My CIDP Record 2013 through 2016 - CIDP Experience Log
CIDP Symptoms + CIDP Diagnosis + CIDP Progression + CIDP IVIG Treatment for Chronic Inflammatory Demyelinating Polyneuropathy

Definition: CIDP stands for Chronic Inflammatory Demyelinating Polyneuropathy (or Polyradiculoneuropathy) and is considered an autoimmune disorder destroying myelin, the protective covering of the nerves. Typical early symptoms are extremities "tingling" (sort of electrified vibration or paresthesia) / numbness / weakness, muscle fasciculations (muscle wave / "vibration" / twitching), loss of balance (ataxia), cramping and nerve pain. These CIDP symptoms may worsen over time potentially leading to paralysis and can effect the whole body. The cause of CIDP is unknown and is thought to be very uncommon but significantly underdiagnosed. In 2013 my CIDP neurologist asked me to keep notes on the effects of a six month IVIG therapy campaign and taking this seriously I decided that it would be useful to post these "notes" for others to see. Thus the launch of my CIDPlog. I continue to log my CIDP experience through the summer of 2017.


My "Mild" CIDP Diagnosis?: It took many visits to six neurologists over four years before, thankfully and almost by luck, I was tested by one who knew about CIDP and its symptoms. Up to that point I had been told for example “to take a holiday” or don't worry "some people are just like that”. : A significant contributor to slow diagnosis is the difficulty I had communicating the symptoms - doctors many times seemed overwhelmed by my descriptions. But it is quite difficult for me to explain my symptoms as the sensations and physical effects are so mysterious. I began to think I was a hypochondriac and accepted this overwhelming view from my doctors but I suspect my athletics and healthy appearance didn't help when it came to diagnosis as doctors found it hard to believe I could be ill. Importantly, I now realize that I have a highly sensory (versus motor) version of CIDP (sensory-dominant) which tends to be invisible to an observer. Unfortunately I wrongfully stopped seeking medical advice for about a year. Since I was diagnosed with CIDP in 2011 through 2015 I am told that my test results indicate only "mild demyelinating sensorimotor polyneuropathy" - and certainly many others are far worse off than I. In electro-diagnostic EMG (Electromyography) nerve conduction studies I have slight prolonged F-waves and reduced amplitude latencies. I have slightly above normal protein in spinal fluid. By 2015 I have had progression overall and have more motor weakness including in my diaphragm. However, my CIDP is VERY unpleasant, with the continuous pain alone unmanageable and if it is so mild I would say it would be unbearable to have a severe case of CIDP.

 

My CIDP Development Overview: Started 2001 (aged 56) / Diagnosed 2011 (aged 65) / Progressed 2016 (age now 70 years). Over my five years since being diagnosed with CIDP I have avoided the worse outcome through IVIG treatment and exercise. I think I maintained my leg-strength through commitment to running although I have had some muscle atrophy. Although I find that there is a relationship between the severity of my day-to-day symptoms and my hand-grip-strength, I wonder if "strength loss" in itself should be considered an intrinsic diagnostic symptom (especially in the early stages) of CIDP. I feel CIDP is more an issue of loss of muscle CONTROL (which can later lead to strength loss through reduced activity). Also sensory-dominant CIDP (such as mine initially) does not (apparently) directly impact muscles / motor strength. See sensory vs motor CIDP under symptoms. It feels uncomfortable to move, especially at first: For example, it takes me about 100 steps to feel steady walking. My leg muscles (and feet) have become like rocks and I have a constant day-and-night-time battle against pain and cramping! The cramps can be single muscle almost anywhere in my body or a whole part (like both leg/s and foot at the same time). I have a whole body invisible minute vibration, or buzz as well as fasciculations (muscle bubbling) everywhere (especially legs). I am unable to stay in one position for long particularly sitting at a desk. And in mid-2013 I had developed new unsettling breathing problems (at rest and in exercise) to add to earlier issues that crept up on me over about five years: So again, I myself do not see the symptoms as mild as they now seriously impact my daily living! March 11, 2015 I am told test results show no underlying improvement compared to two years ago and I have more motor involvement. By year 2016 I was having some of the worst days ever for torturous continual pain (in bold because my doctors do not recognize its significance!), increasing upper-body involvement, sleep disruption and "sea-sickness" feeling. In addition for the first time 2017 I feel my life is being threatened in particular by a feeling that my autonomic body control-system (for breathing, temperature, blood pressure and mood) is becoming increasingly unstable. (For example, I have frequent sweating and was in emergency June 2016 with sudden persistence high blood pressure 190/80? for a day . I am a endocrinologist now in in early 2017 who is investigating hormones & other body control issues although I feel that I have in the meantime stabilised as I become more astute at managing my symptoms.

