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Why Is everyone so afraid

#1

Lets just say that I have been diagnosed with some kind of brain chemical imbalance disorder....its seems everyone is agreed on that...they might decide what flavour jam they want hopefully sometime in the near future.
Over the past couple of days I've been trying to work out how so many of the symptoms of PD have happened in such a short space of time.
I have had this sneaky suspicion that it could have been due to the cocktail of medicines I am taking for various conditions but the main one associated with the heart.
Like Sherlock Holmes; I've been looking at all the medication I am taking  and how long I have been taking them for...and there is only one drug that is a relative newcomer....that drug is simvastatin.
Initially I was prescribed this drug after I had angina....I never took this one because my cholesterol level was only 4.8 even today it is only 5.2 ( my dietary changes may have lowered it since then) however, I was persuaded to start taking simvastatin for its supposed other benefits...I use that word supposed with caution because we are individuals and should not be treated as marketing tools or guinea pigs so any of the benefits will only relate to the individual taking them. I relented and started taking it in November.
 I already had developed a slight tremor and it was possible that it was to February but by then it was much more noticeable especially in my left hand.
I mentioned this to my GP not as a principal reason for my visit; I said that I though it might be the early sings of PD;it was put down to just getting older and benign tremor...I had to insist that he mark it in my records, just so that in future if it was to develop into PD or any other disorder that the record would show a concern and give a timeline for the start of the symptoms.
About 14 weeks ago I began to notice other symptoms...such as a cramp in the muscles of my right arm...which has never gone away away and involuntary movements; mainly in the torso...that is still the case...always at rest....In the neck, in the leg and in the larynx...and alarmingly in the jaw...three times I have bitten my tongue. I was also suffering some psychological problems. hyper anxiety almost to the point of paranoia. I asked to be put on citalopram; I knew the root cause of the anxiety but was concerned that I needed to reduce the stress levels, the increased usage of my GTN spray was testament to that.
Once again I spoke about my concerns only this time I mentioned that my son a Ph.D. in Chemistry had read an article about problems associated with taking statins with diltiazem. Unfortunately my GP showed little interest....however, two weeks later I received a letter from my GP notifying me the he was reducing the dosage of simvastatin from 40 mg to 20 mg.
With the symptom's becoming more problematic...the greatest being the new development of balance instability...at this point I had to insist that I see a specialist. An appointment came for the 25th October to see a geriatrician...at last I was going to hopefully get some answers after all.

 

Meanwhile I needed to have a look and see what I could unearth with regards to statins and PD.
Check yourselves there is nothing to support a conclusion either way. The tool that is always used is statistics...we are people not numbers and so it has always been said... we are individuals.
So while you have a company like pfizer turning over colossal amounts in profit. Independent research to the contrary will always find its opponents influenced by that kind of power not to suppress that research but to swamp it.

My greatest concern is that if this is happening to me how many others has it happened to and how many more are at risk in the future.Especially as this drug is prescribed to people who might not necessarily need it.

I wanted so much to bring this to the attention of the masses but nobody seems to be willing to take on the might of pfizer.

My answer to all of them is this      REMEMBER THALIDOMIDE

Peter

#2

Hi Peter

Good Luck with your appointment i hope you get some answers  when you see the geriatrician , the main problem is a gp really does not have much experience in PD so a more accurate diagnosis would have to come from a specialist in movement disorders or a geriatrician

I had the same experience i had had a tremor for a few years now but my gp always put it down to my being anaemic then when my anaemia was cured it was put down to my thyroid problem even though my thyroid is now well controlled and has been stable for the last 4 years since having radioactive iodine treatment , then i went to my gp because of  stiffness when getting up from a chair i insisted i should not be feeling like it did at only 46 yearrs of age  again she said you do get  joint problems when you have a thyroid problem , gradually over the next 6 to 8 months i noticed i had developed a painful left shoulder and neck  and my tremor which was more pronounced on the left  was getting worse add to that a feeling that my body was shaking from the inside  i again went back to see a different gp who did all the usual suspects first  retested my thyroid ,and tested for diabetes and also for inflammation they all came back clear so she said it was more than likely to be neurological  she never mentioned PD  but what she did say was she was not convinced it was essential tremor as i had a resting tremor  ultimately a visit to the neurologist in August  confirmed  PD

