I DON'T BELIEVE MS IS A DISEASE THAT IS REAL
I DON'T BELIEVE MS IS A DISEASE THAT IS REAL
12 Aug 2013 at 6:24PM
I think patients are mislead into believing they have ms when
in fact they don't. What are your views? Old age can cause spots on a
MRI too.
12 Aug 2013 at 6:59PM
But most people aren't diagnosed in old age, are they? Why
should their MRIs show features of "old age" when they're not old? And
why would they be undergoing investigations in the first place, if they
didn't have some pretty significant symptoms? People don't usually go
to the doctor complaining of being "old"; they complain of being ill!
So what would you suggest is the nature of their illness, if, in your
opinion, it is unrelated to any abnormal MRI findings?
Do you, perhaps, feel you've been wrongly diagnosed yourself, and are clinging to the hope that anomalies found on MRI are just natural ageing?
I can understand the temptation to think that way, but if I'm honest, I think it's more common the other way round - that a few people with MS are wrongly told brain changes are "natural" - particularly if they are first investigated later in life.
Tina
Do you, perhaps, feel you've been wrongly diagnosed yourself, and are clinging to the hope that anomalies found on MRI are just natural ageing?
I can understand the temptation to think that way, but if I'm honest, I think it's more common the other way round - that a few people with MS are wrongly told brain changes are "natural" - particularly if they are first investigated later in life.
Tina
Well may be you can tell me what is wrong with me then, because it has [filtered word] all to do with old age!!
A bit of your own history would be nice along with a sweeping statement such as the disease I have been diagnosed with isn't real.
It is not my intention to be rude but I am very tired and very sensitive at the moment.
Sam
A bit of your own history would be nice along with a sweeping statement such as the disease I have been diagnosed with isn't real.
It is not my intention to be rude but I am very tired and very sensitive at the moment.
Sam
12 Aug 2013 at 7:17PM
I don't mean to be rude or insensitive but even younger
people can have spots on a brain MRI and be healthy people. Or their
symptoms won't be ms it will be lyme disease misdiagnosed as ms. How
come after years of research there is no cure for ms..because its lyme
disease its a huge cover uo so pharma can reap the cash.
12 Aug 2013 at 7:18PM
O bands are also seen in lyme too.
12 Aug 2013 at 7:23PM
Why about in the uk where our treatment is free? I ha blood tests, it was not Lyme disease.
Do you have ms?
Do you have ms?
12 Aug 2013 at 7:25PM
What a ridiculous thing to say! Sorry but can't believe you think that it's a big cover up and it's actually Lyme disease.
Cancer research has been going on for longer than ms research and they haven't found a cure for that yet!
Cancer research has been going on for longer than ms research and they haven't found a cure for that yet!
12 Aug 2013 at 7:27PM
Oh, I see, another conspiracy theorist. 
Lyme disease is tested for as standard, during MS investigations.
If you have MS, or are suspected of having it, you will find support here. However, if you believe it does not exist, and is a conspiracy, then, whether you mean to be or not, it IS offensive to those of us who have it, and accept we have it, to claim it "does not exist".
I'm not sure how those who accept their diagnoses can help or support someone who thinks it's all fraudulent.
Tina
Lyme disease is tested for as standard, during MS investigations.
If you have MS, or are suspected of having it, you will find support here. However, if you believe it does not exist, and is a conspiracy, then, whether you mean to be or not, it IS offensive to those of us who have it, and accept we have it, to claim it "does not exist".
I'm not sure how those who accept their diagnoses can help or support someone who thinks it's all fraudulent.
Tina
12 Aug 2013 at 7:41PM
Well Nazra I'm gobsmacked that you have the balls to say that
on this forum, spots on a MRI can be caused by other things however I
trust my consultant to know a MS lesion as she is a specialist in this
area. What medical experience do you have? are you in the process of
being diagnosed with MS? Do you have neurological symptoms which suggest
MS? If not I suggest you live in our world for a day and then tell me
it's the drugs company misleading us for profit!
