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.
Laurel

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.
Laurel

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.
Laurel

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.
Laurel