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    • #18533
      Peter Powell

      Hi, I’ve been on Imoglobin infusions for about 12 months now, every two weeks.  I asked my neurologist to stop these as the day of the infusion and the following day were extremely tiring with no noticeable change in my symptoms.  However I am now experiencing an increased weakness in my muscles. So, wondering if the infusions did help?

      so, my query is, do many PALS have infusions as part of their treatment?

      keen to hear of others experiences?

    • #18540
      Carolyn Barry

      Peter, this sounds somewhat similar to what I have been experiencing with my Radacava infusions.  I started them in December, and I’m feeling much more tired than ever before.  I can’t say that it is only during the 10 days of my treatment, as it’s how I feel all the time now.  I talked to the doctor at the clinic I go to for my infusions, and he said that there are several factors that are causing my tiredness, in addition to the Radacava.  He said having ALS alone could be a reason, as well as the Neuropathy in my feet and legs.  So I’m not sure which of these things is causing the tiredness the most.  Having my infusions 20 days each month has been incredibly draining in many ways, which has caused me to realize that I may reach a point where it’s time to stop these treatments.  While I’m glad I’m not experiencing pain from my infusions, I find that exhaustion each day is very difficult to live with.

    • #18541
      Carolyn Barry

      I also meant to add that my balance and weakness in my legs seems to be a bit worse, though it could be due to problems with my left foot.  I don’t know where the cause of this is, as again, there are several factors involved.

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