Monday 18 June 2012

children are being misdiagnosed with ms, they've got it wrong

They have to be stopped doing this, its nothing less than abusive. A young girl that horse rides could easily had a fall and damaged her Atlas, causing her these problems, UAE4EVA was 14 when diagnosed, this young girl had plans for her life, how DARE they get it so badly wrong. And as I improve daily, my most recent happening is my feet have returned to their normal color, they used to be very dark, purple in fact, that has happened in the last two days. The NHS has done this to me, not only by misdiagnosing ms on a positive MRI, but I had Candida too, a condition that Doctors deny exists. Western medicine have created this problem and its MASSIVE, as it is not just me, but all of them. The condition ms does NOT EXIST.

LEAVE OUR KIDS ALONE. GET IT RIGHT


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Image


New research suggests the number of children suffering from multiple sclerosis may be higher than previously thought.

It remains a very rare condition and only a third of young people who have an attack will go on to develop MS in later life.

But it can have a devastating affect on children and their families.

One of those is 15-year-old Emily Murdoch from Cannock in Staffordshire.

Like many girls her age, she loves horses and has been riding since she was a little girl.

One day she hopes to represent Britain in competition, but she does not know if it will be in the Olympics or Paralympics.

Wheelchair
At the age of 12, Emily was diagnosed with childhood multiple sclerosis. An attack can leave her confined to a wheelchair when her legs stop working.

She suffers from severe tiredness, muscle spasms and numb hands and legs.

"It's not really very nice," she says "especially when my legs go on me, because it's the second time my legs have gone on me."

"It took my left hand last time.

"My legs get weaker. I know when my MS is bad because my legs get weak and my horse can feel it."... Read More - http://www.msrc.co.uk/index.cfm/fuseact ... ageid/1408

_________________
The Multiple Sclerosis Resource Centre

Squiffy's House of Fun - Laughter for Multiple Sclerosis

Sunday 10 June 2012

Never to visit MS Society again

Because of the gang mentality of ANU and her troops, and the bullish way I have been treated,  because I let the whole sorry affair bother and frustrate me, and that has a physical affect. I have decided once and for all, to never ever go to the MS Society message boards again, its too depressing not being able to help others, and if I can't do that in peace there is no point in being there.

I was prepared to give them a 2nd chance, but they wont get a third

ms society - my info only

I have decided not to post the following info on Lyme Disease because of the inappropriate way some others choose to start mocking what I say, this causes confusion in other members I want to inform of its possibilities, but to do so may cause more damage than good, refer to previous posts on here. I will when I walk, l will make it clear that it is the MS Societies fault that I do not post the following

This makes the MS Society and Thisisms website no different than eachother, now that is a worry.



philanthropic, giving, donations, donate please

Fibromyalgia, Chronic Fatigue Syndrome and Lyme Disease

by Bonnie Gorman RN
 
Dr Sam Donta presented a comprehensive, compassionate, cutting-edge lecture to Mass. CFIDS/FM Association members on November 3rd, 2002.  His topic was "The Interface of Lyme Disease with CFS and FM: Diagnostic and Treatment Issues."  Dr. Donta is a nationally recognized expert on Lyme disease.  He is the Director of the Lyme Disease Unit at Boston Medical Center and a Professor of Medicine at BU Medical School.  He is a bacteriologist and an infectious disease specialist, who views CFS and FM from that vantage point.  He is also a consultant to the National Institutes of Health (NIH), and presented at NIH's scientific meetings on CFS research. 

