CIDP RECOVERY IMPAIRED MOBILITY TO ABLE-BODIED?
WHATEVER IT TAKES KEEP GOING
CIDP & RECOVERY?
There is a famous expression in English:
'When the going gets tough, the tough get going'
–meaning when the situation becomes difficult, the strong will work harder to meet the challenge. Sometimes, when we are in a tough situation, an inspirational quote or saying can help us calm down and focus on what we need to do.
Motorsport Quote
Search motorsport quote on this blog from well known Australian motorsport driver's and Henry Ford's simple truism of belief. All could be applied to life in general.
'It's not rare if it happens to you'.
Traveldriven quote
WHAT IS CHRONIC
INFLAMMATORY DEMYELINATING POLYNEUROPATHY
UNDERSTANDING CHRONIC
INFLAMMATORY DEMYELINATING POLNEUROPATHY
SIGNS OF AND EXPLANATION OF
CHRONIC INFLAMMATORY DEMYELINATING POLYNEUROPATHY
OUR PAINTBALL GROUP
SNIPERS DEN MELBOURNE
Myself second from left as a
lefthanded paintball shooter
THE OPPONENTS CHINESE SOLDIERS?
First and only paintball experience. Great day out by all on a hot Melbourne day. We received many hits and returned many back. Eight weeks before CIDP diagnosis.
AFTER HOSPITAL DISCHARGE
& HOME WITH CIDP
My CIDP journey is written below. Living with a rare serious condition before, during and the aftermath of the COVID-19 pandemic. Hopefully the worst is over with CIDP and will not return. Allowing some CIDP recovery to take place. Below is primarily published with a view to help other's recently GBS/CIDP diagnosed. Written for myself as a self improvement reference. How CIDP changed life in general and for those interested in rare conditions from a non medical perspective.
Viewpoint of first hand CIDP experience.
5,182 words 20 minute read
Chronic Inflammatory
Demyelinating Polyneuropathy
An immune system disorder. Attacks the myelin sheath of peripheral nerves. In my opinion CIDP brings much uncertainty. Saintly patience is required for nerve self-repair. If any repair does occur, it often will take years. There are many unique symptoms of CIDP damaged nerves.
CIDP has many pathways.
Following is one individual's perspective.
Life with CIDP.
Hi, my name is Wayne. I live in a small regional Victorian city. It is January of 2019 no health issues and 59 years of age. Working as a food industry employee on the factory floor involving physical work and long periods of standing. Although physically demanding work, I had no problem carrying out work duties. Thought I should get a doctor's check-up. Something didn't feel right.
Affecting Daily Life
I booked a GP appointment. I explained I was experiencing numb toes and tingle sensations. The gist of the consultation was to come back if things did not improve in three or four weeks'.
Shortly after, a weekend day drive to a coastal tourist town left me wondering how safe my driving was. I own two sedans. One manual and one automatic. Driving my automatic transmission car in the busy main street I stopped in traffic. A car behind and a car in front. I depressed my right foot on the brake unaware the side of my foot was still on the accelerator pedal. Smelling tyre smoke and engine revving I turned the ignition off. I did not have enough feeling in my feet to feel the pedals. An accident avoided and a cautious drive home.
Acupuncture?
It was suggested acupuncture may be beneficial. Unsure of driving ability. I travelled by train to Melbourne. Sceptically, I agreed on a two hour consultation. The Chinese acupuncturist inserted needles in feet and upon withdrawal all were bent at right angles. The acupuncturist commented the normal needle curvature was severely bent out of shape on all needles. Evidence of extremely taunt tendons. He recommended daily use of a foot spa diluted with whisky and two more sessions. An incredulous recommendation in my opinion.
I returned home unconvinced acupuncture made any difference. I declined the two further expensive sessions.
In an Immobile State and Past Trauma
I was struggling to lift my feet for no apparent reason. All my fingers tingled and toes felt numb. Accessing my car I stumbled backwards and fell on my lawn. I overturned a coffee mug at a local café with family and friends. Weak hand grip coordination.
