I'm probably the last person to be writing about this because I don't claim to be an authority on any particular condition — except perhaps hemochromatosis and the searing reflux suffered when I’ve devoured too much chocolate at bedtime! I have, however, embarked on the study in order to try and help a very dear friend (like me a South African expat now living in Canada) understand how and why she came to have this awful condition. I have decided to do this in two ways: first, as a physician would, I’ll try to construct a case history of all that has befallen her since she was a child. Then I'm going onto the Internet to see what I can find there.
Background and Case History
Evidently she was a very healthy, active child. She tells me that her father, a Latin scholar, had a nickname for her which meant “Happiness" or “Happy." Her sister, who was 10 years older than she was, would tease her active little sibling, scoffing that this moniker was rather deserved because, like Felix the Cat in the cartoons of the day, she ‘kept on walking!’ which, from all accounts, was a gross understatement. She would always rather run than walk!
Their father died when my friend was six, and her sister, who was really a very loving and caring person, became the chief breadwinner but was not always able to have the young one with her. At one stage in her life, the child, then 11 years old, was left to stay with an aged friend of the family in a little town called Aberdeen, in the dry Karroo area of South Africa, where she was lonely enough to join almost every Sunday School in the place so that she would be entitled to attend picnics — where she would inevitably end up with numerous boxes of handkerchiefs, won for sprinting!
Eighteen months later, after joining her sister in Cape Town, she was enrolled at a good school, where she was an enthusiastic gymnast excelling in “vaulting the horse,” rope-climbing, and running, until one day, about three months later, she began to hobble, and an observant teacher noticed that her young student’s left knee was grossly swollen. A doctor who examined her recommended three months of bed rest, at the end of which she returned to school; but she was hardly there when the other knee began to swell. Other disquieting symptoms prompted the doctor to refer her to an eminent specialist at the famous Groote Schuur Hospital.
Article comments
1 - Harry Blount
Perhaps the time bomb had been ticking all the time.
How sure are you that this is not due to that anterior spinal fusion, which might finally be catching up on her?
I have just been reading that when surgery is done near the spine and spinal cord there can be serious complications “which could involve subsequent pain and impairment.” Worst of all, the possible need for additional surgery.
2 - Melinda Terblanche
You have a point but, having read through the evidence more than once, my husband and I can’t agree with you. We have friends who have suffered as a result of unsuccessful spinal surgery, but she seems to have been fine for many years Surely there would have been signs of that long before now.
3 - Frits Gruber
I put my money on the fungus thing which "can cause cellulitis and necrotizing fasciitis." I have a cousin who had “flesh-eating disease once, and the doctors had to keep operating,trying to cut back damaged tissue, but eventually he had to be put into a hyperbaric chamber to save his life. Now I can't help wondering how much damage that infection did to this lady. I don't know how these things work so I'm just guessing that possibly a fungus like that can eat away at other parts (perhaps even muscles) and maybe before treatment commenced some damage had been done to hers.
Of course this is a very weird point of view, but I found this a truly sad story and I sincerely hope that, if it is not too late, she can be helped
4 - Mary Fraser
Could it possibly be due to amyloidosis? I’m just guessing and perhaps I have just watched too many episodes of “House,” but that word comes up so often in the series that when I was doing what you have done - researching axial myopathy - and came upon the word amyloidosis in connection with it I couldn’t help wondering
5 - Harry again.
I doubt it. Could find nothing about amyloidosis to support this.
6 - Selma Graham.
Talking about "House," this "forum" is beginning to sound a lot like his program - when all the members of his team get together and comment on a difficult case.
That "inborn" congenital defect could well have been the cause. Sometimes even well-built buildings can collapse after the passage of time.
How fortunate that the anterior fusion seems to have given her many years of activity.
7 - Lavonia
Certainly not a good situation to find yourself in, but how I envy her that doctor! The one she has now. If I did I’d also put him on a pedestal. Mine is of the first genre. Never listens…doesn’t care worth a darn …never reads test results… and I swear that, after five years, he still wouldn’t recognize me if he saw me in the street!
8 - Miriam Pickard
I have often thought about this lady's situation and keep coming back to this article in case there's an update. Tonight I have spent hours researching muscle diseases and I was interested to read in an article on the Net that MYOSITIS can be caused by a fungus, and this has set me wondering.
If a fungus has been known to cause MYSOTIS, couldn't this person's MYOPATHY be due to that fungus she got from pricking her hand with the garden scissors?
9 - Marie Warder
Postings 4, 5, and 6.
Thank you, Mary, for your suggestion that Amyloidosis might be the root cause and thanks to those who commented on it. I have been doing a great deal of research - triggered by these comments - and hope to post an article in the very near future.
