Tuesday 30 November 2010

fibromyalgia

Yet another misdiagnosis waiting to happen. Stress/tension causes the body or especially mine or it did do to malfunction fluidity wise. My stress caused allsorts especially tremor. I now know that,

There are several people on MS website that have been diagnosed with both.

Mind and Body

I shall never again underestimate the influence that the mind has on the body. I have learnt so much and still learning. As nervous tension is causing me a bit of a problem at the moment, but I imagine once my physical structure with the help of an excellent Chiropractor, when my structure realligns, tension won't have such a physical effect causing such ridgidity.

See that whole Body Mind link is so powerful, and should be respected at all times

Listen to what your body is telling you

When I trace back to my very first funny feeling was approx 17 years ago, I had a desensitised feeling all down my left side from the top of my head to the tip of my toe, at the time I was diagnosed with depression and that was really plausable at the time as my partner caused quite a lot of uneccessary silly stress, lots and lots of trivial avoidable stuff really, but it all mounts up I suppose. (I didn't quite understand how much, and to what effect at the time) Anyway, (MS was certainly not mentioned at the time and thank God it wasn't. The feeling passed in a few weeks, and I continued normally with my life, even had a third child. You see I now believe that my body was warning me, to hang back on the old stress. But unfortunately I ignored it. So some years later, another set of avoidable circumstances this time bigger stuff, I eventually received another warning, this time a little more definable and severe, this time my balance was comprimised my second alert. Anyway what I am trying to say, I believe that I only went into remission because I DID NOT now about ms theory. So don't be so eager to get a diagnosis after your first alert, go and calmly continue life, but learn by what your body is trying to tell you.

Monday 29 November 2010

my mess

My mess/ms

I sat in my wheelchair, afraid and alone,
I hate being here I want to go home,
The thought of just sitting, for the rest of my life,
Cuts into my heart, like a long jagged knife,
Is this it, right now, how life is to be,
But luckily not, not happening to me,

Suicide was no option, that road I wont take,
But consider just this, ms maybe fake,
I focussed my mind on alternative routes,
Eventually I’ll succeed, in giving the boot,
My first port of call, a physio called Louise,
Who actually listened and did humour me,

And thank God that she did, acupuncture she gave,
Now that wheelchair sits there, I wont be its slave,
As time did pass by, the better I’d feel,
I’m liking this hand, a much fairer deal.
I’m back on my feet, with my walker ahead,
But I now know I wont, be forever in bed,

Its all so complex, a hell of a mess,
This stupid disease, that they all call ms,
I will not conform, there are answers I seek,
I will not just sit, shut up and be weak,
I will continue my quest, for however long,
They need not prove me right, but just prove wrong,

Stress is the worst thing, to let it all grow,
The effect it sure has, only I seem to know,
Stress feeds through your day, from morning to night,
It wont let you rest, its always in sight.
Stress feeds off stress and then feeds my mess,
It gets bigger and bigger and never gets less.

Its hard I now know to break into this house,
But my stress now lays quiet like some kind of mouse,
The bladder’s the key,  break the link in that chain,
And now I can watch it, go off with its pain,
When the link has been broken, you begin to live life,
Ms didn’t break me, and make me its wife.

I have taken it slow, at my kind of pace,
Not rushed or fought it, as is complex like lace,
But now that I see, now what hides it all,
I want to tell others, just give them a call,
Prognosis alone, causes all kinds of stress,
But strip it away, and there is no ms