Within two weeks I returned to my local GP for a second appointment. The doctor referred me to a Melbourne neurologist a few hour's drive away. The first appointment was ten days off in Ballarat. I spent the time housebound and unable to work. Leg strength and balance are getting worse. No feeling in feet. Weak gait. Six attempts to park the automatic car in the garage behind the roller door. Unable to drive. No public transport available. I live alone as my wife of twenty-three years passed away with breast cancer two years before.
Connie, my wife, would have been whole heartily supportive one hundred percent, as I of her. I remembered getting the all clear result of a routine health scan over eighteen months prior from a prominent doctor. Who happened to be my wife's surgeon. I was sitting in the doctor's clinic unable to speak when asked questions. Maybe ten minutes or more. Memories of the cancer clinical setting all around me suddenly and unexpectedly affected my speech. The surgeon walked me to reception. This was a few months preceding my solo eight week road trip around much of Australia in a sedan. For me, long drives addressed trauma.
Waiting for Medical Help
Now, nearly two years later I needed to see a specialist. What is it? At least I knew I didn't have cancer. I have no home support. After several days I could barely walk around inside my home. I telephoned the Melbourne neurologist's reception twice and tried to bring the appointment date forward. I offered to get myself to the Melbourne clinic as my condition was deteriorating. My walking is becoming weaker. Reception replied the original appointment was the earliest date and all earlier times were fully booked. I asked if I could speak to the neurologist. 'No, he's with a patient'. Ok, so I waited at home with a stoic attitude thinking everything will be ok after a week or two of rest. My respiratory condition felt normal during this time.
A further five days passed housebound and I was then driven to my neurologist appointment. I attended a medical consulting clinic used by visiting Melbourne specialists. Located in the large regional city of Ballarat. Upon seeing myself struggling to walk and assessing absent nerve reflexes the neurologist immediately admitted me to St Vincent's Hospital Melbourne. He telephoned the hospital on the spot. Luckily I carried a small overnight case. Allowed no time to return home to pack a bag. My driver kindly agreed to drive directly to the Melbourne hospital. I distinctly remember the neurologist telling me I think you have GBS or CIDP. Let's hope not CIDP. Of course, I was clueless of these remarks. Myself, like many, not realising the serious health implications of these unheard of conditions.
In both Guillain-Barré Syndrome and Chronic Inflammatory Demyelinating Polyneuropathy one's own healthy immune system turns rogue and attacks the peripheral nerves. Classified as autoimmune disorders.
GBS is seen as an acute disorder occurring once only and is of a relatively short duration. CIDP is the chronic counterpart of GBS.
Unknown Cause
CIDP origins are idiopathic, (unknown). Although, one United States research paper documented a small cluster of GBS/CIDP cases among workers in a piggery attributed to Campylobacter Jejuni sometimes found in slaughtered pig, sheep or chicken. I worked in the food industry for years with daily exposure to dried blood from thousands of freshly slaughtered sheep. The provided cotton hood head/face and body protective clothing ineffective as a 100% barrier against dried blood contact.
Medical publications such as; National Library of Medicine, Journal of Neuroimmunology etc, cite up to 40% of those diagnosed with GBS/CIDP showed a viral infection with Campylobacter in the few weeks prior to symptoms appearing as the result of the onset of nerve demyelination.
No Campylobacter was found in the many blood tests I had in the hospital. I don't recall having common symptoms of Campylobacter. The short answer is I never had a Campylobacter infection. Although I can't state this with one hundred percent certainty. Medical literature cites livestock workers with a positive viral infection to Campylobacter Jejuni have a one in a one thousand chance of acquiring GBS or CIDP. For the general population there is a one in a one hundred thousand chance of a GBS/CIDP diagnosis with no exposure to livestock.
HOSPITALISATION
My first hospital admission as a patient in over forty years.
I began intravenous immunoglobulin (IVIG) infusion of Privigen that night, Friday. Each infusion takes about three to four hours. Administered through a catheter needle inserted into a vein in the arm to overwhelm the immune system's own antibodies attacking the nerves. The third consecutive day of IVIG had a late finish of 3am. The end of the loading dose of IVIG treatment. Within days I had a lumbar puncture (spinal tap).