 

My CIDP Management: Other than CIDP I have always had excellent health. As a 20 year veteran of 10k running I am very aware of changes happening to by body, and certainly did not expect to experience CIDP symptoms. But June 8, 2013 I tried and cannot run a 10k at my normal pace and indeed even a very slow 8.5k is problematic. My breathing prior to this issue was perfect - running a 10k with ease (NO elevated breathing necessary). This lasted about a year and by now in 2016 I am back to running 10km at a reasonable pace. Although movement is uncomfortable, exercise may be the best non-medical treatment for my CIDP. I also do daily stretching to alleviate cramping and I find frequent all muscle movement an essential treatment for my CIDP. Entering 2017 I find pain management a dominating need: movement, exercise, stretching as well as keeping "overheated" seem helpful in controlling my CIDP nerve & muscle pain. I have an excellent diet which is gluten free and this has reduced my CIDP-induced digestive discomfort. I do not take drugs or vitamins (other than IVIG treatment which is a blood product). I avoid exposure to chemicals especially those at home including perfumes/lotion. More at "My CIDP Management".

CIDPlog.com Content: On this website CIDPlog I give you ONE person's version of how it is to have CIDP. According to doctors the symptoms of CIDP vary widely among patients and they say there are variants* of CIDP. Although I am a technical person, I am not a doctor: All I suggest is that if your experience-and-symptoms are similar to mine tell your doctor about CIDP and consult one of the very few neurologist specialists in CIDP: Seek out a few opinions as even CIDP specialists do not always agree on CIDP symptoms or treatment! If caught early doctors say CIDP can be cured (or at least controlled) with Intravenous Immunological IVIg infusions. IVIG is a growing albeit very expensive first line treatment for CIDP and has proved fundamentally helpful in my case - especially in the early stages of my CIDP. The effectiveness by 2015 is much less and I am not cured (and no longer have expectation of a full cure). For me CIDP as you will read is not pleasant: day-to-day living is quite a chore and the dependence on IVIG pretty tough going. In October 2015 I started infusing IgPro20 subcutaneously (Sub-Q Hizentra) weekly for an indeterminate time but this was stopped when it proved ineffective. As of March 2016 I was placed on a low maintenance dose IVIG and life and this continues July 2017 has become quite a challenge. On this website I will -

  1. Record my CIDP Timeline 2000-2016 until now (periodically updated)
  2. Document and describe my CIDP Symptoms now in 2013 and beyond
  3. My summary log chart and findings on my CIDP infusions of IG 2012-2016
  4. Daily log of response to 2nd eight-months round of IVIg July 2013 - April 2014
  5. Monthly log of IVIG impacts March-October 2015
  6. Log of Sub-Q trial SCIG (subcutaneous self-infused Hizentra) Oct. 2015
  7. Low "Maintenance Dose" IVIg Therapy for CIDP starting March 2016

Unfortunately my IVIG treatment was started too late due to the delay in diagnosis. I feel this was a result of the very low awareness of CIDP, patient-doctor symptom communications difficulties and the lack of expertise required to diagnose CIDP. I have personally witnessed that this CIDP expertise is limited to less than a handful in Canada and there is only one CIDP Clinic in Canada that I could identify. However, I do now have world class medical advice from the very best in Canada - indeed a fully internationally recognized Centre of Excellence CIDP Clinic (Toronto General Hospital)!

Please write me with your CIDP experience: I would like to hear especially from CIDP patients who think I have missed something due to their own experience with CIDP.

Exercise intolerance is a symptom of and is intrinsic to CIDP: Sometimes my legs feel they do not want to move and I have to "force" myself. But exercise is essential to alleviate CIDP induced loss of control, cramping, pain and muscle weakness. Interestingly some outstanding professional athletes (gold medalist no less) have written me about their experience with CIDP and impact of IVIG, for example. This is useful information as it appears confirmatory that exercise does not provide immunity against CIDP and also that exercise is a very useful treatment for CIDP (if you can manage it).

