I was not quite sure what but something was wrong with my muscle movement around year 2000 (at age 54 years) and actually had my first EMG (Electromyography and nerve conductive study) 2002: I was told I had Peripheral Neuropathy, nerve issues in extremities of limbs, caused by stress. However, five years later I became convinced that what was happening was not anything to do with stress nor normal aging. As it turns out I was right and the following is a timeline of my symptoms as I view them since then. Underlying all of the complaints is that they feel strange and impossible to understand. They are difficult to put into words so that a neurologist can understand them and even CIDP specialists do not comprehend some of the symptoms I have had. For example, the feeling (“sensory” response) that my whole body is vibrating and the muscles everywhere, including inside by eyes, my whole face and even brain, rolling like waves is totally beyond the reality of most. Only when the waves or muscle bubbling (twitch-like but not strictly twitching) became visible as "fasciculations" especially in the legs (a “motor response”) more than a year later did my neurologist start taking me seriously. Also by this stage I had already had a serious (almost total) loss of reflex in my knees.
My first nerve conduction study (NCS) October 8, 2002 (aged 56-years) was "pristine" albeit I reportedly had "very high amplitude sensory responses". I underwent this first NCS because I felt something was wrong including a left leg and foot that very occasionally would suddenly begin to drag. April 18, 2008 (aged 62-years), nerve conduction studies by my principal doctor were "suggestive of axonal neuropathy" and CIDP was mentioned but it was reported by the doctor that he did "not have great electrodiagnostic evidence of a primary demyelinating lesion". A second NCS opinion four months later, August 5, 2008, was suggestive of "sensory more than motor polyneuropathy of most likely a demyelinating nature" (but no conduction block was reported). Then almost two years later on May 05, 2010 my condition was revised by my principal doctor to "exceedingly mild CIDP". (In 2022 I am working on a project to have my NCS studied in more detail and will be posting the results on CIDPlog).
Although progression from my apparent onset of symptoms at around aged 55 to definitive diagnoses in 2011 aged 65-years took ten years, most of my significant new symptoms have the same pattern of coming on quite suddenly and unexpectedly .
Is my CIDP Eye-Centered: At first my mind and body struggles to overcome the mysterious new issue – and it can be traumatic. When my eyes (especially when closed or resting) went out of control March 2009 (with wild feeling of waves, vibration & tremor) it started over a weekend and remained severe for ten days: I felt like I could fall deeply into a psychotic stupor from which I would never recover. It took a week of fretting before I allowed myself to sleep accepting that I would be waking. When told of the complaint, my neurologists looked at me blankly and in complete disbelief! Eye fasciculations continue 2022 as a huge troubling symptom and since 2009 is has NEVER relaxing to close my eyes for rest. My eye issues seem very complicated as both peripheral and/or autonomic nerves could be the cause. I also have a whole-body vibration, muscle-bubbling feeling that began early and indeed I believe is a precursor to visible fasciculations and the beginning of the pain for me. (To be clear my fasciculations is NOT a muscle twitch) An important side-note is that my definitive CIDP diagnosis was championed by a Neuro-Ophthalmologist after other neurologists told me nothing was wrong for eight years!
My life-threatening breathing issue which began 2012 started and developed in a period of about two months although at first I could not believe that this was CIDP at work. Fortunately, the breathing issue subsided and is no longer a threat by January 2018. Importantly, it seems after a while my body adapts to the new symptom as per the saying "it gets worse before it gets better" - this is a noticeable short-term pattern that has emerged with most of my symptoms over the years living with CIDP, although this may be that I adjust and learn to cope with the new issue. I have found that the worsening of symptoms over the long term began in my legs and moved upwards through my arms shoulders and in the last year my neck and head.