12 Aug 2013 at 7:42PM
i dont believe someone bitter and nasty should even be on
the site for people who are truely suffering i think you are a very
bitter and twisted person ,people on here struggle day to day.Just
because you clearly have not got anything wrong with you.Well said tina
12 Aug 2013 at 7:47PM
lymes diease can kill you if left untreated [deleted by Moderator]
12 Aug 2013 at 8:00PM
Yeh they think i have ms because my LP camr positive for o
bands and mri shows wgite spots. So what that doesnt mean jack to me
that can happen in a host of diff diseases and its common in lyme too
which i asked myself for them to carry out i had to go through powels. I
got the blood test done of my own back i have right hand sided pain for
a year and a stiff neck sometimes gets worse sometimes its bearable i
have headaches too and i get really tired i dont trust any of the
specialist they too busy pocketing money of their private parients using
nhs resources, while they neglect ppl like us they just want to lumbar
patients with the most common diagnoses and fail to look for other
causes ive read so many articles written by real people who had lyme
ended uo in wheelchairs and neuro tols them they had ms. Then they had
lyme tests came positive and they recovered in four days. Also they
lymes test is a xlinical one the blood test is [edited] in the uk. I am
going to ask my infectious diseases consultant to give me the standard
antibiotics for lyme and see if i improve rather than inject my self
with harmful steriods for a disease that is very shady.
12 Aug 2013 at 8:04PM
Have you all been tested for lyme whats all your vit b tests
are you all in good health regarding your vitamins and minerals? Did you
know as ms patients you need a higher intake of vit d and vit b have
your darling specialists told you this....
Wow
I thought maybe you were new to this and scared. We have all been there.
We don't need comments like "have your darling specialists told you this" Its just patronising rubish i can do without.
Darren
I thought maybe you were new to this and scared. We have all been there.
We don't need comments like "have your darling specialists told you this" Its just patronising rubish i can do without.
Darren
12 Aug 2013 at 8:13PM
Nazra, to contract Lyme disease you have to have been bitten
by an infected tick. For this you would have had to have spent alot of
time either in forests or on moors or heaths. It is not something
prevelant in cities. You would almost certainly have a red circular
rash. As for saying the tests are no good in the UK that is cobblers.
Living in a rural area our doctors are very hot on the symptoms and
would home in on it before suggesting anything else. It is a last call
situation being told you have MS. If anything you get told it is other
things first and MS Last. I guess if you were hoping to get a reaction
by posting something as insensitive as this then it worked!!
12 Aug 2013 at 8:19PM
Ano what u on about ??
Only 30% of people have a rash ticks are so tiny some people dont remember being biten i went to pakistan in kasmir spent ages in woods went for long walks too.
Only 30% of people have a rash ticks are so tiny some people dont remember being biten i went to pakistan in kasmir spent ages in woods went for long walks too.
12 Aug 2013 at 8:21PM
Darren think outside of the box doctors are not gods as i
have unfortuantley realised they are [edited] no one aty gp surgery knew
what lyme was....er ok
12 Aug 2013 at 8:24PM
My specialist will have to write me a letter if my test comes
back negative that he refuses to give me antibiotics as a trial btw i
had tb in my lungs ive just recivered from that so thats one of the
things they are rulinh out just recovered from tb now they saying ms.
12 Aug 2013 at 8:29PM
I rang the ms society research centre today there was one
member of staff available who start stuttering when i asked her what are
the latest plans of action youve taken to help research drugs that will
repair mylien instead of awful drugs that bide patient by making them
worse...she had nithing to say i said wheres the main boss she goes in a
meeting i go so the funds you recieve are going towards meeting and tea
and coffee?
I guess you are scared and feeling very alone, hence all the horrible replys you give people.
I won't bite back at you i know we don't know alot about ms. But i have shown clear signs that i have ms. I am going thru a relapse at the mo.
The doc's maynot be gods but they seem to be my best chance at the mo.
Darren
I won't bite back at you i know we don't know alot about ms. But i have shown clear signs that i have ms. I am going thru a relapse at the mo.
The doc's maynot be gods but they seem to be my best chance at the mo.
Darren
12 Aug 2013 at 8:37PM
Nazra, I'm not sure whether you are writing your comments to
get a reaction from people or whether you are in denial of a possible MS
diagnosis, either way they are not welcome.
12 Aug 2013 at 8:39PM
Darren your already going througj so much would it be
possible for you to ask for lyme antibiotics for two weeks see how you
feel. Thats what i will do if i reciver i will let you all know. Im just
creating awareness i dont trust these doctoctors at all. Did u have o
bands in ur LP.
12 Aug 2013 at 8:43PM
Nazra, I'm not sure whether you are writing your comments to
get a reaction from people or whether you are in denial of a possible MS
diagnosis, either way they are not welcome.