By ME

Sunday 28 November 2010

An explosion of an umbrella that keeps going

After observing a much loved and well known website, several things have become apparent to me. Many, many people are in a position of limbo, now this in itself really concerns me, as they are then turning to others for advice or confirmation of a symptom that they may have, that comes under that massive ever growing MS umbrella, this is then confirmed by others who have been diagnosed that they also have the same sympton, and there you go, validated. For someone like myself,  that is a dangerous position to find yourself in, as I had most symptoms e.g tremor, spasm etc etc the only thing that I didn't have was fatigue, I have been subjected to personal indignitities that no man or woman should have to endure. Back to the self diagnosis of a symptom, there are many crossovers to other conditions, one in particular is STRESS it causes many malfunctions within the body, hairloss, ridgidity, itching, depression the list goes on and on. There is a mass of crossovers no wonder neurologists are struggling, Lupus, Lymes, Hughes Syndrome and I imagine many others. I havent even mentioned the indicative side effects of drugs given, so that a patient believes the sympton is that of MS, when in fact it is a side effect of a drug they are taking. I have looked into some drugs that are prescribed and it is quite incredible that there is undoubtedly an in your face link. I know exactly why people go to this particular website, it offers help support and friendship and there are many many good people on this site, but the ammount of overturned info is not good "go to www. here go to www. there" these are places you will NOT get conclusive proof of anything, its all assumed info, and if only veiwed as a medical problem, which is wrong, causes more stress related damage, as cramming ones head with unproven issues.

Even today somebody said, something like, we need to accept and move on, NO WE DON'T, if you doubt it, you have reason to, you don't have todo anything that you may NOT agree with, for reasons of your own Just because you have been diagnosed with a specific condition, doesn't mean you lose all ability to use your own intuition, don't let them lock that door, walk away and throw away that key.


There are alternative answers out there, I know this, but you have to throw out the MS manual, and get right back to basics. From a non medical angle, my problems, was STRESS and misaligned ATLAS.


I am also interested as to how many people diagnosed with MS, have had an autopsy after death, confirming conclusively whether or NOT as the case may be they have sustained meylin sheath damage. Now where are those findings may I add. If the original theory that MS is only condition that cause lesions on the brain and spine. So over 30 or 40 years no alternative theory has come along and cancelled that out, surely that is progress and what happens in science, or do we blindly go with that the original theory was 100% correct, no question, looks to me as if they have been running with the wrong ball all along.

Saturday 27 November 2010

I can't find it now

Although I can't fnd any info on it now. But there was an American wheelchair bound lady who was struck by lightening, and afterwarsds could walk. I wonder if the convulsion that was caused realigned her Atlas.

He is spot on

I received Noel Batten's DVD today and this man, (who I believe has been maligned by some,)  is spot on,  it was an incredible watch, I kept nodding and saying yes to what he said out loud. This (in my opinion) kind man sent me his ebook (for free ) some years ago, what he said about Tiffany then made perfect sense, as his other examples do today, gobsmackingly brilliant. I have always known that I was right, so how good do I feel today eh! brilliant. The Parkinson thing again is so very very interesting.

A diffferent soreness

I went to see john my chiro yesterday, and this is the first time I had soreness as a result of treatment, this is so good because all the other times I've had pain anyway so havent really noticed any difference.

Also, I am experiencing like growing pains now and again, the ones you have when you are a kid.

All this is really exciting, as I now know that I am closer to the end than the beginning. I might be sore, but I am happy.

Friday 26 November 2010

What is worrying me today

What is really causing me concern, is the resorting to a cancer drug (mitox) in treating those diagnosed with MS.
grabbing at straws, desperation and gineau pigs springs to mind. What also concerns me, instead of investigating the positives, for example that I have experienced through acupuncture along the bladder line, they seem to resort to Botox, this again seems a wrong move. An NHS physio called Louise introduced me to acupuncture, and I experienced many little possitives, which I hope have been noted in my medical file. Anyway after my current sessions with Louise I then did go to see a neurologist to request further sessions as still experiencing possitives and hadnt yet stopped, but I was told that I wasnt entitled to further session, get this, unless I got worse, well where on earth was the sense in that, total crackers, mind you I wasnt going to waste any more of my time by objecting, as already waited ages in waiting room.

Virtual friends

After my experiences, being forcably excluded from a site on an original  total false accusation. The same people who are seen as so kind, friendly, huggy and kissy by others, were certainly very crafty and I believe, had the hyena mentally, one starts and along come the others, I really cant be doing with all that. So as I say to my childeren on line on any say social site, people aren't always what they seem, so without making you paranoid always always be aware, and watch your back, but at the same time enjoy.

