IVIg after nearly 15 years of my PDN/MGUS neuropathy.

    • Anonymous
      March 2, 2008 at 12:25 pm

      I posted this on the UK site last week but I have updated it slightly:
      Have been posting on this forum for several years. I’ve been in the midst of an exhausting battle with pain in my feet. For several years of my PDN/IgA – CIDP associated but especially the past 18 months has seen the pain in the muscles/tendons etcetera multiplying. My feet were NEVER at rest or relaxed. Everything cramped all the time and I cannot lie down normally, although that has been true to a lesser extent for years. Clearly the messages to do so were not getting through.
      A few weeks ago my neurologist at Leeds (there was no neurologist here in Halifax UK 15 years ago and over time I found my way to Leeds) raised the issue of trying IVIG. This after 12 years with him. Yes, they were not sure way back about the problems/risks of any treatment for my IgA PDN. I was fortunate for years and gabapentin for nerve pain did the business and we have had some good holidays in Norway, Sweden and the North German Harz Mountains area.
      Increasingly the use of the gabapentin has been like pouring a cup of water on a major warehouse fire.
      I initially demurred about the IVIG after so many years but then he told me about an idiopathic axonal neuropathy (diagnosed at Queen’s Square, London years ago) sufferer with lots of pain who suddenly presented with GBS. The IVIG dealt with the GBS and greatly helped with the other pain. My neuro says now there is much more experience with IVIG and lessons are learned in various ways.
      My prevarication for weeks did not help me. Cutting a long story short he applied to the local IVIG panel (under the national IVIG demand management scheme) and in days I was called 13 days ago to a vacant bed that afternoon on the Neurology Ward at Leeds GI.
      Had the 5 successive days on the infusion pump averaging 5 hours per day. As over many weeks I had become so tired by such severe pain to the point of near exhaustion I needed to pray for endurance.

      IVIg is of course more usually given fairly early in a disorder but way back my neuropathy was thought to be relatively mild but slowly progressive.
      If anyone is curious enough and to save me time please go to
      . I thought things were quite tough then in late 2004. In the past 3 years progress quickened and in the past 8-9 months more so until it was galloping. What I describe on that page regarding tightening and cramping of the muscles then became so exhaustingly painful. An unexpected turn.
      The aim was not a pain cure tactic but is to try to repair the nerve damage that sends chaotic messages to the foot’s musculo-structural system.

      No immediate results apparent in hospital but it can take 3-4 weeks more for the immunoglobulin to kick in, if it is going to. We must wait to see. Days like the past 2 days’ weather here (pressure falls and high winds) are a test for the evidence. Endurance test. No significant change yet

    • Anonymous
      March 2, 2008 at 6:18 pm

      Keep on thinking positively!! I will pray that the IVIG will work wonders for you!! Let us know how you are doing…

    • Anonymous
      March 3, 2008 at 3:50 am

      Hi there, firstly all the best and will be awiating news of your progress.
      secondly, am interested to hear how you came about with this diagnoises. i guess you went down the normal diagnostic tests for GBS and CIDp, am always keen to hear how people get diagnosied and their symptoms etc.
      cheers and hang in there
      kia kaha
      stay strong

    • Anonymous
      March 3, 2008 at 4:14 am

      How did I come to get the PDN/MGUS associated neuropathy? Just now I am very tired as we have had 3 days of ultra high winds and pressure falls. These have always affected me from the start of my awareness in 1993 of something being wrong.
      The long story of my diagnosis is on my website and the page listed in my entry above. The weather effects are also described on the website which is also below as my signature.
      A light cover of snow this morning & gusting winds.
      A brief e-mail response from my neurologist – done at home late yesterday (Sunday) evening – has just come in responding to my mailed 1st week’s report after the IVIg.
      It is a bit difficult sitting here typing as my feet are hurting strongly! 😮