A Dupuytrens Contracture story

---

 

1965: Tonsillectomy
1968: Odd skin 2 inch rash/wheal on inside of left lower leg. undiagnosed
1978: Zadek operation, botched removal of big toenail rootbed
1980: Contracted Glandular Fever - lasted 12 months of debilitation - never felt 100% since.
1980: Possible irradiation. Worked in Operating Theatre, slept on-call on trolley overnight within 18 inches of “long handled lead canister” used for transporting nuclear medical tracer. I do not know whether it contained material.
1986 Clamydia - treated.
1990 Suffered car whiplash - much later diagnosed as misalignment of axis and atlas vertebrae in neck. 2005: Whilst on holiday in Turkey I breathed in “fogging insecticide” -whilst hotel was being fogged internally. It was a Permethrin based insecticide, in “external use” dosage.
2009 Suffered car whiplash - physio fails to completely reduce stiffness and pain to neck - symptoms persist

*
2009  Left knee operated on to shave meniscal tear and drain cyst

*
2010  Diagnosed Depuytrens Contracture in right hand and Garrod’s pads on knuckles of both.

*
2011  Depuytrens Contracture in right hand is developing and now evident in Left hand, and both feet

2011 Diagnosed Chronic Fatigue. Leaky Gut syndrome. Toxicity of Mercury. Tin, Cadmium, Formaldehyde. Vitamin deficiencies. High Rheumatoid factor.
2012 Pancreatitis Pancreatic Duct mucous and IPMN - undergoing investigations, ERCP
2012 Whipple’s operation - Removal of Duodenum, Gall Bladder, Bile Duct and tail of Pancreas.

*
2012  Pancreatitis post operative?

*
2013  Joint pain and stiffness - frozen shoulder - treated with steroid injection RSCH 6/13

1999: Experienced a single heavy migraine. I had never had one before. I vomited. Afterwards I was debilitated and considered my mental acuity significantly reduced. Ability to speak with normal fluency was reduced, transposing of letters when typing, reduced memory, and vocabulary. After 6 -7 months I feel I had recovered this compromised mental ability. Experienced long term and persistent dull headaches exclusively on left hand side, a corona around the top of the left ear. Sometimes my head would feel hot. I was feeling debilitated and never really running at 100% during the next 7 years. Consulted Neurologist in 1999 - MRIs showed many “high signal foci” . Spinal tap conducted. - no overall conclusion nor treatment. Embarked on long term acupuncture (over 7 years) - not sure if reason for recovery after 7 years. I also had a course of Chiropractic visits and manipulation which eventually diagnosed the atlas/axis vertebrae misalignment many years after the car crash.

Have had "Sciatica type dullness" in left thigh for 10 years or so.

Recent History:
I have not been 100% since 2000. I am still generally fatigued, and feel unrefreshed after sleep.

Feb 2009 I experienced “vascular” pain in the back of my thighs and calves, and in groin. I attended A&E - suspected DVT. D-Dimer test proved negative (although they had trouble getting a result and did the test twice). Paracetamol reduced the symptoms. No treatment.

Days later I awoke unable to fully bend my left knee - as if there was an obstruction or swelling that was blocking the “hinge” from fully closing. Within a month the right knee developed the same problem - I have not been able to fully squat on haunches since. The calves and thighs also felt uncomfortable - I describe it as vascular “zinging”. The strength of the muscles in knees felt compromised. A few times, if I should hold a position for a minute (holding a phone to my ear) my left or right arm muscles would be very painful specifically when I put the phone down... and then recedes within a second or so. The continued aches in upper calves, lower thighs - not sure if vascular or muscular. It comes and goes.

I also had abrasive -type pain on the outside fulcrum of the left knee which became acute.
Nov 2009 I have since had a meniscal tear and large cyst operated on (left knee) The cyst was on the left side of the left knee. No meniscal tear found on the right knee, yet both knees suffered from similar pain. After the operation the knee surgery appeared healed but I still felt pain in both knees. Sometimes I hobble about in pain. It is variable in severity from 1/10 to 4/10.

Jan 2010 My knuckles are sensitive and prone to damage/ pain if knocked. 3 fingers have hard bumps formed on the knuckles (merely from knocking on a door). These are painful and sensitive. (I have had an MRI and Gadolinium trace that ruled out Rheumatoid Arthritis) Jan 2010 Hard nodules developed in palm of right hand preventing flattening of my hand - this is getting much worse by the week. The nodules and knuckle bumps have now been diagnosed as Depuytrens Contracture and Garrod’s pads. - hereditary, untreatable other than with surgery to flatten hand..

April 2011 Undiagnosed dull ache around my heart and tremor/palpitations. Ache extending from under the left nipple to under the left armpit - occasionally to my right of the left nipple.. Comes and goes, can’t be easily replicated, not exacerbated by strenuous exercise. Often painful upon waking. Not tender on skin surface, prodding doesn’t exacerbate, although heavy prodding on ribcage does hurt. Sometimes accompanied by tremor or butterfly feeling to heart (or muscles surrounding heart) - not familiar and certainly does not feel like racing heartbeat. Has persisted for 20+ days - doesn’t relate to pulled muscles from exercise. Stopped July 2011

May2011 Now, both knees still feel compromised and often feel painful - mainly outside face of knee. I have difficulty walking - although once mobile I can run. More recently, similar pain is frequently felt on outside side of both elbows, and top face of right hand. This has now developed to pain of both shoulder joints, and both wrists - ( I can only flex the right wrist 160degrees - normally 180 ). Both hands hurt, and joints of fingers are continuously painful - maybe puffy joints. Cartilage to right wrist “popped out” recently.