 

I was prescribed Simvastatin  a few years ago  as i had a small degree of reverse blood flow through my heart causing a murmour  i felt the Simvastatin did more harm than good i felt terrible when taking them  so i stopped taking them  never understood why my gp prescribed them when my cholesterol levels were ok

All the best with your appointment Peter

 

Michelle

#3

Hi Michelle...my heart goes out to you. There are sometimes when you wish that you were the only one to experience the same difficulties, both with the medication and getting GP's to  even consider PD as a possible cause. No wonder they say that paranoia is one of the symptoms of PD. I don't think its paranoia...it just feels like a conspiracy between Gp's and the Pharmaceutical companies just to stay in business.

Happily now Michelle...this morning ...I had an emergency consultation with another GP at the practise.
Initially it was as if he too were reading from the same script as the last one....it seems as though it is common practise for them to make judgments on referrals based solely on the motor elements of the disease, rather than take them as a whole.Eventually he was satisfied enough to agree to a referral only this time he would do his utmost to bring the appointment forward and to a neurologist.
I wish someone could enlighten me as to the prognosis....Am I right in thinking that once there has been the association between dopamine levels  and Parkinson's it is an irreversible process?

Thank you again Michelle for your kind words but more importantly there is an element of your symptoms, that I also suffered from but since it had gone away a couple of months ago I never thought to link it.
The stiff neck and collar muscles. I lost my sense of smell some 2 and a half years ago....I put that down to having nasal polyps.

I am heart broken to think that there is the potential for thousands if not hundreds of thousands of people prescribed simvastatin who then go on to get PD.

I will keep you posted on the outcome

ps Michelle I mentioned a possible benefit how ever remote of having PD

If you send an email to (email address removed) I will return with a synopsis and the first three chapters of the book I am writing. Any feedback would be appreciated.

 

Peter

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#4

HI Peter

 

I am by no means a expert i was diagnosed in August  as having PD at 47 and my mother who is 76 was diagnosed with PD earlier this month so what i have learnt from looking round the forum and doing some research  and having  consultations with good old Dr Google is once the cells die its irreversible but there are a lot of drugs out there that can help replace some of the dopamine that is  lost

I think one of the things that can be associated with PD is a loss of your sense of smell indeed my neurologist did ask me if my sense of smell was affected in my case i tend to smell things that are not there but then again i do like to be different , i must admit the shoulder and neck pain was becoming a problem for me , sleeping in bed on my left side was a definite no go to painful and uncomfortable , i have noticed i seem to be getting the same feeling in my right shoulder now so i guess it is the PD progressing   my neurologist started me with Azilect  which do help  but i have noticed  they wear off on a evening and i am back to being stiff and achy at bedtime  i do not see my neurologist till november so i am hoping he will add something to the Azilect to boost it

The prognosis for PD

This is what my neurologist said to me , my first reaction was i am to young to have PD he said no your not Michael J Fox was in his 30s

when i asked what i could expect his reply was that it is a progressive condition  but it most people it progresses slowly over many years even decades and everyones experience is different , in my case he said i was at a advantage and maybe a disadvantage the advantage being i was only 47  and there was a lot of promising research going on in looking for a cure  that may come but stressed there  were no promises, the disadvantage being if the condition progressed in 10, 15 or 20 yrs i will only be mid 60s but that is a bridge i will cross when and if i get to it

I will send a email now Peter and please do keep me posted

but as a lot of people on this forum will tell you positivity is the key concentrate on what you can do not what you cant do

