Searching the Internet
When I first began to check this out on the Internet I was disappointed to find very little that was helpful except that it was considered “a rare disorder.” Under a heading of Camptocormia, there was a photo of a Japanese lady bending forward, and information to the effect that even just resting her hands on something was enough to help her stand upright. The abstract started by informing us that axial myopathy (AM) is a rare neuromuscular disorder in which involvement of the spinal muscles manifested a bent spine and/or drooping head as leading clinical features. The disease was described as being “slowly progressive.” Then followed mention of EMGs and a “muscle biopsy specimen.”
"Kyphosis": What On Earth Could That Be?
I was not ready to give up, and, after hours and hours of further searching I read that axial myopathy “is an associated sign of several neurological disorders and vertebral degeneration diseases; a rare neuromuscular disorder which causes a bent spine and/or drooping head as leading clinical features.” But then came this: Experts have concluded that it may be much more common than previously thought, because gradual progression of cervical kyphosis — which the Mayo Clinic defines as a forward rounding of the vertebrae in one’s thoracic spine, and Wikipedia describes as ‘hunchback’— may unfortunately often just be accepted as a feature of normal aging. The first symptoms seem to be difficulty in keeping the trunk and head in an upright position. Tests had shown the disease to be slowly progressive.
My friend’s history, after immigration to Canada, seems to have been normal enough, except for an unfortunate incident which occurred while she was planting flowers in a flowerbox on her deck and accidentally pricked her hand with the garden scissors, was infected with a fungus, thus contracting a persistent cryptococcus informants infection. Most infections with this organism are asymptomatic; however, after penetration of the fungus, pulmonary, skin, or central nervous system, disease may occur. Cases of myositis usually occur in the setting of “disseminated cryptococcal disease” but focal infections within the muscle have been reported and this was apparently what happened to her. Some cases, I have since learned, have, in addition, involved cellulitis and necrotizing fasciitis (“flesh-eating disease) in addition to myositis, and she was fortunate in that an alert hospitalist in her local hospital spotted the onset of this and took the right steps to fight it.
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.'