Editor, CIDPlog.com email: editor@cidplog.com

GBS Guillain-Barré Syndrome relation to CIDP and the ZIKA virus: CIDP is the chronic version of GBS Guillain-Barre Syndrome meaning that it is more persistent with CIDP symptoms tending to develop over a much longer timeline - a diagnosis of Guillain-Barré Syndrome may be entirely reasonably later be revised to CIDP if the symptoms persists long term (over eight weeks). GBS Guillain-Barre Syndrome has in February 2016 been linked to the ZIKA virus (notably in Brazil & Columbia). If your symptoms are similar to mine, developed suddenly and you could have been exposed to ZIKA bearing mosquitoes you should seek medical advice as soon as possible!

* CIDP VARIATIONS: Chronic neuropathies are operationally classified as primarily demyelinating or axonal, on the basis of electrodiagnostic or pathological criteria. Demyelinating neuropathies are further classified as hereditary or acquired—this distinction is important, because the acquired neuropathies are immune-mediated and, thus, amenable to treatment. The acquired chronic demyelinating neuropathies include chronic inflammatory demyelinating polyneuropathy (CIDP), neuropathy associated with monoclonal IgM antibodies to myelin-associated glycoprotein (MAG; anti-MAG neuropathy), multifocal motor neuropathy (MMN), and POEMS syndrome. They have characteristic—though overlapping—clinical presentations, are mediated by distinct immune mechanisms, and respond to different therapies. CIDP is the default diagnosis if the neuropathy is demyelinating and no other cause is found. Anti-MAG neuropathy is diagnosed on the basis of the presence of anti-MAG antibodies, MMN is characterized by multifocal weakness and motor conduction blocks, and POEMS syndrome is associated with IgG or IgA λ-type monoclonal gammopathy and osteosclerotic myeloma. The correct diagnosis, however, can be difficult to make in patients with atypical or overlapping presentations, or nondefinitive laboratory studies. First-line treatments include intravenous immunoglobulin (IVIg), corticosteroids or plasmapheresis for CIDP; IVIg for MMN; rituximab for anti-MAG neuropathy; and irradiation or chemotherapy for POEMS syndrome. A correct diagnosis is required for choosing the appropriate treatment, with the aim of preventing progressive neuropathy.*

CONCEPTS for My CIDP Log of CIDP Experience + CIDP Symptoms and treatment + CIDP Diagnosis + CIDP Progression Timeline + CIDP IVIG Treatment: CIDP, C.I.D.P., my cidp symptoms treatment, CIDP Log, CIDP as Chronic Inflammatory Demyelinating Polyneuropathy, Demyelinating Neuropathies , Neuromuscular, living with CIDP, CIDP prognosis, IVIG treatment, CIDP Case Study, Chronic Inflammatory Demyelinating Polyradiculoneuropathy, CIDP Case Study, GBS, Guillain-Barre, CIDP symptoms, CIDP treatment, rare disease, CIDP drugs, CIDP IVIG infusions, IVIG Therapy, CIDP ataxia, spontaneous, CIDP fasciculations, CIDP tremor, CIDP twitch, CIDP balance, CIDP and exercise, CIDP runner, worsening CIDP, how long IVIG, livingwithcidp.org, living with CIDP, getting worse with IVIG, getting better with IVIG, CIDP pain, GBS/CIDP Foundation, sensory, autonomic, motor, strength, ALS, neuron, neurological, neurologist, CIDP muscle weakness, assessing IVIG success, CIDP Canada, CIDP specialist, CIDP doctor, breathing, shortness of breath, Dyspnea uncomfortable abnormal awareness of breathing, respiratory arrest, respiratory distress, digestion, cardiac, autonomic, neuropathy, peripheral, intolerance, gluten free, autoimmune, disease, syndrome, condition, medical, medicine, motor neuron, MND, blog, discussion, cidp blog, CIDP in Canada, Intravenous Immunoglobulin, worldwide IgPro20 drug trial, research, survey, side-effects, my CIDP, timeline, progress, progression, prognosis, F-wave, cidp worse with ivig, symptoms of cidp short of breath, life threatening, Autoimmune Polyendocrine Syndrome, conduction studies or electromyography, multifocal motor neuropathy (MMN). GBS related to ZIKA virus causes GBS CIDP. Updated Dec 2017