Symptoms, Not Good
A nerve conduction study showed total and partial blockage on major leg nerves. Symmetrical left and right of the body. Multiple blood tests and other tests were carried out. One doctor told me a blood sample was sent to Western Australia for analysis in a laboratory. Apparently testing for this one particular pathogen could only be undertaken in Perth. Why? I don't know! The result returned negative. Good. All tests showed no evidence of recent viral or bacterial infections. Nothing.
Disabled and Bleak Outlook
All the staff treated me well. I could not walk and was dependent on a wheelchair. A walking frame provided some standing support for very limited room use. Complete loss of balance. Numb from backside and legs down. No leg reflexes. Paralysis of all four limbs. Acute abdominal tightness caused moderate breathing constriction. Tested twice daily for breathing capacity in anticipation I needed artificial breathing assistance via a ventilator. Daily stomach injections to prevent blood clots because of immobility. I have always been a non-smoker. I took solace in this. Additional complications I could do without. I could hold light weight items such as a spoon, fork and knife but all extremely hard to use. Unable to open served food or drink lids. Unable to write or use a cell phone, buttons, zippers, tie laces or hold a small cup of coffee in one hand. Initially, a few instances where vision was blurry but became quickly focused again. There was mild shortness of breath due to tightness around the torso. Facial movements unaffected.
No Further Deterioration
Doctor's asked if I could wiggle my toes up and down. I did to our surprise. My condition did not deteriorate any further after the first few days while in hospital. By week's end doctor's assessed my condition as somewhat stable. With mutual agreement my public hospital bed was moved to other wards five times during my lengthy hospitalisation. Even down a floor to another ward. All wards at full capacity. I was stable and under supervision. I was later told the first course of IVIG probably stalled the progression of CIDP. I understood progression meant reliance on a ventilator and total immobility before likely incremental improvement.
Specialist Consensus and First Symptom?
I agreed to be wheeled in my wheelchair to the once every Friday specialist meeting. On an overhead projector my condition and possible diagnosis was discussed in front of twenty or so experts including the department head Professor of Neurology. Doctor's posed questions with pen and notebook in hand. I answered what I knew. Specialists later diagnosed CIDP and not GBS as my symptoms were at least eight weeks. A little more than two months before diagnosis I paid for a family paintball day in Melbourne. My legs gave way underneath me on short sprints. No pain. Just momentarily weak legs. I thought this odd and amusing at the time. I attributed this to overworking myself. In hindsight, the first symptom of CIDP that I can recall. Normally I don't jog. St Vincent's Hospital Melbourne had no other patients with GBS or CIDP. Both are very rare conditions. Apparently there is a one in one hundred thousand chance of a CIDP diagnosis.
Long Term Hospitalisation Concerns
The isolation of a big city hospital away from familiar faces is very confronting. Placed in the Neurology Ward with many seriously ill people. An adjacent patient had suffered a mild stroke and was up and about unassisted walking, talking and using all four limbs very well within a few days. A lucky man. Not so for myself, diagnosed with a crippling condition. Prognosis unknown.
During most of my hospital stay my only regular visitor was a weekly visit from a volunteer inter-church counsellor. These visits were really helpful and appreciated. A family member paid me a day's visit. I was pushed around the large hospital city block in my wheelchair. Along busy Victoria Parade avoiding able-bodied pedestrians. It can't be understated how great it felt to feel the fresh air and warm sun on your face after one month inside. Myself wondering if this is permanent now? Wheelchair dependent. Medical staff were not telling anything. Not wanting to give false hope.
Autonomic nervous system dysfunction can occur. In my case, hints of autonomic system involvement appeared but thankfully no progression occurred. These serious symptoms range from incapacity to breathe, double vision and sight deterioration with optic nerve damage, bowel & bladder dysfunction, total loss of ambulatory function and cardiac irregularities. All due to nerve and muscle interactions within the body. Symptoms as mentioned may or may not occur.
Hence, why my five week hospitalisation and medical specialist uncertainty.
INPATIENT REHABILITATION
I spent five weeks in this major Melbourne hospital followed by nearly a week of inpatient rehabilitation. In a facility even further from home in the eastern suburbs of Melbourne. I used a walker now.