Ok prove me wrong. How many of you guys have had a LP SHOWING O bands
and what have your neuros ruled out because cns infections can cause
demyenation too. So can tb so can tumours so can lyme etc. Gullian bare
syndrome
12 Aug 2013 at 8:49PM
Great you've read wikipedia! Presence of O Bands is also
apparent in Syphillis, however I like many others on this site have been
through numerous tests, blood tests, MRIs, LPs etc as the last thing
the neuro wants to confirm is that it is actually MS. They rule out
every other possibility before they eventually confirm that it is, which
is why it took 4 years to get my diagnosis. So if you want to put
antibiotics into your body that are not necessary, go ahead but I am
happy in the knowledge that my consultant knows best.
12 Aug 2013 at 8:51PM
Nazra - the blood tests for Lyme disease are strategically
tested throughout the uk. If a blood test wasn't carried out for you
then that is unfortunate but routinely blood tests are done for Lyme
disease.
Most people on here are aware of vitamin d and vitamin b levels and I would say that a lot of consultants are also aware of this and vitamin d now does seem to be a blood test that is carried out in the ms testing process.
It sounds to be honest that you are in denial and clutching at straws but I hope that it is just lymes disease in your case and if not then everyone on here are a friendly bunch so will be here to chat should you need to.
Most people on here are aware of vitamin d and vitamin b levels and I would say that a lot of consultants are also aware of this and vitamin d now does seem to be a blood test that is carried out in the ms testing process.
It sounds to be honest that you are in denial and clutching at straws but I hope that it is just lymes disease in your case and if not then everyone on here are a friendly bunch so will be here to chat should you need to.
12 Aug 2013 at 8:51PM
So how come they are diagnosing me with one lp then
12 Aug 2013 at 8:51PM
I have had all sorts of tests as at first I was sen to a
stroke clinic! My neuro is very goo at his job, my relapses have been in
line with those of ms.
Lyme disease does not cause optic neuritis.
Denial is one if the stages you go through when being diagnosed, I did, I felt angry scare all sorts! I so wanted it to be Lyme disease, but unfortunately there is nothin we can do. You have I learn to accept your diagnosis and then begin kickin it's ass.
Disease modifying drugs are made up of natural components in our bodies anyway called interferon beta alpha 1.
I'm sorry you're feelin this way. I hope you can come to terms with things soon.
Lyme disease does not cause optic neuritis.
Denial is one if the stages you go through when being diagnosed, I did, I felt angry scare all sorts! I so wanted it to be Lyme disease, but unfortunately there is nothin we can do. You have I learn to accept your diagnosis and then begin kickin it's ass.
Disease modifying drugs are made up of natural components in our bodies anyway called interferon beta alpha 1.
I'm sorry you're feelin this way. I hope you can come to terms with things soon.
12 Aug 2013 at 8:58PM
shes just trying to wind everyone up dont bite get it lol,
bite from ticks.Just roll it off your back like a duck to water xxxx
julie
12 Aug 2013 at 9:00PM
I do hope you find some respite from your obvious anger and
resentment. We all at some point have to rely on experts in all walks
of life to help us be it mechanics to fix cars, builders, therapists,
and of course doctors. If you are unhappy with your doctor seek a
second opinion and by all means question what they say but a little
sensitivity would probably be appreciated by those on the forum bringing
words of wisdom and support to many of us seeking it.
12 Aug 2013 at 9:00PM
shes just trying to wind everyone up dont bite get it lol,
bite from ticks.Just roll it off your back like a duck to water xxxx
julie
R u blonde r u all blondeI like to think out the box.
12 Aug 2013 at 9:02PM
at least i can spell lol
shes just trying to wind everyone up dont bite get it lol, bite from ticks.Just roll it off your back like a duck to water xxxx julie
Rather than using balls in my earlier post I was going to say I don't know how you have the nerve but I thought that wasn't the right choice
hee hee hee
I like to think out the box.
You have to say it as it is. Ppl prob have a comfort zone they are afraid to vebture out of.
Liz
Dr Kenton also has a very good reputation with patients and staff.
There are three dedicated MS Nurses who will reply to messages left on the answephone within 24 hours. There is also a day unit for patients on Tysabri and those getting steroids - staff there are great [pat and Di].
Liz
Dr Kenton also has a very good reputation with patients and staff.
There are three dedicated MS Nurses who will reply to messages left on the answephone within 24 hours. There is also a day unit for patients on Tysabri and those getting steroids - staff there are great [pat and Di].
Liz
How were you diagnosed. Dr kenton hasnt replied to any of my emails.