What does Lyme disease have to do with CFS and FM you might be asking?  Some people believe that Lyme disease may be one of the causative factors in both CFS and FM.  Others believe that some CFS and FM patients are really misdiagnosed chronic Lyme disease patients and vice versa.  Some believe that there is no such thing as chronic Lyme disease, instead these patients actually have CFS or FM.  We asked Dr. Donta to help sort all this out.
Parallel Symptom Patterns
Dr. Donta presented the symptom lists for chronic Lyme disease, chronic fatigue syndrome (CFS), fibromyalgia (FM), and Gulf War Illness (GWI).  He pointed out the similarities between them, and found there were few differences.  He has treated hundreds of patients with these illnesses.  He found that CFS and GWI have identical symptoms, and FM is only distinguished by a positive tender point exam, that is often positive in CFS and GWI as well.  Clinically it is almost impossible to distinguish or differentiate these illnesses. 
He has concluded that chronic Lyme disease is remarkably similar to CFS, FM, and GWI.  These multi-symptom disorders have similar symptom patterns consisting of fatigue and neurocognitive dysfunction, along with numerous other symptoms that probably relate to altered neurological function.  Musculoskeletal symptoms may be more frequent in FM and in some patients with chronic Lyme than in CFS, but the definition of CFS and GWI also includes muscle aches (myalgias) and joint aches (arthralgias).
 
Lyme Disease Symptoms
Flu-like illness, fever, malaise, fatigue, headache, muscle aches (myalgia), and joint aches (arthralgia), intermittent swelling and pain of one or a few joints, "bull's-eye" rash, early neurologic manifestations include cognitive disorders, sleep disturbance, pain, paresthesias (including numbness, tingling, crawling and itching sensations), as well as cognitive difficulties and mood changes.  
The only symptom difference in Lyme disease is the expanding circular rash with a clearing area and center resembling a "bull's eye."  He pointed out that Lyme has multiple types of rashes and half of the rashes are not typical, they may not even include the "bull's eye" rash.  They can appear from two day after the bite, then go on for a week or so.  Patients who are infected may not develop or see the rash, and may not develop any future symptoms.  In studies, only one third of the patients were actually aware of their tick bites. 
30-50% of acute Lyme disease patients went on to develop chronic Lyme disease.  Additionally, some previously asymptomatic patients may reactivate their infection following various stressors such as trauma, surgery, pregnancy, coexisting illness, antibiotics treatment, or severe psychological stress.  The Lyme vaccine can also reactivate their infection.  Similar triggers such as trauma, surgery etc. are known to precipitate CFS, FM and GWI as well.  This is not a new phenomenon with infectious diseases.  We know infectious diseases (i.e. TB) will reactivate after illnesses or surgery-- any stressor.
Dr. Donta reported on the effects of gender on host susceptibility in Lyme disease, CFS, FM and other multi-symptom diseases.  In all these disorders, women appear to be more affected than men, usually at about 2:1 ratios.  He noted that neural cells contain estrogen and progesterone receptors, and that herpes viruses can utilize estrogen receptors to gain access to the reservoir in the cell nucleus.  Treatment of chronic Lyme disease also seems to be gender-dependent to some degree, with men generally having more speedy and complete recoveries compared to women.  He concluded that gender relationships are known for a number of infectious diseases, so it would not be surprising that such a relationship exists for chronic Lyme disease, CFS, FM and other multi-symptom disorders.
Etiology
Lyme Disease: A distinct difference between Lyme disease, CFS and FM is that the origin of Lyme is clear.  Lyme disease is caused by spirochetal bacteria transmitted by the bite of an infected deer tick.  This bacteria is the Borrelia burgdorferi bacteria.  It was identified in the late 1900s in Europe.  The US was late to recognize what Europe had described.  Lyme disease was not formally identified by the CDC until 1977 when arthritis was observed in a cluster of children in and around Lyme, CT.  Since that time Lyme disease has been identified in many states.  The CDC reports that it causes more than 16,000 infections per year in the US.  Some researchers feel that the prevalence is higher than that. 
CFS and FM: Dr. Donta feels that Lyme disease is an important cause of CFS and FM.  In addition to Lyme, there are a number of other possible causes.  The evidence is still circumstantial though.  Epstein-Barr virus (EBV), the major cause of infectious mononucleosis, continues to be debated as a cause of CFS.  It is uncertain whether EBV can cause symptoms other than fatigue, such as myalgias and arthralgias that are not seen during acute or reactivated EBV infection in patients who are being immunosuppressed, but it remains possible that EBV could cause one type of chronic fatigue disorder.  There are also other herpes viruses i.e. HHV6 that are being evaluated as potential culprits.

