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August 25, 2020 at 9:50 am
I believe I may be at elevated risk due to my CIDP-caused breathing respiratory problems as well as my ongoing chronic CIDP condition. I am wondering whether CIDP patients on SCIG IgG (like myself) have a higher than average protection against covid-19 due to the infusions. (IgG provides the majority of antibody-based immunity against invading pathogens). I decided to add this COVID-19 webpage to CIDPlog about how I am coping with the added burden of Covid-19 coronavirus on CIDP.
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August 14, 2018 at 11:27 amGreg – I have multifocal sensory-motor CIDP, but by far predominantly sensory and had a very similar experience as you on diagnosis. My original highly qualified neurologist actually reported that I was pretty much faking it! However, to my knowledge sensory dominant CIDP is not that uncommon but in my experience even the well qualified CIDP specialists do not understand how debilitating it feels! I have posted on the website CIDPlog the following –
Sensory vs Motor Response- Early on in my case it was found that many of my symptoms were largely “sensory” [as opposed to motor] but all the same VERY real and debilitating to me. Sensory nerves reach the brain and motor nerves the muscle. The fasciculations are clearly visible in say the calf and appear like muscle bubbling / boiling-water or wave-like-twitching: You can feel and clearly see the muscles bubbling (often with a painful twitch) but there is also an (invisible) “wave” and/or “vibration” / buzzing sensation (in the individual muscles and even throughout your body). Doctors say I do not have an ataxic gait but I feel I wobble like a drunk! I struggle to stand for fear of toppling-over but to an outside observer appear quite steady and normal. Apparently sensory symptoms are ONLY felt by me and seemingly cannot be visibly observed by others (and only discovered with appropriate nerve conduction studies). Even though my CIDP is very sensory-dominant, it does seem that in 2015 my sensory response is “progressing” into more motor response over time. My strength loss is not yet serious but my intermittent stumbling (caused by sudden loss-of-control and perhaps temporary muscle weakness) is always a threat. Importantly, my strength loss has not been observable to me – I can still “run” a slow 10k and measurements on my arms show about a 15% loss in strength by 2018 compared to early 2015.
CIDPlog.comAugust 14, 2018 at 10:54 amEdayle – I assume your testosterone therapy was with the concurrence of your doctor (?) – I am surprized this would be recommended given your normal testosterone levels? That dose is pretty too but with encouraging results so it is really too bad there is not more research being done in its use for GBS and CIDP. I hope you continue to post the impact of this treatment including what happens with your testosterone level.
My trial with testosterone was less dramatic but certainly positive on my tolerance of my CIDP symptoms. I am now in a quandary though as I have a slight risk of prostate cancer (I had one needle precancerous out of 13 in a prostate biopsy) and testosterone therapy can increase that risk. My testosterone was originally virtually non-existence so I was prescribed Androgel but was taken off the testosterone because of this risk. I am now completely deficient in testosterone and my CIDP remains pretty challenging but at least stable with IVIG. I and my doctors are going to re-assess the testosterone though and by year end 2018 I may give it another try.
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May 24, 2018 at 10:49 pmDino –
There is no post on this testosterone subject for eight years. May I ask for an update. Was any new research done and what is the latest scientific opinion on the use of testosterone supplements for GBS-CIDP patients. I have been diagnosed with CIDP since 2011 and have extremely low testosterone at age 72 now. I went off the testosterone but now wonder if I should continue. I am having IVIG every four weeks and expect this to continue indefinitely.
Thanks
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