What woriies me is with this particular organisation, I think there was socialising within the ranks, from users upwards, and they knew eachother, so therefore in my case, when I tried to put my case forward, it fell on very deaf ears, very unprofessional and unsatisfactory. They know who they are, well aware. but at least I cant get chucked off here ha ha so perhaps I did have the last laugh

Thursday 25 November 2010

How much info can one person take

Apparently neurologists are now sending MRI results to patients, with jargon that only makes sense to a qualified medic. NOW COME ON dont you think those diagnosed with MS have enough non factual information to absorb, also given by others www. this and www. that reams and reams of it. no wonder they have no room to retain every day normal info as their minds are cranm packed with the thought of the condition and its problem every waking moment. For others like myself, who disagree 100% with diagnosis this would be a futile excercise, The only sympton I did not have was fatigue. I had juddering (tremor) due to a build up of nervous stress in my upper back. If I raised my arm horizontal out to the side, I could get it to stop. Flexing or spasm I had particularly when I needed to go to the loo, as acupucture improved my bladder strength, and Chiropractic treatment re my misalignment, this has now stopped. Tingly neck to right hand when dropping head forward (l'hermittes) this has also gone. trippy feet (dropped foot) now although I cannot stand because as yet I cannot put right heel to floor, dropped foot is not the reason.  I believe my tendons and muscles over a 9 year period have shortened down my right side, so is really quite painful as feels like calf muscle and knee is ripping when trying to stretch, but that will gradually as it has done get easier as they stretch back.So in my case would have been a waist of time researching symptoms, and totally irrelevant to my circumstances, as other rectifyable reasons for my problems.

Wednesday 24 November 2010

nobody can tell

There is no ultimate proof that a drug or procedure that is said to improve ones chances or symptoms, does not have part or all improvements experienced to be a placebo effect. This is because psychologically the thought of assistance can have such a massive effect in relieving an eliment of stress. There is absolutely no proof that it is the drug itself, non at all. Which in a way is a most possitive thing, the mind and body are so interlinked it is quite incredible

Side effect or symptom?

Another thing that concerns me is I have looked up the side effects of many drugs given to ms patients, to be quite alarmed that many of their side effects could heightens  an existing symptom or in fact create it, therefore the patient has no idea if caused by the condition or by the drug itself.

gut reaction

What does really concern me is people like myself who deny their diagnosis (which I have to undoubtedly prove by walking) is that people are being forced to accept the unacceptable and they have their own gut reaction of doubt (things don't seem to ring true) only to be then told, that you have no choice there are no answers, only then to be told "I think you may be in denial" to me what a load of utter rubbish, what gives them the right to say that to me, as if to say "I'm sorry you are undoubtedly in the MS group now" What???? so I just have to acceot go away, take what you are prescribed and shut up. Well I DONT THINK SO, and thank God I havent. There will never be progress if people are forced to deny their gut reaction, no progress at all, it might not be a medical solution, but a solution to some all the same.

Monday 22 November 2010

In Reverse

Walking is not going to happen overnight, still cannot stand, and have to drag myself around at mo. Couldnt get into bed last night for the first time eva. got upset and then that made it hatder and that upset me even more, got in eventually though. It took 9 years for my spine to twist, I expect certain things to get worse before they get better, but thank goodness that the acupunture improved my bladder and now its strong, as if I was like two years or so ago, all this would be so distressing. So on I go, and I will get there.

Sunday 21 November 2010

Not Happy with NHS

As confirmation after confirmation proves to myself that 10 years ago the NHS got my diagnosis on a possitive MRI I might add so wrong, it really is starting to annoy me. 10 years of my life written off, because the fact was my Atlas had shifted, due to my balance being conprimised, whilst having somekind of stress warning, my first one several years previous I unwittinglly ignored.

Because my Atlas was out over the years it caused my spine to twist, causing misalignment, including in my hips, making it impossible to stand and causing numerous knock on effect, particularly the bladder.