Wont the government help me as im in constant pain camt do things like
everyone else extra cash or help driving arm kills me all the time.
Dr Kenton also has a very good reputation with patients and staff.
There are three dedicated MS Nurses who will reply to messages left on the answephone within 24 hours. There is also a day unit for patients on Tysabri and those getting steroids - staff there are great [pat and Di].
Liz
How were you diagnosed. Dr kenton hasnt replied to any of
my emails. Wont the government help me as im in constant pain camt do
things like everyone else extra cash or help driving arm kills me all
the time.
I was diagnosed in the dark old days when there were no MRIs. My
diagnosis was based on history, clinical findings and LP and by ruling
out other conditions [Hughes, Lymes etc].
I have had a number of MRIs since Dr Shehu took over from my previous Consultant [retired] but there was never any doubt about the diagnosis.
Liz
Bit rude there mate - Tina was the first person to have the courtesy to reply to you. If you read your replies, you'd know that.
Bit rude there mate - Tina was the first person to have the courtesy to reply to you. If you read your replies, you'd know that.
Actually they replied. So did their secretaries. I tried the cosy
nicey nice way wasnt working so i basically cussed them without swearing
but i got the message accross now they all replied. Thats what powels
and the cheif executives offices are for. To give them a jogg along far
too much time.is wastes on bueracy and pointlesa meetings than on
actually speeding up care and treatments.
shes just trying to wind everyone up dont bite get it lol, bite from ticks.Just roll it off your back like a duck to water xxxx julie
Rather than using balls in my earlier post I was going to say I don't know how you have the nerve but I thought that wasn't the right choice
hee hee hee
12 Aug 2013 at 9:07PM
Er no i am not in denial why should i blindly accept a
diagnises from a neuro when i can read and have the ability to seek a
differential diagnoses.
12 Aug 2013 at 9:07PM
at least i can spell lol
Lmaoo its this dam touch screen phone.
12 Aug 2013 at 9:10PM
shes just trying to wind everyone up dont bite get it lol,
bite from ticks.Just roll it off your back like a duck to water xxxx
julie
R u blonde r u all blondeI like to think out the box.
12 Aug 2013 at 9:13PM
It's clear that you don't want to accept the diagnosis and
that's fine that's your personal choice. Earlier on you said you'd had
MRI and lp and blood tests - now your implying that you've only had lp.
Something doesn't quite add up with your story and I suspect that you are probably just here for fun and I would suggest that the moderators take a look at this as something seems off here
Something doesn't quite add up with your story and I suspect that you are probably just here for fun and I would suggest that the moderators take a look at this as something seems off here
12 Aug 2013 at 9:20PM
It's
clear that you don't want to accept the diagnosis and that's fine
that's your personal choice. Earlier on you said you'd had MRI and lp
and blood tests - now your implying that you've only had lp.
Something doesn't quite add up with your story and I suspect that you
are probably just here for fun and I would suggest that the moderators
take a look at this as something seems off here
No i said i had an lp and an mri somrone said they had lots of bloods
done i havent i only had vit b and d which i got done from my gp
myself. Maybr my neuro will do them for me. But they wrote to my gp
saying based on my o bands in csf and mri its ms. How can they say that
when my neurological examination showed nothing.
12 Aug 2013 at 9:21PM
I got the lyme done by hounding my infectious diseases consultant who finally gave in and ive it done today.
12 Aug 2013 at 9:26PM
So you all on the nhs who r these fantastic consultants ive
emailed both of mibe asking nine qs im seeing them in eight days. Im
from coventry.
12 Aug 2013 at 9:37PM
A numerological examination doesn't necessarily show any
problems - especially if you have them done outside of a
relapse/episode.
Spots on an MRI look different in Lyme disease than lesions on an MRI in ms- neurologists and radiologists know what to look for and are trained in being able to differentiate between the two.
I understand that you are going to look for every alternative diagnosis because its part of the process in dealing with the diagnosis. The question I have is that you must have presented to the gp with neurological problems/symptoms for them to refer you to the neurologist. It's worth pointing out that the statistics of having neurological symptoms presenting in Lyme disease is actually only around 12% of people so quite a low number.
Spots on an MRI look different in Lyme disease than lesions on an MRI in ms- neurologists and radiologists know what to look for and are trained in being able to differentiate between the two.
I understand that you are going to look for every alternative diagnosis because its part of the process in dealing with the diagnosis. The question I have is that you must have presented to the gp with neurological problems/symptoms for them to refer you to the neurologist. It's worth pointing out that the statistics of having neurological symptoms presenting in Lyme disease is actually only around 12% of people so quite a low number.
