RE: New Member from Scotland - Long post!

[Guest guest]

Hi Libby

Welcome!! I am glad you have joined us and that you will find here the

support you need.

It sounds like you are having a very rough time of it. About the only

thing I can say is similar is that looking back, I had symptoms as a

child. It is impossible to know abnormal when you have never know

normal.

You might want to add amino acids in addition to the organic acids and

pyruvate in addition to lactate if they are not done.

Good luck fighting the system. We don't have your systom of medicine,

but our managed care plans are very restricting in most cases. The

insurance company and primary care doctor decide who and where you

will be seen and what medications are approved.

laurie

>

>

>

> 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

>

>

>

>

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail

> is entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

What a story! Thanks for sharing. I'm glad you found the group and hope you

can get some definite answers soon. Reading about your health care system

makes me thankful for ours, flawed and imperfect as it is. I've never heard

of anyone in the US waiting 8 weeks for an " urgent " MRI. I know a group of

researchers who are actively working on issues in statin myopathy and they

strongly believe that statins can " uncover " existing metabolic muscle

diseases. They have gathered evidence to this effect and will be publishing

later this year. Stay tuned.

Barbara

_____

From: [mailto: ] On Behalf

Of libbyextra

Sent: Wednesday, April 27, 2005 3:05 AM

To:

Subject: New Member from Scotland - Long post!

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

Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail

is entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with

their physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

_____

[Guest guest]

A big thank you for the warm welcome and suggestions for more tests

and most interestingly about the researchers looking at isues in

Statin Myopathy etc.

I have an appointment with the local Physician at the end of May and

will be taking a list with me..

I am growing so weary of the search to get to the bottom of my muscle

problem. Its so perceptibly progressive and is quite scary along

with all the practical issues surrounding my decreasing abilites.

Anyhow, I am glad I can join with you folk here and look forward to

meeting more of you soon.

Libby

> What a story! Thanks for sharing. I'm glad you found the group and

hope you can get some definite answers soon. Reading about your

health

care system makes me thankful for ours, flawed and imperfect as it

is.

I've never heard of anyone in the US waiting 8 weeks for an " urgent "

MRI. I know a group of researchers who are actively working on issues

in statin myopathy and they strongly believe that statins can

" uncover "

existing metabolic muscle diseases. They have gathered evidence to

this

effect and will be publishing later this year. Stay tuned.

Barbara

[Guest guest]

Hi Libby

Pleased to meet you..I am from the other side of Hadrians

wall ...The NHS is slow but it does get there in the end ...the

trouble is that the Docs have so much to wade through these days

with so many possibilities until symptoms really begin to

manifest...I am also waiting with bated breath for the Statins

report later this year..I was on Simvastatin when I became ill...now

taking a low dose of Avorstatin or in deference to our

American friends Lipitor..

Gillian

>

>

> 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

[Guest guest]

We in the U.S. take for granted our health care system, and say how

bad it is, but I haven't heard of those kinds of waits for testing in

the U.S.

I wonder how many of us have had MG (or another " more common "

neuromuscular disease, Parkinson's I know people have mentioned) as a

potential diagnosis, I can think of about five off-hand that have

had/have MG, and there may be more...

Take care,

RH

>

>

> 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

[Guest guest]