#5

Hi

I find using a medication interaction checker a really useful tool.

see link below

http://www.healthline.com/druginteractions?addItem=sinemet

Poker

#6

Hi Shelly65...I was blessed the day I was christened  and have tried to live up to ever since. The first part of my name  is P Hill and I have always regarded myself as being somewhat Phil...osophical. I have learned to cope with lots of things but what's most important is that should I die tomorrow then I will die a very happy and contented man. My Philosophy is now to live and enjoy everyday as if it was my last, I want to celebrate my life while I am still alive and to show everyone around me that if I can cope with adversity making the most of ; then they can too. I've seen that trait in others and have admired and been humbled by it. Why should I be any different.

 

 

Peter

#7

Hi Peter.

I read your posts with interest, because I have been taking Simvastatin (40mg per day) since about 2005, and I was diagnosed with PD in Feb 2007. I was probably having PD symptoms long before I was diagnosed (and therefore before I was prescribed Simvastatin) but even so.....

I have queried with my diabetic nurse, why I have been prescribed such a high dose of Simvastatin when my cholesterol is not actually that high, and she said that it was their standard practice to prescribe 40mg for everybody.

To be honest, I am on so much medication now for PD and other things (I take 28 pills a day I think  -  at the last count!)  that I tend to forget about the stuff that I've been taking for a long time, as long as it's not giving me side effects (which Simvastatin never has). 

I hope your appointment goes well, and you get a diagnosis and some answers.

And now I'm thinking that maybe I need some answers too.....

confusedquestion markfrown

#8

Hi Kathy do you also take Diltiazem? If so that 40mg of simvastatin is above the MHRH guidelines of 20mg.

Everyone in a similar situation ought to get together and change GP's attitudes to prescribing medicine. What they are doing is verging in the criminally insane and we are paying the price of their arrogance and incompetence.

It appears as though they have been force fed horse manure by the drug companies....If this was USA and not UK then quite a few GP's would face legal action...if we had that kind of persuasion then The UK government would need to wear incontinence pants ...but as it is they are invulnerable or so they think.

 

 

Peter

 

 

#9

Hi Peter.

No I am not on Diltiazem (that is not one of the many drugs that I take!). I was prescribed Simvastatin because I have Type 2 diabetes which is controlled by medication (Metformin.and Sitagliptin).  When my diabetic nurse prescribed the Simvastatin, I remember her saying that my cholesterol level was only very slightly high, and if I wasn't diabetic, they probably wouldn't bother prescribing anything. However, it is their 'policy' to routinely prescribe 40mg Simvastatin as a starting dose to anyone with diabetes and high cholesterol.

I've just scrolled back this thread and I see that your appointment was yesterday. I don't think you've posted on here since then, but don't forget that if / when you're ready to share, there are people here who are ready to listen.

Take care.

Kathy  smile

 

#10

Hi everybody, if you check on the mhra website :www.mhra.gov.uk (government's medicine advisory and regulation authority, very interesting site) you will find that Simvastatin is no longer prescribed and every one should by now have changed to Atorvastatin or another statin. If you're also taking Diltiazem (and I am) the statin dose is usually lowered. I too had some difficulty getting the lower dose. I looked around on the internet , mainly to see what the equivalent dose of 20 mg Simvastatin (which I was taking at the time) to the new  Atorvastatin dose was, when I got the letter that there was going to be a change of statins . The information I found among other UK Health Authorities with their own information for prescribers was very interesting .My conclusion : 20mg Simvastatin= 10 mg Atorvastatin,  so I was somewhat shocked to see that at the change-over my prescription went up from 20 mg Simvastatin to 40mg Atorvastatin (and remember I am still on Diltiazem!) At my request I managed to get the dose halved to 20 mg, which might still be too high......