12 Aug 2013 at 9:48PM
A
numerological examination doesn't necessarily show any problems -
especially if you have them done outside of a relapse/episode.
Spots on an MRI look different in Lyme disease than lesions on an MRI
in ms- neurologists and radiologists know what to look for and are
trained in being able to differentiate between the two.
I understand that you are going to look for every alternative diagnosis because its part of the process in dealing with the diagnosis. The question I have is that you must have presented to the gp with neurological problems/symptoms for them to refer you to the neurologist. It's worth pointing out that the statistics of having neurological symptoms presenting in Lyme disease is actually only around 12% of people so quite a low number.
No i dont believe they are tbh they are trained but i wouldnt accept
rhings from them 100percent. You have to ask qs and be proactive. My
sister was told from mris pet scans ct scans she had cancer sarcodosis
lympoma after five years she took tb tablets and recovered so what
happended to the training.I understand that you are going to look for every alternative diagnosis because its part of the process in dealing with the diagnosis. The question I have is that you must have presented to the gp with neurological problems/symptoms for them to refer you to the neurologist. It's worth pointing out that the statistics of having neurological symptoms presenting in Lyme disease is actually only around 12% of people so quite a low number.
12 Aug 2013 at 9:58PM
What symptoms did you present with and how long ago?
12 Aug 2013 at 10:28PM
Some doctors think that MS is a symptom of another separate
disease(s) which is why it effects people so differently - ie2 people
have MS which follow different paths because their cause is different.
One of the many suggested triggers for MS is the epston barr virus.
Finding a cure will depend on finding the causes.
Moyna xxx
Moyna xxx
12 Aug 2013 at 10:36PM
There is no cancer called "sarcoidosis lymphoma". Did your
sister have lymphoma (a form of cancer), or did she have sarcoidosis?
If the latter, it's prone to spontaneous remission, and sometimes
complete resolution. If this happened, it wouldn't mean the diagnosis
was wrong.
I'm sorry you are finding your diagnosis (or is it probable diagnosis?) of MS so hard to accept. I do understand your need to hope there's been a mistake. I'm sure we've all hoped that, at some stage (those who have travelled this route, that is). Even though I needed the payout, I can remember being disappointed my insurance company didn't challenge the diagnosis. At the back of my mind, I was still hoping they would argue I didn't have MS - and be right! But they were completely satisfied with the evidence, so I understood, then, that I must have it.
I'm not saying mistakes can't ever happen. Yes, it is possible, and you're entitled to a second opinion. But to denounce MS diagnosis as what would, in effect, be massive criminal conspiracy, because you don't want to believe you've got it seems disproportionate, and unlikely to benefit you or others.
I'm curious, why did you go to the doctor, if you don't trust or believe them?
Tina
I'm sorry you are finding your diagnosis (or is it probable diagnosis?) of MS so hard to accept. I do understand your need to hope there's been a mistake. I'm sure we've all hoped that, at some stage (those who have travelled this route, that is). Even though I needed the payout, I can remember being disappointed my insurance company didn't challenge the diagnosis. At the back of my mind, I was still hoping they would argue I didn't have MS - and be right! But they were completely satisfied with the evidence, so I understood, then, that I must have it.
I'm not saying mistakes can't ever happen. Yes, it is possible, and you're entitled to a second opinion. But to denounce MS diagnosis as what would, in effect, be massive criminal conspiracy, because you don't want to believe you've got it seems disproportionate, and unlikely to benefit you or others.
I'm curious, why did you go to the doctor, if you don't trust or believe them?
Tina
13 Aug 2013 at 12:53AM
Nazra you seem very angry, I'm sorry you're having a bad time
dealing with the information you've been given by the experts, but the
fact is by coming on a MS forum and making nonsense comments about a
medical condition that affects every single user on here in some degree
or other isn't going to help you or anybody else. It is very upsetting
to read your views and opinions on something that we on here are all
dealing with. Personnally I'm offended.
You should be more respectful towards the people who come on these boards. As far I'm concerned this is a nonsense free zone and it should stay that way.
Remember that this is peoples lives, families and carers etc, We all try to support each other however we can, one way we support each other is by taking peoples MS and probelms SERIOUSLY.
I geniunely hope that you seek some help and have a change of attitude towards other peoples feelings in the future.
Becky
You should be more respectful towards the people who come on these boards. As far I'm concerned this is a nonsense free zone and it should stay that way.