I watched through the window from my hospital bed a pair of hot air balloons very low above buildings. Nightly tv news said they made an emergency landing nearby. I thought at least these people had access to the outdoors and were not confined to a hospital. Transferred again. For a period of almost two weeks to a large regional rehabilitation facility in Ballarat. Transferred between by ambulance. I sat next to the driver for the two hour trip.
Fellow Patients
There was another patient in the back of the ambulance for the entire drive. A sedated female stroke patient, by appearances not yet at retirement age, nearing end of life. We drove her to the same palliative care facility where my wife spent her last weeks. The palliative building was adjoined to the rehabilitation complex. It was a solemn two hour ride for me.
Walker and Red tape
Admitted to rehab. My own room. Walker handles wrapped with red tape. Red tape is replaced with green tape once walking is assessed as safe unsupervised. Mixed in with recovering stroke and cardiology patients. I spent regular physio sessions among patients clumsily sliding Domino pieces around table tops. Myself much more advanced than those with stroke recovery. Creatively and carefully building multi levels of Domino's. Of course no one had heard of Chronic Inflammatory Demyelinating Polyneuropathy. Both my feet are equally affected by CIDP induced peripheral neuropathy. Can I eventually learn to walk normally unaided? CIDP uncertainty plays mind games with you.
Twice a day early morning and mid evening l decided to attempt a circuit walk around the ward corridors and nursing station. Outside of structured daily physiotherapy sessions. Against the red tape supervision rules. I felt competent enough as long as I used a walker. I am not normally one to go against guidelines. I wanted to be proactive. I decided I would pay heed to the advice if questioned. Pushing my walker my hope was to progress from red to green tape. My aim was to complete ten laps. All exhausting work. Rolling past other inpatient rooms. People such as Mark, who was paraplegic from a diving accident and found it hard to face the day. Blankets pulled over his head. Thinking I'm not wheelchair dependent anymore as I was nearly two months before and now able to use a walker these last seven days. I self-recalled a road trip to Townsville Queensland. How fortunate Max the pilot and I were from the Tiger Moth joy flight forced landing on the Mackay Ring Road in 2018 with a broken crankshaft sustaining no injuries. Especially spinal injuries like Mark. Thinking of the inhouse gym physio sessions both Mark and I attended. He is in his wheelchair. Apparently a potential fate I have now avoided twice within the space of twelve months. I rolled my walker past the longest inpatient resident. Leslie, a double amputee. Foot and one arm past the elbow. He wanted the rehab. facility to become his permanent home. I rolled past the recreation area with its chairs, television and books.
Unknown Outlook on Recovery
Towards the end of my stay two female physiotherapy staff were to take me to an adjoining building with a two storey stairwell. Attempting the stairwell was very exhausting. Supported all the while taking small steps and resting legs. Could have taken a cut lunch with the time it took. Still it was something achieved. Physiotherapy staff were faultless guiding and physically supporting me on how to walk. Dealt with my strong safety concerns and poor expectations. Self balance was still a major issue.
Once every four weeks IVIG infusion of Privigen. The initial loading dosage was calculated by patient weight. Future dosage unchanged even with weight variability. Taken daily, an Azathioprine (immunosuppressant) tablet. Given to counter progression of CIDP.
Green Tape Approval
Doctor's unable to provide a prognosis.
Using my walker in rehab. Now authorised with green tape I asked a visiting neurologist if this is true. One third of CIDP patients are wheelchair bound for life. One third recover to near their former self and one third are somewhere in between. CIDP by definition is often characterised by a relapsing–remitting course. Severity and duration unknown. The neurologist agreed with this and replied I wasn't in a wheelchair anymore. I also now thought at least I could walk with a walking frame and green tape. Will this be the new normal? Walking stick wound with red or green tape is still far beyond my capability.
Unease On Ability for Future Home Self Care
In an adjacent ward a recovering stroke patient was due to be discharged in the next few days and suffered a lengthy seizure becoming unconscious. Drugs were administered to regain consciousness. Not exactly instilling in me the confidence of the rehab. centre’s assessment on my readiness for my imminent discharge. Wondering how I will cope by myself at home? No at home Care Plan was planned or established by the medical profession. My thoughts were that future welfare dependency was inevitable.