Dr. Donta reported that recently recognized species of Mycoplasma (Mycoplasma fermentans, Mycoplasma genitalium) have been implicated in CFS, FM and GWI.  These same bacteria have also been implicated as causative agents of rheumatoid arthritis, based on PCR-DNA evidence in patients with these disorders in which 50 percent are found to have the DNA of the Mycoplasma in circulating white blood cells, compared to 5-10 percent of a normal population.  Whether the presence of this DNA represents past exposure or ongoing infection remains to be resolved.  No long-term studies have yet been performed in patients with CFS and FM to determine whether the finding of Mycoplasma DNA persists over months or years or whether such patients have any evidence of other infection such as Lyme disease or infection with Chlamydia species.
Central Nervous System Involvement
Dr. Donta reported that in Lyme disease, the nervous system seems to be the primary target for the bacteria causing the disease.  Patients with Lyme disease express many neurologic symptoms such as pain, paresthesias including numbness, tingling, crawling and itching sensations, as well as cognitive difficulties and mood changes.  Even the joint pains and occasional arthritis appear to be neuropathic in origin, as anti-inflammatory agents such as ibuprofen and other nonsteroidal anti-inflammatory drugs (NSAID) have little if any effect on the pain.  Experimental evidence from animal models also affirm the localization of B. burgdorferi DNA to the nervous system.  Dr. Donta postulates that the disease mechanisms could involve inflammatory responses, autoimmune responses or toxin-associated disruption of neural function.  Any inflammatory responses appear to be weak, and there is no compelling evidence that Lyme disease is a result of immunopathologic mechanisms.
Commenting on his research, Dr. Donta speculated that if they are correct, and lyme bacteria is a nerve toxin that interferes with the transmission of the nerve impulse, then that is all you need to impede the normal flow of information.  There is a lot of cross-talk in the nervous system.  This toxin will decrease that cross-talk causing delayed responses resulting in cognitive problems-- the brain fog so commonly described in all these multi-symptom disorders. 
Although the disease pathways for other possible causes of CFS and FM have not been defined, Dr. Donta postulates that the central nervous system would appear to be a logical target for other pathogens or other disease processes.  These illnesses clearly affect the brain and are bound to cause many neurological manifestations.  Any changes in immunologic function would not appear to be sufficient to explain the various symptoms, and are likely to be secondary to other disease processes.
He feels we have been thinking too simplistically about finding whole organisms replicating in chronic diseases.  It is highly likely that there is no single cause for these illnesses.  It's more likely that there are multiple causes-- different organisms causing the same final set of symptoms.  Researchers need a better algorithm to study these fatiguing illnesses.  We need to be more inclusive, rather than trying to separate the illnesses.  Sometimes in medicine, if an illness is too complex to study, research interest dwindles.  We have the technology to do the research, but there hasn't been the will and the momentum to get it done.
Clinical Diagnosis

Dr. Donta reiterated that the diagnosis of Lyme disease is primarily based on clinical grounds, just as with CFS and FM.  Once other disorders are ruled out, the combination of symptoms over months is sufficient to make a presumptive clinical diagnosis.  The diagnosis of Lyme is made easier if a typical rash is present during the early phase of infection.  After that, it is difficult to distinguish the flu-like illness that can occur a few weeks later, or can recur over a number of months. 
Dr. Donta reported that some patients develop severe headaches and an aseptic (infection free) meningitis, which frequently is diagnosed instead as viral meningitis.  If a Bell's palsy occurs (drooping of one side of the face), the possibility of Lyme disease is likely.  If an unprovoked arthritis occurs, causing swelling of a single joint, especially the knee, but sometimes more than one joint, then the possibility of Lyme disease should also be given high consideration. 
He emphasized that it is the chronic phase of the disease that causes most problems for physicians and patients, because of the lack of objective signs and the presence of so many symptoms that it causes some doctors to attribute psychological reasons for the patients' symptoms.  Many patients then receive a diagnosis of CFS or FM, when they may have underlying chronic Lyme disease as the cause of their symptoms.
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Saturday 9 June 2012

being banned from the MS Society is why this blog exists

Because I was unjustly banned from the MS Society message boards and is the reason why I started this blog, as I explained on here back then. I was banned on a lie, a group got together and lied to get me banned as apparently I abused the PM facility. A crafty bunch I appealed to the web manager C Naylor, I went above her and even to the Director, nothing no investigation, nothing, I was and still am DISGUSTED  at the way I (Fee001) was treated, I'm sure that they all meet up together now and again, moderators included, what chance did I have back then at being treated fairly.