I have been looking through a book called The Chiropractic Way by Michael Lenarz, there is a list of ailments that Chiropractors can help with there are 10 out of 79 that is not including blood pressure,tinnitus,headaches/migraines etc. which are included under that MS umbrella This to me is a penny dropping very loudly, its a shame NHS arent that intuative, they have had 30year or so concerntrating on medical and science theories, perhaps it simpilar than that. They need to think outside the box, throw out the current MS manual and look at it all again with fresh eyes.

With today stresses on our young adults today, I imagine in that age group, esp with the pressures of exams and uni deadlines, there are many falling victim of this as I see it gross mis management.

I can only presume that the MS Society only concerntrate on research into the sciences of it all, In my oppinion what an incredible waste of resourses. Monies raised should have been put into both medical and possible alternatives. Its totally irresponsible and a very blinkered  attitude. It might be a voluntary organisation but thats no excuse, a professional openess should have been observed by those at the top.

Someone, join up the dots, its all out there, I found it, and I am just an ordinary Mum that knew things just didn't add up.

Saturday 20 November 2010

Pass it on

If you veiw this blog and although you may not  agree with what I say, please please pass it on to let others contemplate what I am saying, therefore kindly giving them the opportunity to make up their own minds either way. In the end I was constantly talked over by a minority group  on the MSS website, once this group got a bit personal, I was out of there, (don't need the agro) now I will never  actively  return, therefore these few individuals denied others the opportunity of debate and discussion, which they are quite capable of doing, it was such a shame. I am a person who is matter of fact, don't like hoodwinkers or time wasters, and mainly a bottom line person cutting out unecessary chat/info

Friday 19 November 2010

Tickety boo!

As I am doing well and am still de-twisting. and the burning pain from yesterday has gone, what a relief. When my left hip was manipulated, my right leg flexed up, you see the body is so intricate everything is connected, its amazing, I have skimmed through two books recently Quantum Heeling by Deepak Chopra and Chiropractic Way by Micheal Lenarz D. C. What both men say makes incredible sense to me on two different subjects but ver very much linked. I feel really quite excited about my future, and I know that I am on the right track, but to get here I have had to stay out of NHS system and ignore peoples attitudes regarding medical interventions etc etc it would have been very dangerous for me to be taken in by it all, its really quite scarey. 10 years of my life has just been written off, for what I consider avoidable attitudes. For me the last place I should be is the MS website, I'm not hard faced but my hugs kisses and prayers are not going to help one iota, but my research will, and that makes me very happy, as I cant be the only one

Today

I am really quite pleased to be seeing my chiropractor John today, Things certainly aren't a walk  in the park, I cant stand at all at the mo. eve though I was starting to be able to a couple of weeks ago, but then again I can do lots of little other things that I havent been able to. I used to be terrified of having a shower, even though I had a chair, not sliding of it and staying on it was a talent in itself, I'm not scared anymore which is brill. I do have to crawl at mo with usually right leg outstretched, but it is my choice to do so, my son accepts that is how I am at mo. and so do I, using my wheelchair is out of the question, and is only used when I see John. I am pleased to be going today, because the recent burning feeling in along my spine has gone at the mo. and when I manage to stretch out my right leg, the ripping sore feeling is nowhere near as bad as it was, its still sore but at least now I don't have to bite my pillow. I think over the 9 years I subconsciously got as wonky as I was, and now I am consciously reversing, I have experienced many different feeling. Particularly the crawling around my neck, like an insect is on me, and a tickley feeling in my upper right back. This blog is great as I get to write all my feelings down, rather than having to keep them to myself, as in a way I was trying to carefully do that on the MS website, to create some much needed possirivity. But unfortunately a minority headed by a long timer thought that I was only there to get under there skin, they were so wrong as I am mostly interested in influencing a much younger generation, and to get accross, that we have more control of our lives, than we are given reason to believe, it's the young open minds, that are able to stay out of the box that so many want to push us into, that will perhaps not view it as such a medical problem with drugs as its only solution, but have an alternative attitude and outlook. Believe me there are answers out there, its just a case of bringing them altogether, the psychological problems re anxiety and stress caused has a massive effect on excaserpation of symptoms. I was taking Citralopram ant anti d up until a couple of weeks ago,. Then it suddenly occured to me, I'm not depressed, and I am addressing my anxiety fears, I have made myself my controller and have opted out of the outside world at the mo. but that is my choice, no-one elses. And eventually I will be going out there just not yet and totally on my terms. I could write for days but I best stop as I will miss an important appointment that I have today. So bye bye my new friend, as in my blog