One of the facilities visitors was the minister of my local church. A coincidence chance meeting. With myself using a walking frame together we attended the adjoining palliative care facility to give thanks again to staff from two years ago. But the staff had moved on. The Minister's comforting presence and support was greatly appreciated. I was visited only once in Ballarat Rehab.
Day Pass Out Refused
A long time friend agreed to drive me home and back for a day on an upcoming weekend. Return drive of three hours. However on presentation at the main entry reception the facility doctor-in-charge refused me a pass out. Judged too high a risk to health due to the current summer heat wave conditions. Disappointment prevailing. I apologised to my driver for the wasted long drive. I would have liked a short break from the hospital environment. Now unable due to doctor's orders. Approaching two months of unbroken hospital stays and still cannot return home. Within another week I was discharged.
HOSPITAL REHABILITATION DISCHARGE
I required home help with housework and to be driven about. I was physically incapable of driving. A home help service was made available usually once per week for the following several months and was provided by local government providers. Following rehabilitation discharge I needed to seek out and meet eligibility requirements for this health service for a monthly fee. Also long term podiatry services for a nominal fee. I used a combination of a walking frame and a stick. My duration of care was uncertain. Occasionally I attempted a walking stick only.
Home Self Care Struggle
It was a big struggle to walk. Collect mail from my front yard letterbox and feed the cat and dog in the backyard in the initial four months. There was great difficulty twisting household taps and dressing daily. I enrolled in physiotherapy and hydrotherapy. Unable to write in a legible manner. I signed an X on the paperwork.
Walking was severely restricted by weakened legs, peripheral neuropathy of both hands and feet, (paraesthesia) and CIDP induced severe tightness around the torso. Symmetrical left and right of the torso. Tightness may be described as banding, tapering to the spine.
My local hospital provided monthly IVIG infusions in their Oncology centre. The same wards, the same familiar nursing staff and the same infusion method my wife received for cancer treatment. The same familiar medical equipment. Two years on. Here I am. Surrounded by everything I wanted to forget. In my mind cancer kills and CIDP cripples. Me, a distressed witness of prior circumstance. I was back in the same environment and building. I reminded myself it's all for the best and left it at that. Accepting the hard physical and mental health challenges.
I was struggling with poor ambulatory function longer than seven months post diagnosis. For example, the assistance of three people was required to descend a vehicle dealership's long flight of stairs. Assistance required from the front, back, side and guidance of the guard rail with frequent stops. As I lived alone and struggled daily with CIDP I considered applying for Meals On Wheels. I gathered I did not fit the criteria for the service. On occasion a family friend, who was a prominent member of a local church, delivered a cooked meal. I greatly appreciated it.
More than nine months passed and I was in-effect housebound and isolated. The later half of 2019 my mobility had improved and I was not entirely housebound anymore. Medical approval was given to drive a private motor vehicle subject to future review. On the eve of the Covid-19 lockdowns of a 5 km radius from home. Bitter sweet timing as I have always been a driving enthusiast. Thankfully, driving a private vehicle was not permanently revoked such as all commercial and volunteer driving was.
Hoping for some relief of long term improvement
Normal touch sensation had long since returned. For many months everything was like coarse sandpaper to the touch. Even to pat the dog and cat. Initially the first twelve months of abnormal unpleasant foot sensations of crawling ants on skin and sometimes legs to doubt one's sanity.
I confronted significant immobility struggles and home isolation in the twelve months preceding the COVID-19 pandemic.
As I was immunocompromised COVID-19 vaccines were required. Four injections were completed. I was aware that in the most dire of Covid-19 hospital patients, a hyperactivated immune system triggers a cytokine storm in the lungs, a life threatening condition. Twelve months of weekly outpatient physiotherapy sessions were COVID-19 interrupted and eventually stopped all together. I needed to think outside the box to address isolation, boredom and limited mobility during COVID-19 and frequent lockdowns.
I purchased Virtual Reality hardware and software for the home desktop pc. I watched 3d movies in a virtual reality cinema. VR offered a very real comforting feeling of freedom, experiences and escape from over twelve months of CIDP immobility. I also continued developing my own road trips website. Self taught through trial and error. I navigated isolation and restriction challenges of COVID-19 without infection.