These are mature adults led on by what appears to be a lovely funny kind ANU unintentionally  cross her, and she is a very nasty, sarcastic woman, not a very nice person at all and with her gang behind her, they are nothing but a bunch of bullies, what must other people think especially young adults, this is not the way to behave.

MS society and a worrying group of individuals

 If there is a group of people behaving in such a sarcastic and as I see it a bullish manner and I've seen this done to others with ideas in the past and they are just hounded off and go elsewhere. it can just be because they dont like someones personality. I have left it 14 months before I tried again to give people some very relevant info. This group are very intimidating the ms society should stop this very bad attitude they have, I suspect yet again ANU is behind it all, its a cliquey group of mainly women but also some males. this PROBLEM needs to be addressed by the MS SOCIETY and fast, as this has been allowed to go on for years. I'm sure moderators and the site Managers know full well this goes on, they just let it happen. To get involved with MS Society is BAD news and not just for this reason. They plow all donated money  into finding a medical solution, when its alternative causes they need to be looking into

As I say time and time again,  you cannot cure what does NOT exist.
08 Jun 2012 at 2:27PM
Just sit and wait
Hi!

It causes me great concern for those of you that are left sitting and waiting for a positive diagnosis, now lets ask ourselves, is that your only option, then NO.
You do have choices to make your own investigations. this is for starters, I am not premoting this lady, but she writes very concisely, take note of the symptoms that misalignment can cause. google dr windman atlas, take a copy of the diagram of the affect of misalignment on the body. copy it by printing it off. Then go to american acupuncture, go to the bladder meridian (acupuncture speak) copy the pcture of the meridian of the body, it runs down the spine and down  the right leg, now crossreference the two diagrams, the practically match. I couldnt understand why when I had acupucture along the bladder meridain it had such a positive affect. I do now. It all makes incredible sense to me,.
08 Jun 2012 at 3:23PM
Hi Fee,

Long time, no speak. But this is an MS Forum not a misaligned Atlas and chiropractic forum....
Take care,
Belinda
anu
08 Jun 2012 at 3:53PM
Hi again Fee,
You've stated before that you don't have MS, that you were misdiagnosed with MS so why are you appearing here in Limbioland spreading your false doctrine with people desperate for genuine diagnoses?
Some people might also benefit from chiropractice and / or acupuncture. You do not have MS, you've said so before, your situation is therefore completely different from someone who may well unfortunately be on the way toward an MS diagnosis.
So please go away (again).

08 Jun 2012 at 4:02PM
I don't think I've misaligned my Atlas, but I've misplaced my dictionary......
08 Jun 2012 at 7:21PM
My body is already in terrible pain why on earth would I want someone to stick pins in me?
No thankyou.
Im happy with my meds,thankyou.
08 Jun 2012 at 9:00PM
good to talk no thanks
09 Jun 2012 at 5:28PM
@goodtotalk.
What you are spreading is nonsense.
Misaligned Atlas does not list anything to do with MS.The headaches expierinced by MS suffers appear to have nothing to do MA.Plus usaly caused due to trauma.
Looking at the list of things that are possibly caused due to MA you could say Chronic fatigue,A balance problem,Migraines and headaches however what MSers suffer is nothing to do with  MA....
You are clearly here to promote this twoddle and you do NOT have MS and therefore should NOT be posting such twoddle here.
"If you suffer from recurring back pain, migraines and headaches, a stiff neck, joint pain in the hips and or knees, rotation of the hips, repetitive strain injury, jammed spinal nerves, trapped nerves, a difference in leg length, there is now new hope".
This again has nothing to do with MS.Our synptoms come from the brain and spinal column NOT MA....
MA is due to a missaligned bone in the kneck and again NOTHING to do with MS...
STOP posting this utter rubbish.