Thursday 18 November 2010

Its good to talk

I would like to make it very, very clear and to thank many who have helped me with various question and theories and with some thought prevoking stuff that they gave me important feedback on the MS website, it was so important to learn how people felt about some issues. I had spent many, many months gaining peoples trust and I would like to think a certain amount of respect for what I was trying to do. I would like to especially thank Ellie, who advised me about The Healing Crisis, this has been crucial to me. So thanx Ellie. Unfortunately for reasons beyond my control, I have been forced to leave the website as a participating member, I am now strictly an observer. I could divulge more but I have to be very careful for future legal reasons.

But there are many many good kind people on that site and to them I say Thank You.

Wednesday 17 November 2010

Why?

I find it quite incredible that Chiropractors are not consulted or involved in the treatment of MS a disease that is known to effect the spinal chord, This just doesnt make any sense at all. Chiropractors are expert in the bodies skeletal structure, it seems totally mad to exclude them. I now know how crucial the cervical spine is this part of the spine includes the Atlas on which the head balances. As I have said before our stucture is like a piece of engineering, if one componant is slightly out it renders the rest useless.

Saturday 13 November 2010

I think why heat has its effect

The heat used to make me feel so bad, having to have a tepid bath to bring down my temperature.

Any way after having acupucture initially via the NHS along the bladder meridian, by a fantastic nurse called Louise, I experienced many benefits the main one the strengthening of my bladder, now not sensitive, no more accidents, or urgency, plus this is the second year the heat has not affected me at all.

As to why this has happeneds is, energy is expelled from the body through the urinary system, in my case this was faulty and I believe that caused me the problem.

self diagnosis

Somebody can ask via a forum about a particular symptom i.e. reflux and in a reply it is verified that they also get this, and it is loosely presumed that this is a ms symptom, when in fact there may be an alternative cause. Many things are stress related, even drug symptom related, stress is such a contributary factor in exaserpating many motor functions, a continuous catch 22 manifests, an underlying pain/ache causing stress which then effects the bodies ridgidity and causing the pain to increase, thus causing more tension and it becomes a continuous catch 22 were the physical effects the psychological vice versa, a loop begins. I think neurologists are in an impossible situation, they have to follow protocol, but some must know that things just don't make sense. The umbrella of supposid symptoms has become so big it is impossible to hold it up.

I believe that the skelatal structure is like a piece of engineering, and if one componant for example the Atlas, the whole system malfunctions.

I am so pleased that I had the acupuncture along the bladder meridian,which made a great improvement in strength, because if not I would not be able to see and go for treatment to my chiropractor, because it would worry me.

There are answers out there, they are just not through medical means, but alternatives. We have become a society so reliant on drug that we can't see outside the box.

Friday 12 November 2010

Feed me

Stress, stress fed my mess, it got bigger and bigger and never got less.

Stop watching me

What got to me regarding the diagnosis, was the thought that I was now public property. I have always been a private person, my business strictly stayed mine, what I disclosed and to whom was always my decission, gossip and heresay I stayed out of, my choice. Now all of a sudden I had none, strangers had complete access to my business and that to me was grossly wrong. Then the paranoiya set in, people were watching every move I made, they knew things about me and that wasnt fair. A friend walked passed my house and I reversed into a cupboard (a big one, not the one under the sink) scared that he would see me and call round, an irrational act but all the same I did it. (I just couldn't be bothered putting on an act, not today) I would do the garden, and stop and be very quiet if anyone passed by, I don't want people to see me struggle and feel sorry for me, God forbid, I have always always been very independant when it comes to a bit of D.I.Y.

Anyway there was somebody watching me, every move I made and struggled at,. So I had been right all along. But the person watching me was ME and no-one else. People are busy with their own lives, why would they waste it  watching me, its only now I can see that.