Remember that this is peoples lives, families and carers etc, We all try to support each other however we can, one way we support each other is by taking peoples MS and probelms SERIOUSLY.
I geniunely hope that you seek some help and have a change of attitude towards other peoples feelings in the future.
Becky
13 Aug 2013 at 6:19AM
Its not nonesense go research it. Lol.
13 Aug 2013 at 7:33AM
I think your first argument about the drugs companies reaping
the cash and it being a big cover up is just ignorant. My research
shows that my DMDs cost the NHS £18000 per year, but if left untreated,
my MS could eventually go on to cost the NHS £80-90k per year in care
and rehabilitation! Not exactly a good logic to misdiagnose is it? And
then explain why my nan was diagnosed in an age when there were NO
drugs treatments! She didn't exactly make anyone lots of money, she was
technically a drain from the moment she started deteriorating...carers,
hospital admissions, adaptions, equipment...
Maybe a minority of people are misdiagnosed, but that's because you can't actually confirm MS until autopsy! It's a case of ruling out everything possible to give the most likely diagnosis. If your consultant hasn't done this, I suggest you ask for a second opinion. But do NOT assume that all of us have been misdiagnosed - I had comprehensive tests and referrals to various other specialists and I'm satisfied that I've been correctly diagnosed. That's NHS and private!
Maybe a minority of people are misdiagnosed, but that's because you can't actually confirm MS until autopsy! It's a case of ruling out everything possible to give the most likely diagnosis. If your consultant hasn't done this, I suggest you ask for a second opinion. But do NOT assume that all of us have been misdiagnosed - I had comprehensive tests and referrals to various other specialists and I'm satisfied that I've been correctly diagnosed. That's NHS and private!
13 Aug 2013 at 9:42AM
I
think your first argument about the drugs companies reaping the cash
and it being a big cover up is just ignorant. My research shows that my
DMDs cost the NHS £18000 per year, but if left untreated, my MS could
eventually go on to cost the NHS £80-90k per year in care and
rehabilitation! Not exactly a good logic to misdiagnose is it? And
then explain why my nan was diagnosed in an age when there were NO drugs
treatments! She didn't exactly make anyone lots of money, she was
technically a drain from the moment she started deteriorating...carers,
hospital admissions, adaptions, equipment...
Maybe a minority of people are misdiagnosed, but that's because you
can't actually confirm MS until autopsy! It's a case of ruling out
everything possible to give the most likely diagnosis. If your
consultant hasn't done this, I suggest you ask for a second opinion.
But do NOT assume that all of us have been misdiagnosed - I had
comprehensive tests and referrals to various other specialists and I'm
satisfied that I've been correctly diagnosed. That's NHS and private!
This is a very good answer its not patronising and its well informed
can i ask what other tests did your consultant do? Am i being robbed of
certain tests Did you have o bands in your lumbure puncture.
13 Aug 2013 at 9:46AM
If you have an infectious disease consultant ,you must have
an infectious disease and things like AIDS TB can cause brain issues
.As most people know unless you are a qualified specalist in field of
medicine or qualified medical consultant.You have neither the
qualifacations of knowlegde to mock others .
13 Aug 2013 at 9:46AM
When you say ruling out how would one rule out lyme when the
tests are so lame ? Autopsys have confirme lyme in dead people who had
ms..i think i shpuld take lyme antibiotics and see if they help just
like i did with tb nothing was coming up in any tests i knew it was tb
but we had no serelogical proof i began treatment ans was better within
one week now i have clean chest xrays maybe the lesiona will clear up
after treatment of lyme as it has done for others in the uk worth a
shot.
13 Aug 2013 at 9:50AM
If you have an infectious disease consultant ,you must have an
infectious disease and things like AIDS TB can cause brain issues .As
most people know unless you are a qualified specalist in field of
medicine or qualified medical consultant.You have neither the
qualifacations of knowlegde to mock others .
Yes i have tb in my lungs ive taken my treatment had a recent chest
xray erm excuse me im facing an ms diagnoses myself am i laughing here.
Grow up i am being proactive in my care lyme is so similar to ms even on
mri just lyme spots are slightly smaller even tb can cause myelin
damage and even o bandsi read this in a very reputable medical journal
im not just using random websites. 
So
you all on the nhs who r these fantastic consultants ive emailed both
of mibe asking nine qs im seeing them in eight days. Im from coventry.