09 Jun 2012 at 6:17PM
I have a misaligned atlas but it's only because the staples have come outtounge


09 Jun 2012 at 11:52PM (new)
I have one to,my atlas has slipped  off the wall LOL.
10 Jun 2012 at 7:24AM (new)
.....LOL.....that's made me chuckle ladies happy
Fee, why do you persist with churning this stuff out?
Limboland is a place where people come because they're worried and concerned about the possibilty of being diagnosed with ms or something similar. They need reassurance and a listening ear not false hope.
Oh and by the way, I have a chiropractor and he doesn't spout all this nonsense......


Send author a message
goodtotalk

Friday 8 June 2012

MS Society- they are oblivious at Anu and her follower

These people are so silly to do this, its not right, I am trying to help others particularly young adults.

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08 Jun 2012 at 2:27PM
Just sit and wait
Hi!

It causes me great concern for those of you that are left sitting and waiting for a positive diagnosis, now lets ask ourselves, is that your only option, then NO.
You do have choices to make your own investigations. this is for starters, I am not premoting this lady, but she writes very concisely, take note of the symptoms that misalignment can cause. google dr windman atlas, take a copy of the diagram of the affect of misalignment on the body. copy it by printing it off. Then go to american acupuncture, go to the bladder meridian (acupuncture speak) copy the pcture of the meridian of the body, it runs down the spine and down  the right leg, now crossreference the two diagrams, the practically match. I couldnt understand why when I had acupucture along the bladder meridain it had such a positive affect. I do now. It all makes incredible sense to me,.
08 Jun 2012 at 3:23PM (new)
Hi Fee,

Long time, no speak. But this is an MS Forum not a misaligned Atlas and chiropractic forum....
Take care,
Belinda
anu
08 Jun 2012 at 3:53PM (new)
Hi again Fee,
You've stated before that you don't have MS, that you were misdiagnosed with MS so why are you appearing here in Limbioland spreading your false doctrine with people desperate for genuine diagnoses?
Some people might also benefit from chiropractice and / or acupuncture. You do not have MS, you've said so before, your situation is therefore completely different from someone who may well unfortunately be on the way toward an MS diagnosis.
So please go away (again).

08 Jun 2012 at 4:02PM (new)
I don't think I've misaligned my Atlas, but I've misplaced my dictionary......

ms society and a user called Anu-

After well over a year, I return to ms society site to try and eventually inform and help others,  and yet again  as last time, a very silly and big ego woman starts bitching again, with childish sarcastic comments, no change there then, she is so arrogantly ignorant and has brainwashed people that she is so funny and upbeat, she needs stopping, because she is causing harm by her childish behaviour - how stupid can she be

The ms society is at fault here by letting her do this- she needs to be warned to back off

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35 posts / 1 new
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what was your trigger
Author
Post
06 Jun 2012 at 4:10PM
what was your trigger
Hi!
I hope you dont mind me asking,but what do you consider was your trigger that resulted in an ms diagnosis,
Stress
Epstein barr virus- which includes gladular fever, the herpies complex, which includes cold sores,  genital herpes even shingles or chicken pox is related to it.
Perhaps a car accident, which has included a whiplash injury

06 Jun 2012 at 4:21PM
I don't consider there was one, sorry.
With hindsight, I think I had it years without realising, but I don't think anything in particular sparked it off.
I didn't find out until after diagnosis that it was already in the family.
So I would just say: "Bad genes".
The processes that led to MS could have begun years before I noticed any symptoms, and certainly years before I was diagnosed.
It could have been a ticking time bomb since conception.
Tina
06 Jun 2012 at 4:33PM
I believe mine was Optic neuritis when I was 19 (now 44) , was not diagnosed to some years after though. Also around 5 years ago  got undiagnosed and last year after my feet and legs had bad pins and needles got re diagnosed with benign MS.  I do believe my 2nd relapse was brought on by stress.
06 Jun 2012 at 4:38PM
My symptoms began when I was 12, but it wasn't until my granny died when I was 28 that I got ON and a diagnosis.  My granny died on the Sunday, the ON started on the Tuesday and by the day of the funeral, the Friday, I was completely blind in that eye.  That was when the doctors finally took me seriously and investigated things properly.  My symptoms have been more severe since diagnosis than the ones pre-dx, not sure what might have triggered the pre-dx ones, think it may have been stress from being bullied at school, but I can't really remember.
I agree with Tina - I think that the MS has been present all my life, but it took stress to bring it to the surface.
Luisa x
06 Jun 2012 at 4:40PM
I dont think there was a trigger,I was a happy go lucky mum at age 19,who enjoyed being a mum and aunty to many children,take kids to the beach,the park,bonfires,I was so fit.
At 19 I started to get headaches so bad I cried in pain,with that I got complete numbness all down the left side of my face,pain,and my left side of my face drooped and slurred speach,dizzyness/vertigo..I put this down to taking the female pill so I stopped taking it and the symptoms continued.
Now looking back it apparently was MS symptoms.I went from being fit,running around playing football to what I am today.
So no I didnt have stress,my life was very good,even over the years I still had a darn good life,I worked and done volunteer work.
Nope,sorry there is no trigger and no no one in my family have it and my twin sister is MS free.