August 2011 Pain to all hand joints in both hands. Worse in morning but persists throughout the day. Knuckles feel inflamed and painful to move. In worst cases the knuckle disjoints when flexed.

September 2011 Old Dental amalgams (5) removed. Believed source of mercury and tin toxicity in my body.

Muscles are tight in lower arms, calves, shoulders, neck. All symptoms more acute early morning upon waking. Once moving it appears to ease up a bit, but I am never without pain. Left forearm currently is very painful when pushing with hand. Some days are better than others - there is large variance in degree of pain / discomfort / lack of function.

If I lean on elbows, hand on cheek, pressure in shoulder joint, then within a minute I will have pins and needles in little and third fingers. At night, if I sleep with my hands above my head, or with my arm fully folded at elbow I will experience pins and needles in hands and fingers. I now modify my sleep position to avoid this.

My ankles feel puffy on occasions - socks constricted. Sometimes the skin on my kneecaps also looked hard and scaly. Not so bad now (august 2011)

My neck is stiff and often aches. In 1990 I suffered whiplash - eventually diagnosed by chiropractor as Axis and Atlas issues. I had mild whiplash again in October 2009 (side on impact). I still get pins and needles in little and 3rd finger often when I wake. I am not sure if my neck pain is a general issue associated with the other muscular problems, or if a direct result of the recent whiplash.

Eyesight has deteriorated at an accelerated rate. My prescription is changing more rapidly.

Stomach - occasionally I often feel bloated or pain - upper abdomen. I am unconvinced I am fully metabolising my food. This is less of an issue currently. (April 2011)June 2012

ADMITTED TO A&E and then in-patient with acute upper gastro pain - localised. Diagnosed Pancreatitis. Abnormal pancreatic duct, distended to 8-10mm, with mucus, nodules (IPMN) Endoscopy and ERCP to be carried out soon.

June 2012
Increasing pain to joints - particularly hands, fingers, wrists, knees - now continuous throughout day. Most acute upon waking. Limited in movement of those joints. ?Arthritis. Muscle weakness.

September 13th 2012
Whipple’s operation - Removal of Duodenum, Gall Bladder, Bile Duct and tail of Pancreas to remove IPMN - neoplasm in Pancreatic Duct. Surgery went well and appears to be success.

November 2012
Pancreatitis - hospitalised for 3 days.

May 2013 MRI to scan anastamosis of Whipple operation. Appears normal.

June 2013 Frozen shoulder treated with steroid injection. The previous 4 months had seen increasing pain, swelling and stiffness to all hand joints, wrists, shoulders, elbows and knees. Dupuytrens and Leddehosen pain and progression increasing. Muscle weakness in arms and hands. Muscle pain in calves. Steroid injection eliminated frozen shoulder immediately and reduced most symptoms too.

June 2013 MRI Scan of head, neck, spine RSCH
Report:
MRI Head: The ventricles are normal in size as are the sulci over the cerebral cortex and perimesencephanlic cisterns. There is no sign of subdural collection or other intracranial space occupying lesion but there are multiple high signal lesions in the white matter of each cerebral hemisphere. They are mostly in the subcortical white matter. their appearance is non-specific. Some appear aligned in the plane of the white matter fibres raising the possibility of demylelination. Small infarcts are also a possibility. No evidence of intracranial metastatic disease is seen and there is no sign of maemosiderin from previous haemorrhage on the gradient echo sequence. There is no restricted diffusion on the DWI study.

MRI Cervical Spine

Marked loss of disc height posteriorly C4/5, C5/6, C6/7. There are central disc protusions at each of these levels. The disc protusions are also extended posterolaterally especially C5/6. Osteophytes have developed on the margins of the verterbral bodies next to discs C4/5 and C5/6 and these contribute to the impingement of the lateral recesses at this level with likely impingement on the C6 roots. In addition the AP diameter of the spinal canal is reduced especially c5/6. The epidural fat that normally lies anterolateral of thr dural sac is effaced and there is borderline cord compression. the signal from the cord remains normal. There is no major degenerative changes at the facet joints.

Summary: Non-specific white matter lesions in each cerebral hemisphere. they may represent small infarcts but demyelination is also a possibility. Multilevel degenerative disc disease with protusions in the cervical spine. the disc osteophyte complex is at C5/6 impinge on the lateral recesses and restrict the spinal canal so that there is likely impingement on the roots of C6 and there is borderline cord compression.

October 2013 Radiation therapy to both hands to stem onset of DUPUYTRENS DISEASE. RSCH under Dr. Shaffer. After 5 months it appears to have only a brief pause in progress of disease. Symptoms now developing again by March 2014.

Jan 2014 Muscle pain and joint pain developing week by week. Calves and back of thighs painful - especially when seated. Joints to fingers, wrists, both knees, elbows, shoulders much worse. Pins and needles in little fingers, particular when wrist, elbow or shoulder in wrong position. Left knee appears to have similar pain as in 2010 (prior to meniscal tear and cyst operation) Left femur very painful, often. Neck pain occasionally.

All muscles and joints seem to seize up if kept in one position for time.

June 2014    Dupuytrens disease seems to have got worse over last 3 months. Physical signs of Peyronie's Disease in penis. Now gone

OCT 2014: colegenaise injection -Xiapex to RH pinkie.   Limited success in straighening finger.

 

April 2014 MRI of Pancreas - appears no sign of IPMN 

Jan 2015  MRI of Pancreas - appears possible signs of IPMN 

July 2015  Endosocpy of Pancreas - appears NO SIGN OF IPMN 

DEC 2015: colegenaise injection -Xiapex to RH pinkie for second time