I am also in Coventry. IMO the neuro team responsible for patients with MS are excellent. Who is your consultant?Liz
13 Aug 2013 at 9:55AM
have you been tested for BRAIN TB?
13 Aug 2013 at 9:56AM
brain TB affects the brain and spinal cord
13 Aug 2013 at 9:59AM
have you been tested for BRAIN TB?
R u waqawan!! My dr is dr kenton and dr gowda dr kenton has let me
down ivegot appointment with him next week he says i test positive for o
bands. What can i expect.
13 Aug 2013 at 10:00AM
have you been tested for BRAIN TB?
I had a lumbure puncture but afb didnt grow anything in the lab.
13 Aug 2013 at 10:01AM
Efb hiya homie. Dr kenton.
Efb hiya homie. Dr kenton.
If you do get a diagnosis of MS and meet the criteria for treatment
with DMDs you will probably be passed to Dr Shehu [my consultant. He is
an excellent Neuro and a really good guy.Dr Kenton also has a very good reputation with patients and staff.
There are three dedicated MS Nurses who will reply to messages left on the answephone within 24 hours. There is also a day unit for patients on Tysabri and those getting steroids - staff there are great [pat and Di].
Liz
13 Aug 2013 at 10:14AM
Efb hiya homie. Dr kenton.
If you do get a diagnosis of MS and meet the criteria for treatment
with DMDs you will probably be passed to Dr Shehu [my consultant. He is
an excellent Neuro and a really good guy.Dr Kenton also has a very good reputation with patients and staff.
There are three dedicated MS Nurses who will reply to messages left on the answephone within 24 hours. There is also a day unit for patients on Tysabri and those getting steroids - staff there are great [pat and Di].
Liz
13 Aug 2013 at 10:19AM
I had full blood works twice over, privately and NHS - testing for all the usual vitamin deficiencies, thyroid, infections etc.
Clinical and neurological examinations by doctor and four neurologists.
I was referred to a haematologist to rule out blood issues (mainly Hughes Syndrome and similar) as I'd had a history of blood problems and had another blood work up for these things (nine vials of blood!).
I also went for two chest X-rays and to a chest specialist to rule out sarcoidosis (I got diagnosed with asthma alongside the MS).
In addition, my previous symptoms (numb and painful fingers and double vision) had been invesitaged by the relevant specialists privately and were assumed to be carpal tunnel syndrome and just 'lazy eyes', as there was no obvious cause.
Two MRIs (private then NHS) after I ended up in A&E thinking I'd had a stroke (slurred and laboured speech, blurred vision).
I actually refused to have a lumbar puncture as everything pointed to MS and my consultant said that even if the LP was negative, it wouldn't affect the diagnosis as they can sometimes be wrong. A lumbar puncture is not actually required for the diagnosis if the MRI and clinical history points to MS.
Hope this helps
Clinical and neurological examinations by doctor and four neurologists.
I was referred to a haematologist to rule out blood issues (mainly Hughes Syndrome and similar) as I'd had a history of blood problems and had another blood work up for these things (nine vials of blood!).
I also went for two chest X-rays and to a chest specialist to rule out sarcoidosis (I got diagnosed with asthma alongside the MS).
In addition, my previous symptoms (numb and painful fingers and double vision) had been invesitaged by the relevant specialists privately and were assumed to be carpal tunnel syndrome and just 'lazy eyes', as there was no obvious cause.
Two MRIs (private then NHS) after I ended up in A&E thinking I'd had a stroke (slurred and laboured speech, blurred vision).
I actually refused to have a lumbar puncture as everything pointed to MS and my consultant said that even if the LP was negative, it wouldn't affect the diagnosis as they can sometimes be wrong. A lumbar puncture is not actually required for the diagnosis if the MRI and clinical history points to MS.
Hope this helps
Efb hiya homie. Dr kenton.
If you do get a diagnosis of MS and meet the criteria for treatment
with DMDs you will probably be passed to Dr Shehu [my consultant. He is
an excellent Neuro and a really good guy.Dr Kenton also has a very good reputation with patients and staff.
There are three dedicated MS Nurses who will reply to messages left on the answephone within 24 hours. There is also a day unit for patients on Tysabri and those getting steroids - staff there are great [pat and Di].
Liz
I have had a number of MRIs since Dr Shehu took over from my previous Consultant [retired] but there was never any doubt about the diagnosis.
