Fiona Anderson
Written - 22/12/2003

I guess one of the first signs of there being anything "not right" about me was way back to when I was a baby - less than a year old. I was a "floppy" baby or more medically put had benign congenital hypotonia (BCH) - low muscle tone.
Motor milestones were delayed, my doctor just putting to down to delayed development due to BCH and I'd "catch up" and was then sent for extreme physiotherapy. I tired easily so it was a long hall but in the end I did manage to crawl (with the techique of putting a scalf under my stomach for support) at 2 1/2 and I walked unaided at 3 1/2. But thats when it became more apparent there was something more than "delayed development".
I fell often and used furniture to get myself back up - which looks very awkward. When I walked I had a "waddling-gait". I was at a General Hospital which as you can imagine didn't have the foggest what was wrong. At birth my unbilical cord was wrapped around my neck more than 3 times which put the idea into people I could have Cerebral Palsy (CP). So I was tested for that. Brain scans, ECGs, X-rays, Bloods you name it. They also thought I may be suffering from a brain tumour? And even at one point Brittle Bones Disease...where they got that from I don't know. Anyway after a very emotionally upsetting examination with students one day my parents decided to take me to a different hospital - a specialist hospital. There my medical notes were transfered and I was sent to see Dr Newton - a neurologist at Pendlebury Children's hospital. Who right away after observation asked if muscle diseases were ever mentioned. So at 4 I was sent for a muscle biopsy and got the diagnoses of Multicore-Minicore Myopathy.
Back then and even now there is little information on MMM and the unpredictability of it is frustrating. This condition has always been "assumed" (if you will) a benign - does not worsen..condition. Which I might add was a foolish assumption as in many of the cases of myself and my friends with MMM it being "stable" has never been the case...even tho the progression rate has great varibility.
I started having vision problems which have gotten worse over the years - have been wearing glasses since I was 4 -... anything more than 60cm away were blurred.
Stairs were a struggle and I got extremely exhaused even thinking about the effort it took to crawl up them. As I got older I could no longer crawl up them - was too big. But walking up them was even more of a struggle. It was decided at 6-7 years I at one point would get a room and bathroom build downstairs. As another year went by my walking became less and falls became more frequent. I used a "larger stroller" for long distances....long distances for me meant from one end of the school/playground to the other. It came to the point I could only manage to walk to the end of the street. I was deteriating and the doctors - even though I was at a specialist hospital ...did not understand.
At 8 I fell in, I had nasty bladder infections 1 after another and flu like symptoms, fatigue and muscle pain. I became bedridden with tiredness and even walking to the toilet was a struggle and I soon was using a walking frame. I was admitted to hospital. The neuromuscular clinical specialist had concerned they had gotten the diagnoses wrong and that I may have an even rarer condition or where talking of months rather than years (life span).
So a second muscle biopsy was preformed with no change in diagnoses. It then became apparent I indeed had a progressive form of MMM.
I started to recover from this bought of mystery time of illness but this left me much more weaker and it was then I was given my very first wheelchair. Manuel one (push) but I did not have the strength in my arms to prepel. The Muscular Dystrophy Association raised money for me to have a powered wheelchair which I recieved when I was 9.
At this point I was only walking a few steps during physio sessions in my walker then my legs would give way. I wore a calliper on my right foot as those years of struggling with the stairs had my foot turned in.
The extention was still not built at the back of our home so I was forced to sleep in the living room for a year - I could not manage them anymore - But it was worth the wait.
At 11 I had surgery to correct my foot (Foot Reversal Surgery)...first they straightened it and left a wire in to maintain it..then another surgery to remove that. In all I was casted for 5 months. My foot when the cast was removed still seemed "deformed"...but they did the best they could.
All was well from then on till we had another down fall at a check-up when a junior doctor (having studied the affects of neuromuscular disorders) wanted to have my back x-rayed. My main doctor said he felt no need it looked nice a "straight". I think you can already guess he was wrong. I did have slight scoliosis (kyphosis).
I soon started high school at 12. It was then my back seemed to take tool. Bracing wasn't an option so spinal surgery I was now on the list for. As the years went by and still no date (stupid NHS waiting lists) I began to feel the effects of having kyphosis. It did get the point some mornings I couldnt bring my bed to sit up - I always used a powered bed to get sitting up - and some days I couldnt lie down it was exceptionally painful. My hip would rub against my rib at one sit and I had a few frightening experainces where my chest would go tight, breathing hurt and was difficult that something was blocking so I breathing heavier to break it but it wouldnt...it would evenchally ease. I told the doctor about this but without investigation he put it down to trapped nerves in my back? Still not sure about that myself.
I finally got a date for my surgery when I was 14 (about a year ago). Just in time they said I was struggling with breathing and as a result of the Myopathy my lungs are now weakened. I was in for 3 weeks. I was in threatre for 16 hours or more. After comming home I was bedridden for a year due to pain or my back and hip - hip became dislocated due to the surgery. Emotionally I was run down. I was sick and tired of all this and was i admit now depressed with the restriction. Social services previded me with my own laptop to work from my bed which was great of them and evenchally - trying to aviod hip surgery - I got a tilt in space wheelchair a few months ago. I am at school part time mostly due to getting used to it again and fatigue.
I have been attending the local hospice for a year now. Thats were I first met other teens with MD which was a good experiance. I do require care with most physical things bar typing and feeding and there was really no other place with the right medical care/experiance.
Alot of my doctors still have there concerns about my health i.e A few years ago I had a heart murmer which they are montering. Pain management has improved...I now take Feldenne. I still have vision problems and often have to ask my carer to dictate things from the blackboard to type but theres really nothing that can be done as they said it is a affect of MMM. The fatigue, morning nasuia, headaches, night sweats/odd fevers and things dont help but again nothing I can do about it. I cannot weight bare at all but I'm not fussing about that. I have my life to live and as I explained to the physios I don't want to live it trying to create something I had before when I can be doing things - education wise - and living my life. I don't know what will come now and if I'll develope anymore of MMM's affects. I'm not worried what happens happens and I'll cross that bridge when I come to it. But for now I'm ok and thats what matters...live in the moment not in the past n not too far in the future. Take each day as its given and be thankful.
God bless everyone
Fiona

August 2005

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