Hello Barbara, may I ask if you would share information about the

group of researchers studying statins and myopathy? I am currently

putting together a " citizen's petition to the FDA " asking for after

marketing studies on statins and their relationship to

neurodegenerative diseases--Parkinson's, amyotrophic lateral

sclerosis and alzheimer's. the underlying pathology in these

diseases is linked to mitochondrial dysfunction leading to oxidative

stress. there exists credible scientific evidence associating the

depletion of coq10 and dolichols by statins and the etiology of

these diseases. Dr. Beatrice Golomb, MD, UCSD

researcher/neurologist is currently compiling reports of side

effects from statins self reported by patients; she is also

studying effects of 2 different statins and their respective

effectiveness. I also know of Dr. , interventional

cardiologist at Scripps Mercy hosp in San Diego who is studying what

he terms " statin induced cardiomyopathy " , as is Dr. Lansjoen

in Tyler, Texas. thanking you in advance for any information. (and

for your assisatnce in the past when i first joined and had no idea

how to navigate the board to find the old files!) mauade

> What a story! Thanks for sharing. I'm glad you found the group and

hope you

> can get some definite answers soon. Reading about your health care

system

> makes me thankful for ours, flawed and imperfect as it is. I've

never heard

> of anyone in the US waiting 8 weeks for an " urgent " MRI. I know a

group of

> researchers who are actively working on issues in statin myopathy

and they

> strongly believe that statins can " uncover " existing metabolic

muscle

> diseases. They have gathered evidence to this effect and will be

publishing

> later this year. Stay tuned.

>

>

>

> Barbara

>

>

>

> _____

>

> From: [mailto: ]

On Behalf

> Of libbyextra

> Sent: Wednesday, April 27, 2005 3:05 AM

> To:

> Subject: New Member from Scotland - Long post!

>

>

>

>

>

> 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

>

>

>

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements

contained herein

> are not necessarily those of the list moderators. The author of

this e mail

> is entirely responsible for its content. List members are reminded

of their

> responsibility to evaluate the content of the postings and consult

with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who

sends one is

> automatically moderated or removed depending on the severity of

the attack.

>

>

>

>

>

> _____

>

>

[Guest guest]

I just wanted to say that I was examined by Dr. months

back. What a great cardiologist.

I've never taken statins, but I had a very abnormal cardio/pulmonary

excercise test. He understood the metabolics behind the symptoms.

That in itself seems to be pretty rare (the understanding). I

attempted to follow up with a local cardiologist - thinking that I

could get routine echos, EKGs - done close by and follow up with Dr.

if they find a problem. (Both my mom and maternal

grandmother had heart failure. I have a CoQ10 deficiency. A

carnitine deficiency. I guess I assumed close monitoring was

a " given " considering my background. The local cardiologist was

totally thrown. Didn't want to have anything to do with my case and

suggested I go back to San Diego if I need follow up.

How frustrating. I don't travel well.

Maggie

> > What a story! Thanks for sharing. I'm glad you found the group

and

> hope you

> > can get some definite answers soon. Reading about your health

care

> system

> > makes me thankful for ours, flawed and imperfect as it is. I've

> never heard

> > of anyone in the US waiting 8 weeks for an " urgent " MRI. I know

a

> group of

> > researchers who are actively working on issues in statin

myopathy

> and they

> > strongly believe that statins can " uncover " existing metabolic

> muscle

> > diseases. They have gathered evidence to this effect and will be

> publishing

> > later this year. Stay tuned.

> >

> >

> >

> > Barbara

> >

> >

> >

> > _____

> >

> > From:

[mailto: ]

> On Behalf

> > Of libbyextra

> > Sent: Wednesday, April 27, 2005 3:05 AM

> > To:

> > Subject: New Member from Scotland - Long post!

> >

> >

> >

> >

> >

> > 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

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > Medical advice, information, opinions, data and statements

> contained herein

> > are not necessarily those of the list moderators. The author of

> this e mail

> > is entirely responsible for its content. List members are

reminded

> of their

> > responsibility to evaluate the content of the postings and

consult

> with

> > their physicians regarding changes in their own treatment.

> >

> > Personal attacks are not permitted on the list and anyone who

> sends one is

> > automatically moderated or removed depending on the severity of

> the attack.

> >

> >

> >

> >

> >

> > _____

> >

> >

[Guest guest]

Hello Maude, I do remember you and the emails we exchanged. Unfortunately, I

can't share any details of this study because it has not been published yet.

I was given a pre-publication copy but was asked not to give out details

until publication. That may be a few months. Until then, mum's the word.

Sorry.

Barbara

_____

From: [mailto: ] On Behalf

Of mauderegan

Sent: Wednesday, April 27, 2005 5:27 PM

To:

Subject: Re: New Member from Scotland - Long post!