#11

I Have major problems with most of the symptoms associated with PD but apparently not enough to even warrant the label Parkinsonism.....According to the geriatric geriatrician who'm my arrogant and annal retentive GP sent me to see rather than a neurologist...once again the NHS have failed me miserably. I have lost complete and utter faith in this organisation and believe this systematic failure is contrived by a government that has no interest in the most vulnerable sectors of society. The last time the the western world saw a government any where near its like .....six to eight million jews died as a result.....are Cameron and Osborne  alias Hitler and Goebals ...looking for their final solution.
Me ...well I have had enough.....I won't commit suicide ...but will come to my own conclusions and let the almighty pass his own judgement....I have stopped taking all medication...that the so called medical profession have disgracefully prescribed as essential for my well being. I call it disgraceful because they blindly adhere to all the hype and bullshit dished out by the drug companies believing they are helping the poor souls like us who are vulnerable enough to need help........rememember above all these companies are out to make profits......we are their major instruments in their wealth creation and their atttude towards us is the same.....tools and instruments can and are easily replaced.

 

If you have any persuasion with the almighty put in a good word for me

 

Peter

#12

Additional........The most life threatening aspect of what ever it is that is causing the3se symptom's if you have not worked it out for yourseleves...is the deep psychological problem/s that I am experiencing...it is more distressing for my wife....last night was so bad that she phoned the NHS emergency help line....yes they were very immediate and helpful in their initial response and put her through to an emergency mental health crisis nurse...who dutifully followed the script and thought I needed to be seen by the local duty Crisis nurse....who must have been overwhelmed with work as it was well passed midnight before they phoned ...well I assumed it was they that phoned...my wife and I were fast asleep ...so never heard the phone ...or heard the second call.. They left a message on the answerphone  saying that they called...by the way...it did not accept ring back dialling. As yet there has been no follow up call.....so my wife has been let down by the NHS too.

I could have been persuaded to at least take Isosorbide mononitrate, asprin and omeprazole with the GTN spray if needed.....but this just shows the deeper problems within the NHS...and how they are not only failing us but failing our carer's..

Don't misunderstand me there is some method to my madness.....the other drugs that I take especially for my heart ...all have tentative links to neurological disorders.....it is my fervent hope that by eliminating those drugs from my regime....I might find a drug induced solution to my problem and hence return to a life that I once knew.....now that might be just too optimistic. But as I said from the start; since joining Parkinson's org....the symptom's are there it just needs the right label.....and  moreover, I have 2 pre-existing conditions more life threatening than Parkinsonism ( with the exception of PD induced psychopathic behaviour). I'd now rather place my health in religion or the super natural than the NHS that may have well have caused the problems in the first place.

#13

Lighthousepoet -- Belatedly, I have read your posts.  As a US citizen, I can offer no comments on your NHS.  I can, however, say that we have our share of incompetents in the medical field.  The first neurologist I consulted told me flatly that I'd be in a wheelchair within 10 years, because that's just the way PD is.  When I asked if pwp ever had trouble swallowing, he said no.  Can you imagine such ignorance in practice? 

But I was sorry to read that in October you stopped all meds.  PD is sure to advance and get a firmer grip on you and your life.  Could you not take just one medication?  whichever is the most effective fighter against symptoms?  I am wondering how you are now, one month later.  I'll seek other threads in which you may have participated.

Best wishes.

#14

Dear Peter; the almighties mind (if indeed he exists) is hidden from me, unfortunately many medics believe themselves to be god and forget to listen to their patients!  

I have however been fortunate my G.P has realised I might know what I am talking about when I tell him how I am feeling, my Consultant is a good man who believes in us and doing the best for the NHS

I have Early Onset Parkinson's and have had for 6yrs with my good/ bad days but I am truly blessed by a wonderful family who support me in good times and bad.

I defend your right to determine your own future and add to that, that no-one will criticise your choices, but I also wish you love peace and happiness which I hope/pray you may have in abundance.

 

BJS