I was made aware of a free twelve month government counselling program made available for people to boost their mental health during Covid-19. Although I was fine. I thought this may be a good program for me to view as insurance. In the event I suffered a total CIDP relapse.
I used the service as an outlet and to maintain a positive attitude. Although beneficial, I viewed it as irrelevant unless I had a total CIDP relapse back to square one. I viewed the program as my insurance backup. A positive strategy if the worst occurred again.
CIDP LONG TERM FIVE YEARS
The National Library of Medicine (USA) has available scientific literature online of a small study detailing the long term prognosis of chronic inflammatory demyelinating polyneuropathy. A five year follow up of thirty-eight cases with no comorbidities. Source is from, Journal of Neurology, Neurosurgery & Psychiatry. An informative paper the layperson can largely understand. Following is a five year summary after my CIDP diagnosis and subsequent IVIG infusions. The ongoing purpose of infusions is to maintain patient ambulation while encouraging a healthy autoimmune response to the peripheral nervous system.
Since late of 2021 no mobility aids or home assists.
I have no comorbidities with CIDP. Chronic peripheral neuropathy is commonly associated with diabetes. I am not diabetic nor pre-diabetic.
No muscle atrophy. Although persistent neuropathic pain was experienced for three years in the torso and feet. No nerve pain medications were offered. Tempting to ask for, but not wanting prescription addiction. Nerve pain abated somewhat after four years. No separate health issues.
Three Years Living With CIDP
During the initial three years. The need to rest extremely fatigued legs and arms whilst attending appointments, in supermarket queues and public places. Three years of short daily showering and brief house tasks for the same reasons. Effectively, early labour force retirement.
For example a long three years from hospitalisation for a first attempt at extended car driving. Also the ability to be able to hand wash a car uninterrupted by multiple rest breaks for fatigued legs and arms. Mow a small lawn without resting legs. Walking slowly for more than thirty minutes.
I've always enjoyed driving. Good to not feel significant under the ribcage wincing from torso tightness, (abdominal nerves inflammation?) over every minor highway jolt and bump. Three plus years to get to near normality. Will this be maintained! Or will I experience a relapse?
All these personal milestones and more were not guaranteed. An estimate on time taken to gain improvements, if any, cannot be obtained from the medical profession. It's the uncertainty nature of CIDP.
My three year disability Parking Permit renewal was twice refused and not renewed. Even with General Practitioner doctor input and submission. Hopefully my believeth was that the Permit would be deemed unnecessary in twelve months time anyway.
Four Years Living With CIDP
After four years of incremental improvement and at last, reducing nerve discomfort. Improvement also shown around the torso. In my own mind, a relapse and a wheelchair scenario was not expected again. I experienced throughout this time the ever present, unpleasant feelings of large rounded stones/balls under both feet. Symptoms associated with CIDP neuropathy.
CIDP impacts nerve myelin, nerve axons and causes inflammation of nerve roots. If nerves are too damaged, limited or no long term healing is possible for the unfortunate. Medical papers cite nerve regeneration is 1mm per day or about one inch per month with no active disease.
Neurologist Appointments and Tests
Undertaken not more than once every twelve months by a neurologist a nerve conduction study revealed improvements in lower limb nerve conduction and functionality. Had previously been assumed a plateau was attained. This was incorrect. Small improvements greater than fifty months from diagnosis still achievable. Although nerve conduction is outside of acceptable parameters. Shows further improvement is possible even after fifty months.
By way of an explanation. A nerve conduction study involves the combination of two electrodes placed on the skin of an arm or leg above a length of a nerve and electrical conduction is measured between the electrodes. Multiple nerves may be tested. The person quite often experiences a small amount of discomfort when the brief electrical shocks are applied. The shocks are low voltage and so are harmless to anyone.
A four year MRI scan follow up completed of the spine and cranial cavity. Dye injected. Not less than a one hour process. An investigation into chronic torso tightness since the initial CIDP diagnosis four years previously. A scan for demyelinating disease and lesions of the central nervous system. Conclusion was of no demyelination or lesions identified of the central nervous system. Normal scan result. No nerve entrapment or Multiple Sclerosis (MS) pathology. No additional neurological problems.