Charlie,x
06 Jun 2012 at 4:46PM
I'd put it down to a very stressful time at Uni, that not only led to me having a major eating disorder, once the bad time was over I was habitually so tired I couldn't do course work, clinical work and have a life all at once, I gave up all the activities I used to do (it was not unusual for me to run in the morning, cycle to uni and then swim later in the day), I thne got lots of weird symptoms that just couldn not be diagnosed until finally I put my foot down and said I needed to see a neuro (MS runs in my family), he told me it was likely MS but that I really didnt' need to know as it would look bad on my occ health record, then I finally got in for an MRI and was diagnosed.  I muddled along quite well for years but recently its all got a bit much for me.
06 Jun 2012 at 5:09PM
I honestly don’t think it had anything to do with Roy Rogers horse.  Perhaps it was all due to a misaligned Atlas, but who knows.
06 Jun 2012 at 5:38PM
I had epstein barr whilst at university, also taking exams, thus major headache and stress.

I had weird symptoms like dropping to the floor unexplained, types of fit like symptoms, shakes, weakness, then ON, numbness and major fatigue, then diagnosis.

A great deal of unexplained happenings quite a good few years beforehand but never explained, so I think now Ive had ms for a lot longer pre diagnosis.

With me I would say stressful times probably masked ms symptoms yet in another way highlighted them.  Masked in that I had a lot to deal with, then highlighted when they never left me.  Does that make sense?

bren
x

06 Jun 2012 at 5:49PM
Hi, I don't think there was a trigger, I was dx aged 50 but looking back I probably had for a few years previously. I did have a very bad case of glandular fever when I was eighteen . Karen
06 Jun 2012 at 6:01PM
I believe I have had MS for a very long time but chose to ignore the symptoms as they went away and didn't impact on my life. The year before dx however; I overdid things big time, no longer looked after my health, no longer had time to rest between work and home, My immune system hit rock bottom and was followed by a very bad relapse which eventually affected most of my left side. I had an MRI and was given a dx more or less straight away. I don't know what the original trigger was only that my mum had R/arthritis and I have been told that is my genetic connection. 
Stress over the past 10 years has not helped it.
Wendyxx
06 Jun 2012 at 6:01PM
believe I have had MS for a very long time but chose to ignore the symptoms as they went away and didn't impact on my life. The year before dx however; I overdid things big time, no longer looked after my health, no longer had time to rest between work and home, My immune system hit rock bottom and was followed by a very bad relapse which eventually affected most of my left side. I had an MRI and was given a dx more or less straight away. I don't know what the original trigger was only that my mum had R/arthritis and I have been told that is my genetic connection. Epstein Barr virus and vitamin D are also linked to that too.
06 Jun 2012 at 6:02PM
hi there, i didnt know i had anything wrong with me until i was 28. but i did have glandular fever when i was 14. and one of my doctors said something along the lines of that being a part of it...so you never know. as i got to 28 and never noticed anything else. x
efb
06 Jun 2012 at 6:03PM
Tetanus injection
06 Jun 2012 at 6:19PM
i had bell's palsy when i was 17. then no problems until i was 49.
that year i overdid things big time resulting in my dx a year later.
my auntie had ms in the 1960's.
my neuro nodded to every one of these when i told him but said it only meant that i was more prone to ms.