Entering 2015 (aged 69-years) I have new challenges as the CIDP has moved upwards affecting my hands and arms - the progression seems rapid as usual but hopefully the new IVIG infusions will reverse this. Ending 2015 my condition does not seem to have improved and now continuous pain has become a big problem with seemingly no position helping to reduce it. My three leading complaints entering 2016 (aged 70 years) were major pain, more upper-body involvement, breathing issues and apparent autonomic "body control system" involvement (sweating, blood pressure, temperature, mood, digestion etc). While these issues persist, by April 2017 my body has definitely adjusted and I feel there is more stability with the effect of the maintenance IVIG and my ability to manage my CIDP symptoms (except unstoppable pain). My breathing issue has almost completely resolved but still now in 2018 (aged 72-years) and my CIDP doctors say nerve conduction studies show I am stable on the neuromuscular front but this is not allaying my fear that this is faulty. My number one issue by far is my increasing excruciating spreading pain. My neuro-pain seems not directly mitigated by the IVIG therapy and I am afraid of taking drugs for pain. My next ranked further issues are: fasciculations (which also exacerbate pain), rapid loss of ability to maintain ANY still position (including sitting), loss of balance and unsteadiness (loss of body and limb motion control). Also unresolved: extreme sensitivity to cold and sudden onset of dizziness/near fainting (even at rest). December 2018 NCS results show no change on the neuromuscular side. By early 2019 I have experience continued symptom spread through my shoulders, neck to head (with eye issues worsening). Following my adverse reaction to IgG mid-2020 I have taken a turn very much for the worst - I judge my overall health at less than 20% of the the pre-diagnosis level entering 2021, knowing I have very uncertain days ahead.
My Life-threatening CIDP 2021 a Decade gone and No-one Listening after IgG?: August 2021 I am becoming concerned and, after two visits to emergency for head, face, eye and weird brain issues I feel I have a life-threatening situation. I have been examined by more than ten doctors and I have even told my main doctors directly of my belief that my life is threatened. But the doctors do not seem to grasp the urgency of my situation (or more likely disagree with my assessment). I am even consulting doctors abroad: October 9, 2021 in Portugal on the advice of an excellent specialist in autoimmune diseases, I did comprehensive immune-system blood tests (Euro €1900). I also consulted a neurologist specializing in head issues including cerebral vascular diseases and neuroimmunology and had a head MRI (Euro €400) October 18, 2021. More at My CIDP Log after quitting IgG infusions. I judge my overall health now October 2021 at about 5% of the the pre-diagnosis level.
The failure of several neurologists early-on to recognize my CIDP resulted directly in my view in a critical delay in treatment. While my IVIG treatments are still quite effective after seven years if started earlier, it might have stopped progression in its tracks. Consequently, it looks like I am now saddled unnecessarily with many CIDP symptoms for life! For a more thorough description of my symptoms please view description of my CIDP Symptoms .
Below you will find a Timeline of development for my CIDP symptoms from 2000 (aged 54-years) to Jan 2022 (aged 76-years) and following a chart showing my Index of the Monthly Severity of my CIDP symptoms 2013-2017
|My CIDP Timeline Progression 2000 (aged 54) - 2022 (aged 76-years)|
|Date Started||CIDP Medical Complaint (some periodical)|
|before 2000||Occasional left foot drag; itchy skin; feeling something wrong|
|2002||NCS (Nerve Conduction Study) = mild peripheral neuropathy|
|2005||Legs stinging and cramping started|
|2006||Feeling of disconnection with legs|
|2007||Sleep on back causes gasping events|
|Nov 2007||Extreme frequent leg cramping night begins|
|Dec 2007||Pains in legs and arms not abating|
|Jan 2008||Brief near-fainting begins|
|Apr 2008||Sudden slight balance problem|
|Apr 18, 2008||NCS = Small reduced nerves reaction - CIDP mention|
|Jan 2009||Sudden extreme eye vibration/wave sense/ fasciculation|
|May 5, 2010||NCS = not much change in year - suggests mild CIDP|
|Jun 2010||Daily life feeling car / sea sick begins|
|Jul-Aug 2010||Visible lower leg fasciculations (muscle bubbling)|
|Jul-Aug 2010||Sense / Some Visible, body internal wave - vibration|
