New Member from Scotland - Long post!

[Guest guest]

Hello Everyone,

I am from Scotland and have been struggling with a problem with my

muscles since Easter last year.

The first I knew there was something wrong with my muscles was after

being on only 10 days of a Statin (cholesterol lowering medication)

and virtually lost the strength in my arms while driving the car and

developing, almost immediately, double vision and a nystagmous. I

also was very wobbly walking at this point.

My family Dr ruled out a stroke the day this occured and felt it was

a serious reaction to teh statin which were of course stopped. It

was hoped within a week or so my strength would return and that would

be the end of it. Unfortunately this did not happen a and I could

sense I was gradually getting weaker and the weakness was more

generalised and I was having increasing difficulty walking without

holding on to things and could not see to read or focus on anything.

As is the way with UK referrals to Neurologists, it can take 18

months to see one and my family Dr made valiant efforts to ge tme

seen by a physician at our local Infirmary. The physician said

within moments of examining me there was something seriously wrong as

I could not stay balanced to walk or get up from a squat. Her

initial feelings were that it was a brain tumour. She took enough

blood to do every autoimmune, metabolic test and anything she could

think of to try toget answers. An MRI scan was asked for unrgently

but still took nearly 8 weeks to get done. Everything was negative.

Nearly 3 months on and I was continuing to get weaker and less able

to manage running our family home. I noticed I was now getting

fasiculations (fine twitching of my muscles) and spasms in all the

active muscles I would use, especially if I overdid it.

I was then seen by another physician who wanted an emg done urgently

and again the wait in our free health service (we pay for it thru our

taxes) meant an 18 month wait or more. We asked my family Dr to

arrange it privately and it was done the next week and has been the

best money we have ever spent. It showed immediately that I had a

serious ongoing myopathy and the neurophysiologist who did the nerve

conduction studies said he was referring me for admission under the

care of Scotlands lead specialist in neuromuscular disease at the

Regional Neurology Unit. Time was marching on as were my symptoms and

by the time I was admitted to hospital 6 months had passed and I was

so weak my breathing was beginning to be affected also and I was

getting short of breath on any exhertion.

A month in hospital gave me the opportunity to rest completely and

the neurology staff the time to do every other test not previously

done, including a repeat MRI. Everything was negative. I was still

getting weaker. I even had a a 'respiratory incident' while an

inpatient having have oxygen for a time. My pulmonary functions were

checked and tho a struggle to do were 'OK' thankfully.

So at the end of this month the neurologist said he was leaning

towards the diagnosis of a form of Myasthenia Gravis. He was

reluctant to treat it or do the usual tensilon test as I had been so

sensitive to the Statin and feared causing further damage to my

muscles. I was so dismayed.

The only thing not done at this time was a muscle biopsy and that

because it had to be organised by a specialist neurosurgeon. I would

need to go home and wait until NOvemeber when I would eventually have

it done. It was not a 'walk in the park' and the anaesthetic tho

light created problems with my airway and I had to use oxygen for a

few days after. I was told the the initial results showed Pychnotic

cells within the muscle fibres and essentially my muscle were either

dead or being damaged. I received a visit from a Paediatric

Neuorlogist with an interest in MD. He questioned me extensively

about my physical ability during my youth and a picture began to

emerge showing a problem that had been in the background all along

and accounted for a number of problems in the recent decade that had

not been attributed to muscle issues. My neurologist then sat my

husband and I down and explained that things did not look good, they

were leaning away from myasthenia (tho didnt exclude it) and now felt

I had a form of Limb Girdle Muscular Dystrophy. It would appear that

the Statins had somehow made the sypmtoms become apparent. He said

there was no cure or treatment he could offer the only hope being

stem cell therapy in the future and to avaid any medication or

vitamins at all. We need to now wait for exhaustive analysis of my

blood and muscle for gene typing and specialist tests.

That was 6 months ago and I have continued to decline at a

perceptible rate to the point of having to use begin using powerchair

and adaptations being made to our home to try to function with the

limited strength I have remaining.

On the bright side, I do now have prisms in my glasses which have

improved my vision most of the time and I can read some as a result.

I have wonderful occupational and physiotherapists who are looking

out for me and helping in anyway possible.

The hardest part has been the enormous impact on my family,

husband,two young sons aged 12 and 10 and my elderly parents. I am

on that rollercoaster of denial, anger, depression and acceptance

from day to day. I am trying to reinvent myself and continue to be a

useful part of our family and even community.

Since joining the MDA I have discovered I am not along in my battle

with a muscular disease and many have come forward to suggest new

avenues to check and test to consider to further focus on what is the

matter with my muscles.

I did in recent weeks get some good suggestions from the guest

speakers at the MDA Mito Chat. I could also tell you a lot about the

wonderful Hoodlum/Kirstie, but am sure you already know what a help

and friend she is! To that end I will be tested for Lactate, Organic

and Q10 levels in the near future.

Sorry for making this so long but it is a fairly complete picture of

what has been going on with me apart from going into more detail

about my symptoms and how it affects my day to day living.

I wonder if any here have had a similar set of circumstances that led

to their diagnosis?

Libby