Recently diagnosed

    • December 31, 2017 at 4:41 pm

      Hello. I’m new to these boards and live near Toronto, Canada. After a year-long series of walking difficulties, pain and numbness, I was finally diagnosed in September; had IVIG in November and December with additional infusions scheduled each month. My left foot is the worst, with nearly complete loss of sensation, no reflexes, and drop foot…broke it in September and now use an AFO. I also have considerable loss of sensation in my thighs, ankles, across my abdomen mid and lower back. I am still driving but have taken a break from work since mid October.

      I was hospitalized in December for two weeks due to loss of elimination. An MRI confirmed bulging discs in T 6/7 and T8/9, possibly causing the bladder retention. Although two Neurosurgeon’s have said it wasn’t a surgical fix, my Neurologist has suggested otherwise and has requested a third opinion at Toronto Western. It may take a year to get an appointment with this neurosurgeon, which concerns me, as I cannot imagine having to self-catheter for a year+.

      I have also been receiving PT since September which has helped considerably for a pinched nerve in my lower back.

      I am very lucky to live in Canada where so many treatment options are available and covered by our government healthcare plan.

      My questions:

      1. Are there any Canadian members in the GTA who have seen a neurosurgeon with CIDP experience.

      2. Does anyone know if PT could help with the bulging discs T 6/7 and 8/9? Perhaps traction as well as other PT treatments?

      3. My Neurologist has suggested switching to having at home, self-administered IVIg. I’m not sure about this option. Anyone have experience with this?

      Thanks so much in advance for your responses. I’m sure I’ll have more questions as time goes on.

    • April 13, 2018 at 9:46 am

      Hello Ann:
      I was referred to The Neuromuscular Clinic at Toronto General Hospital in October 2017.

      After all the tests, EMG,Lumbar Puncture etc., I was diagnosed with CIDP.

      I began IVIG with a 2 day loading dose in February 2018 and am now receiving a maintenance dose every 28 days.

      The Clinic specializes in CIDP. They know all about it.

      I understand that it is WAY TOO EARLY to tell but I believe I am having success with IVIG. Most of my sensory symptoms have gone or greatly lessened. I still have very crampy legs and feet but they are improving. Strength is getting better in legs, although they are constantly tight and occasionally buzzing.I have not had numbness from the waist down which previously I had.I work out at a gym every day and am even looking forward to golfing when the weather improves(?).

      I was diagnosed within 1 year of onset, so I hope it was caught in time.