|Jul-Aug 2010||Severe loss of reflex in knees (almost none)|
|Nov 2010||Left hip mild pain begins|
|Jan 12, 2011||CIDP definitive diagnosis confirmed by NCS|
|Mar 2011||IVIG Treatment Campaign|
|Mar 2012||Feeling of chest tightness begins|
|Apr 2012||Short but scary breathing seizure (diaphragm or throat)|
|Jun 2012||Sudden breathing reset: involuntary catch breath events|
|Jul 2012||Sensory-actual stop breathing at rest or before sleep|
|Aug 2012||Serious breathing events when running|
|Sep 2012||Pain under left rib cage begins later spreading|
|Oct 2012||Lower leg muscles extreme tightness & painful|
|Mar 2013||Pain spread over diaphragm and chest|
|Jun 2013||Frequent "breathing attacks" in daily life|
|Jun 12, 2013||NCS = Significant progression in nerve conduction issues|
|Jul 2013||CIDP (leg) pain & breathing disrupting sleep|
|Jul 2013||IVIG Treatment Campaign|
|Nov 2014||Neck (swallow-throat-voice) issues begin|
|Nov 2014||Sensitivity to pressures on body begins|
|Jan 2015||Upper body (arms & hand) weakness & pain begins|
|Mar 09, 2015||NCS = Same as June 2013 - detect motor weakness|
|Mar 2015||Pain especially in legs but also arms escalating|
|Mar 2015||IVIG Treatment Campaign|
|Oct 08, 2015||Sub-Q IgG Weekly CUVITRU Treatment Continuous|
|Sep 2015||Significant diaphragm muscle weakness detected|
|Oct 2015||Leg, Hand and Bodily Pain seemingly unmanageable|
|Nov 17, 2015||Sub-Q SCIG IgG Weekly - Stopped Nov 17, 2015|
|Nov 29, 2015||NCS = CIDP Progression during Sub-Q Hizentra|
|Feb 23, 2016||NCS = CIDP Progression during IgG infusion Holiday|
|Mar 2016||Low-dose IVIG Maintenance Therapy begins Continuous|
|May 2016||Bodily control system unstable & hyper-sensitive start|
|Apr 2017||Some stability from routine of IVIG maintenance therapy|
|Jan 2018||Breathing issue resolved (with ongoing IVIG therapy)|
|Jan 2018||IVIG Treatment Campaign - Full Standard Dose|
|Jun 2018||Head/face/eyes symptoms like fasciculations worsen|
|Dec 07, 2018||NCS = CIDP Stable through 2018|
|Dec 21, 2018||Sub-Q IgG Weekly CUVITRU Treatment Continuous|
|Jan 2019||Back of neck weakness/ pain and eye issues worsen|
|Nov 2019||Weird brain issues begin - especially prior to sleep|
|Feb 2020||NCS = CIDP some improvement since Dec 2018|
|Oct 16, 2020||Last IgG infusion after allergic reaction|
|Nov 03, 2020||Daily Prednisone Nov 03, 2020 through Jan 31, 2021|
|Dec 08, 2020||NCS = CIDP Stable through 2020|
|Jan 2021||Most CIDP symptoms deteriorating|
|Feb 2021||Eyes/ face / head related symptoms dramatic deterioration|
|Aug 02, 2021||Second emerg visit for face/head/weird brain symptoms|
|Dec 14, 2021||NCS = CIDP Stable through 2021|
|Nov 2021||Begin taking Oxcarbezepine for face/head/brain issues|
|*||Italics means an on-going major significant symptom as at Aug 2021|
|NCS = Nerve Conduction Study sometimes with EMG = Electromyography (Muscle fibre test)|
|Body "Control System" = for movement, breathing, temperature and even blood pressure|
* Autonomic "Control System" - CIDP or related faulty autoimmune condition has somehow affected my autonomic nervous system of which breathing, digestion / micturition (bowel and bladder), swallowing, eye control (papillary response) is dependent. The early breathing and 2016 temperature (with night sweats) resolved and are no longer a significant issue in entering 2020.
CIDP Eye Issues Article 2013: “Chronic optic neuropathy in chronic inflammatory demyelinating polyneuropathy: A case report"by Shohei Watanabe1,*, Masanaka Takeda, Tomoko Saito, Akiko Kimuraand Hiroo Yoshikawa. Neurology and Clinical Neuroscience Volume 1, Issue 2, pages 78–81, March 2013. ABSTRACT:. Although some previous reports have suggested optic nerve involvement in chronic inflammatory demyelinating polyneuropathy (CIDP), the clinical course of optic neuropathy has not been well reported. We report a Japanese individual who developed “chronic” optic neuropathy with CIDP. She presented with subacute visual loss of the left eye, and her visual function did not improve until she was treated with two courses of intravenous steroid therapy and seven sessions of immunoadsorption (IA). Although these immunomodulation treatments were carried out 6 months after the onset of visual loss, her visual acuity completely recovered. These findings suggest that optic neuropathy in CIDP patients can show a chronic clinical course, and immunomodulation therapy might be effective against optic neuropathy with CIDP, even when administered during the chronic phase.
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