Hello Barbara, may I ask if you would share information about the

group of researchers studying statins and myopathy? I am currently

putting together a " citizen's petition to the FDA " asking for after

marketing studies on statins and their relationship to

neurodegenerative diseases--Parkinson's, amyotrophic lateral

sclerosis and alzheimer's. the underlying pathology in these

diseases is linked to mitochondrial dysfunction leading to oxidative

stress. there exists credible scientific evidence associating the

depletion of coq10 and dolichols by statins and the etiology of

these diseases. Dr. Beatrice Golomb, MD, UCSD

researcher/neurologist is currently compiling reports of side

effects from statins self reported by patients; she is also

studying effects of 2 different statins and their respective

effectiveness. I also know of Dr. , interventional

cardiologist at Scripps Mercy hosp in San Diego who is studying what

he terms " statin induced cardiomyopathy " , as is Dr. Lansjoen

in Tyler, Texas. thanking you in advance for any information. (and

for your assisatnce in the past when i first joined and had no idea

how to navigate the board to find the old files!) mauade

> What a story! Thanks for sharing. I'm glad you found the group and

hope you

> can get some definite answers soon. Reading about your health care

system

> makes me thankful for ours, flawed and imperfect as it is. I've

never heard

> of anyone in the US waiting 8 weeks for an " urgent " MRI. I know a

group of

> researchers who are actively working on issues in statin myopathy

and they

> strongly believe that statins can " uncover " existing metabolic

muscle

> diseases. They have gathered evidence to this effect and will be

publishing

> later this year. Stay tuned.

>

>

>

> Barbara

>

>

>

> _____

>

> From: [mailto: ]

On Behalf

> Of libbyextra

> Sent: Wednesday, April 27, 2005 3:05 AM

> To:

> Subject: New Member from Scotland - Long post!

>

>

>

>

>

> 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

>

>

>

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements

contained herein

> are not necessarily those of the list moderators. The author of

this e mail

> is entirely responsible for its content. List members are reminded

of their

> responsibility to evaluate the content of the postings and consult

with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who

sends one is

> automatically moderated or removed depending on the severity of

the attack.

>

>

>

>

>

> _____

>

>

[Guest guest]

Maybe you could ask your PCP to put you on a schedule for

echocardiograms, etc., done at a hospital instead of at the local

cardiologists. The local cardiologist would have to pay attention if

he has to read them, it's not really his choice (or a cardiologist at

the hospital would read them).

I am lucky that some of the local doctors (not the local neuro

unfortunately) are a combination of knowledgeable and open-minded

enough to treat me and find the best solution for my needs. I've had

a " baseline " stress test and echocardiogram, and they know that I'm

relatively okay, but have good handles on my minor but not negligible

arhythmmias.

Take care,

RH

> > > What a story! Thanks for sharing. I'm glad you found the group

> and

> > hope you

> > > can get some definite answers soon. Reading about your health

> care

> > system

> > > makes me thankful for ours, flawed and imperfect as it is. I've

> > never heard

> > > of anyone in the US waiting 8 weeks for an " urgent " MRI. I know

> a

> > group of

> > > researchers who are actively working on issues in statin

> myopathy

> > and they

> > > strongly believe that statins can " uncover " existing metabolic

> > muscle

> > > diseases. They have gathered evidence to this effect and will

be

> > publishing

> > > later this year. Stay tuned.

> > >

> > >

> > >

> > > Barbara

> > >

> > >

> > >

> > > _____

> > >

> > > From:

> [mailto: ]

> > On Behalf

> > > Of libbyextra

> > > Sent: Wednesday, April 27, 2005 3:05 AM

> > > To:

> > > Subject: New Member from Scotland - Long post!

> > >

> > >

> > >

> > >

> > >

> > > 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

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > Medical advice, information, opinions, data and statements

> > contained herein

> > > are not necessarily those of the list moderators. The author of

> > this e mail

> > > is entirely responsible for its content. List members are

> reminded

> > of their

> > > responsibility to evaluate the content of the postings and

> consult

> > with

> > > their physicians regarding changes in their own treatment.

> > >

> > > Personal attacks are not permitted on the list and anyone who

> > sends one is

> > > automatically moderated or removed depending on the severity of

> > the attack.

> > >

> > >

> > >

> > >

> > >

> > > _____

> > >

> > >