sue Waters is in Canada and has received ivig. Try a pm to her and maybe she can help.
      Dawn Kevies mom

    • Anonymous
      October 31, 2007 at 12:54 pm


      I will pm you some names of liaisons you could contact in Canada.

      With regard to the IVIg, at a chapter meeting this weekend a specialist was saying that if IVIg is giving good results, basically, dont mess with it (not quite in those words). However when a patient doesnt respond to IVIg then you move on to other treatements such as sterroids etc because that variant may respond to a different treatment better – Just as everyone else has said. A gentleman asked if he should try another treatment even though he is maintaining on IVIg, the doc said that if he is doing well and maintaining with the IVIg, he should stay with it.

    • Anonymous
      October 31, 2007 at 1:11 pm


      I live in B.C. I know my doctor was concerned about getting a solid diagnois before putting me on IVIG. I had several tests done to prove that I had CIDP. You mentioned that your hubby is tentatively diagnosed with CIDP Lewis Sumner variant. Find out if this is indeed what he has or are the doctors still unsure and want to try other options? Talk to your neuro about your concerns about steroids. We have one of the best health care systems and with solid documentation there should not be a problem getting IVIG.

      I am getting IVIG with good results and also take Gabapentin for pain.
      If you want to talk let me know and I’ll happily chat with you.
      There are several others in Vancouver that post here as well.

      Be in control or your own health care…be a person not a number!

    • Anonymous
      October 31, 2007 at 8:37 pm

      considering that you husband is sensitive to alot of meds use that and also steroids can cause weight gain so if your husband is already overweight then healthwise that would not be good another thing to use to your advantage also the fact that he is handling the IVIG very well that is another advantage. Talk wit the neurologist about all of these andthe info you pull together and maybe that will be enough for him to tell your government medical that it is unwise at this point to tae him off the IVIG. I am glad you will go in well prepared. Also just so that you don’t miss anything write yourself a list and go through everything with him and take notes so that you remember every answer he gave. My problem is going to my doctor with a lit in my head and then leaving and realizing I forgot to ask about 1 or more things, sometmes I am just not in my right mind. LOL Also it is alot of info to remember at such a stressful time. Good Luck to you and your husband I will keep you in my thought and prayers.

    • Anonymous
      November 1, 2007 at 9:40 pm

      Hi Rhonda,

      Concerning my husband’s tentative diagnosis of CIDP Lewis Sumner variant. He was followed by another neurologist for several years, and it just in July this year that he was referred to the Neuromuscular Disease Unit. Under the care of the first neurologist he had the surgery for the misdiagnosis of Carpal Tunnel and had the surgery. He kept losing more function in that arm and hand, and then got referred on. I think the current neurologist wants a little more time to assess his response to IVIG, and to repeat all the nerve conduction studies in December before a firm diagnosis. At the last visit a couple of weeks ago, the quote was “I think this is Lewis Sumner”. Along the way I was worried sick that he had ALS. The neurologist on the last visit said, “I do not think this is ALS”. But obviously these conditions can be really hard to diagnose definitely.

      Concerning the nerve conduction studies he had, I will quote. “Abnormal Study. There is electrophysical evidence for a generalized sensory motor polyneruopathy. This is multifocal in nature. The right median motor nerves are most severely affected with significant changes are seen in the right ulnar nerve as well. There are suggestions that there is demyelination. Conduction velocities do not fall in the demyelinating range although they are approaching the demyelinating range with conduction velocities at 40 metres per second in the upper limb and several nerves (strictly speaking cutoff would be 37.5 metres per second). However, there is a hint of temporal dispersion and a number of nerves show possible conduction block including the left median, right peroneal motor nerves. Looking at the wave forms there is a hint of temporal dispersion and the right tibial F-response is prolonged and right peroneal F-responses are absent. There is obviously also axonal involvement with active denervation seen in the right first doral interosseous and flexor carpi ulnaris muscles. The pattern was interesting with obvious multifocal involvement. Clinically, symptoms are almost purely confined to the right distal arm and been so since 2000. However, he does have some weakness of finer spreaders on the left and the electrophysiologic findings both on the nerve conduction studies and today on his EMG study, for example vastus lateralis anterior, are more widespread suggesting that there is an underlying process here. Clinically, this is predominantly a motor process with severe wasting and weakness of the distal right arm and hand although there is definite sensory involvement both clinically and electrophysicologically although this is overshadowed by the motor component.

      I am trying to slowly learn what all of that means. But I confess a lot is going over my head. So if you can interpret, please jump in. Thanks to all who have offered advice and help. I’m still trying to figure out how to reply to the private emails without copying and pasting . I’m a little tired as hubby just completed two days of IVIG and those days are long commuting days for us. But once again thanks for the support everyone.