carole xx
06 Jun 2012 at 6:20PM
Hi There,
I took quite unwell after I had my wee boy - this was put down to a virus although all the tests for MS were conducted (unknown to me).
One year later the exact same condition returned and I received my diagnosis of MS.
My consultant at the time said it was common for woman to develop symptoms after having a baby???
Jo

06 Jun 2012 at 7:06PM
Hi there,
I had glandular fever at 19 when I was at uni and think this may have been what triggered MS.
Teresa xx
06 Jun 2012 at 8:24PM
glandular fever is used quite alot in these posts maybe there is something in this..
06 Jun 2012 at 10:43PM
Stress and heartache
06 Jun 2012 at 11:06PM
My bloods during the diagnosis process, showed my body had been trying hard to fight a virus. I was unaware I'd had a virus.
Due to extensive lesions, the Neuro said I could have had MS for years but who knows!
Anonymous
07 Jun 2012 at 1:30AM
I do wonder if there was a trigger, meningitis aged 18 months but followed by 23 years in the RAF and 15 vears travelling arounf oil platforms fixing gas turbine generators.
Arrived home with gastric discomfort which was diagnosed as peritonitis ,a bowel resection, followed by 10 weeks off work,was (eventualy) diagnosed as having  PPMS.
Who knows?       
07 Jun 2012 at 8:55AM
Shingles.  The first MS symptoms turned up in the same place 3 months later.
Alison
x
07 Jun 2012 at 9:41AM
Hiya
For me I can point it to Chicken Pox that I got from my nephew when I was 20 years old.  Who knows though?  Was that the trigger' reacting to a certain type of gene that I had?  All I know is that from that point onwards there has been a slow slippery down hill curve with more and more symptoms.  



Marty

07 Jun 2012 at 10:15AM
Mine was after I gave birth to my eldest son 17 years ago he was quite poorly after he was born and spent a few weeks in hospital it was then I developed ON.  Never had any symptons prior to that for me it was definately childbirth and the stress afterwards!
07 Jun 2012 at 10:30AM
I have always been prone to tonsillitis but in spring 2010 I had suspected glandular fever. I muddled on and a couple of months later had a strange case of pins and needles in my hands and torso which no one took particularly seriously (myself included) so I pretty much ignored it and got used to it. I then had what was diagnosed at the time as labrynthitis (nasty) and had my first clinical relapse in July 2011.
My first relapse coincided with a particularly stressful period in my life. I was dumped in spectacular fashion, a week later I was maid of honour at my mums wedding (part of the job entailing sorting out family disputes) then 2 weeks after that I was at a particularly harsh interview for my dream job. During this interview I lost the use of my right hand side.
Although anything could have triggered the ms to start I believe it was this stressfull period in my life which exacerbated the symptoms and made the relapse really bad.
I was diagnosed as a consequence of this relapse (and the optic neuritis that followed) and today I am going for my 4th tysabri infusion. If nothing else that stressful period led to my unexplained symptoms being explained, I'm on treatment to help and I will have the support of medical professionals for the rest of my life. All in all I'd say it's a good thing that I had to go through that so I could get to where I am today.
07 Jun 2012 at 12:51PM
This is such an interesting subject - we have discussed it several times ,on this, and the old site. l had a very severe case of shingles - which did take me a long time to get over. Then l became pregnant - and that was the start of my MS symptoms. My MS has been SPMS from the start - and its now 30yrs. l have had shingles three times now - not in the same place. Personally, l believe that vitd3 deficiency was the key - which is why l am always 'plugging it' especially for newbies - and young women thinking of having a baby.
Before MS - l was physically very fit and well - l have never drunk or smoked - can't say l have ever done anything to compromise my health - so nothing to blame it on. l have taken high dose vit d3 for the last 3yrs - as l have osteo- arthritis in my hip/knee/ankle - and l did fall and fractured my ankle - this is my 'good leg' not the ms one - which justs hangs there all floppy. Since taking a highdose vitd3 20.000ius for over 2yrs - now down to 10.000ius my bone-density has improved and my vitd3 levels are higher but still not as high as they should be. When first tested they were rock bottom. Now they are about 98 [ Need to be 175/225]
So its keep taking the tablets and l use a sun-bed occasionally - and try to get as much sunshine as possible.
F.
07 Jun 2012 at 1:52PM
Ok This is just mine: I was born boss eyed (blind, had it corrected) also had epilepsy until I was 11. Always had troubles in school so they all thought I was dyslexic but I was not.
Even as a child I was always tired and not well so I did badly in school because of this.
I had my first real attack when I was 20 but I do feel it has always been there.
Stress and upset seem to help towards with relapses now tho. I guess there is no real answers to MS yet its so complex.
07 Jun 2012 at 2:01PM
Really interesting discussion.
Looking back, I had what could've been the first symptoms from early childhood - very weak bladder, total inability to control urgency. I definitely won't tell you the story of the sink in my bedroom...
I think my first adult relapse/batch of symptoms was triggered by an operation I had in 2005 - was supposed to be a fairly routine op, under general, to remove a large lump of scar tissue (a 10 year old injury) on my hip/buttock. The op was much more complicated than expected and the surgeon had to do an awful lot of digging around. I (and neuro agrees) believe that the trauma to my nervous system during the op triggered what had been lying dormant. My right big toe went numb the day after the op, then over the course of the following months the numbness spread upwards and all the other niggles reared their ugly heads. That was the beginning!
07 Jun 2012 at 2:22PM