10 - Marie Warder
Well, it seems that the 'mystery' has been solved at last!
I have written at length about “pseudo gout” and the crystal deposition that causes it. Well, very detailed X-Rays have now proved that the lady in question is riddled with it �" to the extent f even having more than one minor fractured in her spine. The anterior spinal fusion in her spine at the age of 39, probably gave way on the day when she carried that very heavy parcel across to her car at the shopping mall.
Little can be done for her as even her wrists are now compromised.
Thank you for ALL the comments!
11 - Fritz Gruber
THIS MIGHT WELL BE THE ANSWER~
Infectious myositis -- an acute, sub-acute, or chronic infection of skeletal muscle. Once considered a tropical disease, it is now seen in temperate climates as well. Viruses, bacteria (including mycobacteria), fungi, and parasites can cause myositis.
She reportedly suffered brutally from the fungus that entered her body when she accidentally stuck the garden scissors into her hand about three years ago, and I now recall that, in her teens, she was very sick with what is now known as “Tick bite fever” after riding horses bareback - disobeying her mother ( and the local cop!).
This does not mean that she is infectious - but the tick was!
12 - Elaine Murray
Thank you all for your responses. I write on behalf of my friend to let you know that she is no better but keeps hoping, and finds your interest very encouraging.
13 - Marie Warder
This patient most certainly does not have axial myopathy.
I would rather make a calculated guess that she has:
Calcium Pyrophosphate Dihydrate Crystal Deposition Disease
Or
“CPDCDD” from which I personally suffer.
Chondrocalcinosis, also known as ‘Pseudo gout’ and sometimes ‘acute arthritis’, is caused by CPPD crystal-induced inflammation, and is nearly as common as ‘real’ gout �" which is caused by uric acid crystals. Like it, it causes what many have described as ‘excruciating’ pain, when it flares up. CPP stands for ‘Calcium Pyrophosphate Dihydrate Crystals, and another name for Chondrocalcinosis or Pseudo Gout is ‘Calcium Pyrophosphate Dihydrate Crystal Deposition Disease.’ (One only has to think of fireworks as ‘pyrotechnics’, to sympathize with anyone who suffers from this!)
What Is It? - A condition that causes pain, redness, heat and swelling in one or more joints, eventually resulting in damage to the affected joints. (Mostly those of the knees, thumbs, wrists, and the one between the pubic bones in the front of the pelvis.) Sufferers will know at once what is meant by the ‘painful handshake’, as one of the earliest symptoms is ‘arthritis’ of the thumb joint and the knuckles of the first and second fingers. This telltale swelling is a classic manifestation, and, if I had my way, the knuckles of every person afflicted with ‘arthritis’ would be examined for possible Hemochromatosis.
What Causes It? - Deposits of calcium pyrophosphate dihydrate crystals in a joint, which weaken the cartilage and cause it to break down more easily. The presence of these tiny CPPD crystals in the joints, and the body's reaction to these crystals, creates often agonizing inflammation as ‘A’ cells rush to attack the crystals. A fruitless exercise, as the crystals are indestructible, and, during one of the attempted ‘A’ cell rescue operations, they lose the battle �" causing the patient’s immune system to be temporarily compromised, as a result.)
Often dismissed as ‘arthritis’, CPDCDD has been reported, by many homozygous people with whom I have worked, (i.e. those who carry two genes) as having been the presenting symptom of the onset of Hemochromatosis. Over the years I have learned, however, that that it is even possible for Heterozygotes (one gene) to be afflicted. I have known some with knees so swollen that the fluid has had to be aspirated. Physicians do not readily prescribe oral cortisone for the treatment of CPDCDD, but, from my own experience, I can tell you that an injection into an afflicted joint can work wonders!
HOW CAN THIS AFFECT MUSCLES?
A substance called 'apatite' (a mixture of various calcium phosphate crystals) forms the normal mineral in human bones. In healthy adults apatite occurs only in our bones and teeth and there are no calcium crystals elsewhere.
Extract taken from my book: "The Bronze Killer."
14 - Vernon Bush
I still maintain that, in the case of this lady, either the possibility of malnutrition when she was in her early teens - together with or the virus she picked up when pricking her hand with the garden scissors - are at the root of her problems.
15 - Marie Warder
Thank you for your comment, Vernon, but now, when she is almost totally crippled -- to the extent that she even finds it hard to holed a teacup -- she has finally been diagnosed with chondrocalcinosis.
16 - Marie Warder
Apologies for the typo in the previous comment. 'Holed' should have been 'hold.'