CIDP is a peripheral nervous system condition. There is no spinal or brain involvement in CIDP. Now I am experiencing almost pre-CIDP ambulatory and strength function, except lower limbs. Walking a moderate distance is ok. Sixty minutes. Normal pace. No walking aids are required. This is a significant bonus.
Five Years Living With CIDP
On approaching five years of CIDP.
Residual symptoms include; moderate symmetrical ceaseless tingling felt underneath both feet. Mild tingling in the hands. Mild torso tightness and mild symmetrical weakness in legs. Normal touch sensitivity in hands and feet.
IVIG infusion is ongoing and is now changed to Privigen infusion of 40g completed on one day, six weekly up to a four hour duration. Instead of over two days every six weeks. Purpose is to halve hospital attendance to one day and avoid possible or probable multiple failed attempts of catheter (I.V. needle) insertion into a vein due to poor venous access. The merits of self-administered subcutaneous immunoglobulin (SCIg) infusion may be an option for future consideration if infusion attempts are increasingly problematic.
Time to underscore CIDP.
Obviously no progression or relapse.
Discontinuation of IVIG is unlikely?
In my opinion, it is a medical specialist decision.
Beyond Five Years
I regard myself as a driving enthusiast.
I enjoy travelling within Australia. During May 2024 I completed a nine day tour as a passenger in a SUV to Outback Queensland. A return distance of 3,400 km Adelaide to Adelaide, South Australia. I drove myself 500 km to Adelaide to begin the tour. Return to home base was driven in one day.
On no part of the trip special allowances were made because of ongoing CIDP symptoms. Nor was personal enjoyment diminished considering much travel was on unsealed and sometimes rough roads.
All tour optional excursions and activities were completed as normal.
Although significant improvement takes a very long time and gains are uncertain. With the passage of time symptoms may eventually fade and not permanently worsen.
I hope this is encouragement to those newly diagnosed.
Returning to living near a normal life is possible with; Chronic Inflammatory Demyelination Polyneuropathy.
Living with CIDP & IVIG
Well past the five year initial diagnosis of CIDP and there is still incremental improvement felt. Tingling nerves are still present.
Living long term with CIDP and to divert attention away from CIDP symptoms, there is merit in listening to music. Provides home based enjoyment. Social interaction is important for health. Enjoy any family time. Attend live events. Join a light physical activity group. Tai Chi? Join a neuropathy focus group. If only to listen to others and chat. People familiar with CIDP give perspective and may offer valuable first hand information on a rare condition such as CIDP.
IVIG infusion dosage has never been greater than 40g. The first few years were infused four weekly then six weekly. I have not experienced any significant decreased mobility between IVIG infusions as many do. I have never experienced an adverse reaction to the infusion flow rate of IVIG. Reaction after effects may include headaches and nausea.
Seek, evaluate and trust answers from specialists and hope for the best.
CIDP is not predisposed by any prior physical, mental health or lifestyle attributes. Is not hereditary or contagious. It's a rare condition.
General Practitioners rarely see it, if at all.
CONCLUSION
All of the above gives an insight into CIDP. At least as applicable to one individual's experience. Hopefully all the aforementioned addresses a lack of awareness and knowledge concerning Chronic Inflammatory Demyelinating Polyneuropathy.
All things considered, quality of life is good.
Enjoy the one handed cup of coffee. The freedom of walking unassisted in the outdoor fresh air. Driving the countryside. The simple things.
A CIDP diagnosis and pathway is full of uncertainty for all. Don't dwell on anything that may never happen or recur.
Be honest and patient with yourself. Don't say why me! CIDP is a treatable condition. Despite all the aforementioned I still consider myself fortunate. I don't seek sympathy. In my experience empathy for rare hidden conditions is improbable outside of immediate family. CIDP awareness would be a start. We don't get a choice of autoimmune or neurological disorders. These disorders cannot be prevented by lifestyle choices. It is our choice how we choose to respond and live our lives.
There is a Latin phrase. Amor Fati accept one's fate, find the elusive positives and move on.
Amor Fati
Wayne