KIMOSABY,

SMALLPOX VACCINATION

GEORGE
07 Jun 2012 at 2:28PM
Dear 'goodtotalk',
I went to University, but I was sure that I didn't know what my what 'diagnosis' was? It was (about 39 when I first discovered 'MS' - I'm 56 now) - I 'read' the MS websites but I don't know what 'caused' it ?
Marcus.

07 Jun 2012 at 2:58PM
I'm still in limbo but I was the most energetic child ever then had Glandular Fever aged 15 which left me wiped out for months.
I recovered fully but when I had my 2nd daughter when I was 23 my thyroid stopped working at all. I got over that but then again at probably age 28 I had about 6 weeks of total debilitating fatigue and doc thought I had glandular fever again. My arms were weak and I was pathetic. The blood tests didn't give a reason. I've often had unexplained month long 'extra-tired' times but never so bad as that original one until March 2011. Then, the bloods showed very low lymph and platelets but no explanation.
Then wham, in November, the neurological stuff started big time and I had a full 2 month 'attack' of very MS like symptoms. I've improved hugely since New Year but have never recovered properly: I'm still spazzing, jerking, more tired, buzzing, prickling, twitching, burning, weak, weird feeling skin.
crying1
07 Jun 2012 at 3:26PM
My GP at the time (when I was 17) assumed that I "might have glandular fever" because I was extremely depressed, and I felt totally exhausted - even when I had just got out of bed. I couldn't talk to anyone, and no one else could talk to me. Then I developed optic neuritis, and the party really began!!
                              Best Wishes all,
                                            Moira
 
 
I haven't the slightest idea,tbh.
However,I was born and brought up in Scotland.
I do bottle things up A LOT.So stress maybe?
Pure bad luck anyway.I try not to think along the lines of 'why me?'.It's a waste of my time and energy to do so.I've got it and it won't go anyway,no matter what I do.I try and ignore it when I can but I don't fight it.There's no point.
Brenda x
08 Jun 2012 at 12:12PM
I got chicken pox when I was 25 and was also having vague dental pains which the dentist couldn't find out what was causing them. I had my first child at 26 and second child at 28, then started feeling giddy,lethargic. Got dx with RRMS at age of 30.
08 Jun 2012 at 12:33PM
Hi!

I'd like to thank you all for being so candid. its been very enlightening and is very important, to guage an accurate picture of contributing factors. So thank you again.
anu
08 Jun 2012 at 2:43PM
whammel wrote:
I honestly don’t think it had anything to do with Roy Rogers horse.  Perhaps it was all due to a misaligned Atlas, but who knows.
I'm tending to blame a misaligned atlas, candida and a tank full of goldfish.......