How long ago?

How long ago was it established that ms and only ms produced the sort of lesions or white patch thingys on the brain. Has nothing come along since then to question that theory, that perhaps some kind of stress overload may have the same effect/ pattern.  This maybe another area that I may look into, just to settle my own curiosity.

Am I the only one?

Am I the only individual who believes has been mistakenly diagnosed with the condition MS. I keep searching, just can't find anyone, I know about the Medical Mistake theory by I think Noel Batton. Is it that anyone who doubts their diagnosis, is convinced by others, that they must be in a state of denial wow that's incredible, there are always mistakes made by the medical proffession or scientists, that's how we learn, by past mistakes, thats just life.

But no-one misdiagnosed with MS. well I know at least one instance ME

Thursday 11 November 2010

Placebo/drug trials for ms

If a drug is trialed against a placebo, how are they possitively sure that the actual drug has not had a placebo effect.

Wednesday 10 November 2010

my mess/ms: my mess

my mess/ms: my mess: "Hi! I was diagnosed, in 2000 MRI of having MS (Multiple schlerosis). This was based on a positive MRI. Today this diagnosis I totally refute..."

A mess of drugs

I have just looked up some side effect of drugs used to treat todays MS particularly gabapentin and 7 others, the results are incredulous, as a lot off side effects are indicative of ms itself, so a drug that is prescribed to solve one problem causes another that appears to be caused by ms itself. Crazy no wonder no-one knows whats going on, its so overcomplicated. Where in my case my underlying problem, which after acupuncture moved some of my bladder problems out of the way, and a lot of psychological stuff which included some acute anxieties, I finally got down to my problem, my Atlas which had caused so many knock on effects, amazing and very complex, wow!!!

Tuesday 9 November 2010

Yet another angle

Lymes
Caused by a bite from a tick, leaves sometimes a bullseye shaped mark which maybe painless.

After rash symptoms may be

fever
headache
swollen lymph glands
muscle and joint pain
general feeling unwell

If not treated promptly
fever
headaches
stiff neck
joint swelling
fatigue
joint pain
knee pain
arthritis

A blood test can confirm diagnosis

Well I didnt know that

Hi!

Lupus can be drug induced, well I didnt know that, wrong diagnosis.com is so informative.
Lupus usually occurs in young adulthood, people prone to the disease are hispanic/black descent plus those who take beta blockers.

periodic attacck/flare ups

All individuals are different (one size doesn't fit all)

Butterfly rash on face maynot occur

Symptoms may include

fever
seizures
anemia
photophobic (what that is I dont know)
painfull swollen joints
rash from sun exposure
hairloss

There is no one particular test that can be done, a doctor would go by medical history.
There is a lot more reading on it, but blow that for a game of soldiers

Monday 8 November 2010

Open those floodgates

Hi! I do lots of skimming research (no big reading) on the Atlas, apparently the symptoms of a misaligned atlas are sinus problems,asthma, tinnitus, allergies, neck pain, balance problems plusnervous tension, fatigue, knee paintrigeminal neuralgia, cervical & lumber pain problems, arm pain, hip pain, lower back pain, numbness, fibromyalgia.


In my case it has also effected blood flow, as mine has increased remarkably, I have read it can effect blood flow, kind of makes sense to the CCSVI theory in ms, I dont doubt at all that there will be a large number with restricted blood flow.

I have found many many answers to many many questions, I'm so glad I only take notice of my own investigations.

The plot thickens

Regarding MS I have thrown the rule book out, and so they should too.

These could be possible factors, especially if MRI and Lumber puncture is clear.

Lymes Diseases, caused by a bite from a tick,
Lupus
Hughes Syndrome
Lymphatic system
Pressure points (effected with stress)
Bladder meridian (acupucture speak)
Misalined Atlas (that causes spine to eventually twist and many other problems)
Then throw in the Psychological problems that are caused, by diagnosis  just even waiting in limbo.

When is someone going to join up the dots, oh when, I've joined mine up, not easy but I got there.