Liz
13 Aug 2013 at 11:38AM
Nazra you seem to have ignored people's questions and have
skirted round them. Both myself and Tina have asked question and you
have ignored them
13 Aug 2013 at 3:05PM
If you had titled the thread "unsure of diagnosis" or "should
I get a second opinion", I think you would have had a far better
response than saying that MS is fictitious.
So what can we deduce from your ramblings.
Both of which are common in a few illnesses.
So you need to request blood tests, although I am surprised the neurologist hasn’t already as that was the first thing they did with me. These will rule out some of the illnesses which present with the above results.
It appears you are convincing yourself you have Lymes Disease and a simple blood test would rule this out.
So my suggestion is to ring your neuros secretary and get an appointment, it is all too easy to forget to email someone back but if you have an appointment then the questions will be answered there and then.
I would also not call the MS Society Research line and accuse them of spending the funds on tea and coffee, a sure fire way to get put to the bottom of the pile.
I have to say your posts tend to be confrontational and that is not a way to get good advice, if you have the same manner on the phone I’m sure most people would begin to stutter and not know what to respond with.
So put your energy into something that provides a definitive answer, asking for more tests and if it is MS an explanation as to why they have come to this conclusion.
With regard to pain, you will need to ask your neuro for a prescription. Many of us on here are taking Amitriptyline, Gabapentin or Pregablin, if you don’t want to take drugs then try a complementary therapy. It’s your choice.
So what can we deduce from your ramblings.
- Positive LP result
- White spots on MRI
Both of which are common in a few illnesses.
So you need to request blood tests, although I am surprised the neurologist hasn’t already as that was the first thing they did with me. These will rule out some of the illnesses which present with the above results.
It appears you are convincing yourself you have Lymes Disease and a simple blood test would rule this out.
So my suggestion is to ring your neuros secretary and get an appointment, it is all too easy to forget to email someone back but if you have an appointment then the questions will be answered there and then.
I would also not call the MS Society Research line and accuse them of spending the funds on tea and coffee, a sure fire way to get put to the bottom of the pile.
I have to say your posts tend to be confrontational and that is not a way to get good advice, if you have the same manner on the phone I’m sure most people would begin to stutter and not know what to respond with.
So put your energy into something that provides a definitive answer, asking for more tests and if it is MS an explanation as to why they have come to this conclusion.
With regard to pain, you will need to ask your neuro for a prescription. Many of us on here are taking Amitriptyline, Gabapentin or Pregablin, if you don’t want to take drugs then try a complementary therapy. It’s your choice.
13 Aug 2013 at 3:28PM
Nazra
you seem to have ignored people's questions and have skirted round
them. Both myself and Tina have asked question and you have ignored them
Have u havent i already answered. Let me see i havent skirted around
anything this thread is huge lots of ppl have askee questions. Who the
hell is tina?
13 Aug 2013 at 3:31PM
What symptoms did you present with and how long ago?
Ive already answered this. A yr ago i had tb two months after
treatment right handed pain numbness neck spasm shoukder pain headachew
fatigue. I swear i have already been through this...yawn.
13 Aug 2013 at 3:49PM
If you want help then people are here but if you want to have
a negative attitude to people who are trying to help then that is not
the way to go! I think if you are convinced that you have lymes disease
then there is nothing anyone can say to convince you otherwise. I wish
you luck on your tests
13 Aug 2013 at 3:53PM
I agree with Rufus. Put your energy into productive issues.
You probably do not realise you are presenting as a very angry
confrontational human being. I am sure you do not mean to be
deliberately rude but your tone can to some people present as
offensive. Asking for rather than demanding answers is far more likely
to get you what you are seeking. If your e-mails to the medics were in
the same tone as your postings I would certainly put your email to the
bottom of the pile. I understand it can be scary and lonely but the
people on this forum are trying to help with their suggestions. You
are asking that we open our minds to your suggestions but you are not
allowing others the same courtesy. Please think about it. Posting "who
the hell is Tina" is not helpful. I wish you well in your quest for
answers.
Nazra
you seem to have ignored people's questions and have skirted round
them. Both myself and Tina have asked question and you have ignored them
Have u havent i already answered. Let me see i havent skirted around
anything this thread is huge lots of ppl have askee questions. Who the
hell is tina?Bit rude there mate - Tina was the first person to have the courtesy to reply to you. If you read your replies, you'd know that.
13 Aug 2013 at 4:16PM
Anita you mean ive answered her qs i answer as a whole. Sorry im not very wishy washy...
13 Aug 2013 at 4:20PM
Nazra
you seem to have ignored people's questions and have skirted round
them. Both myself and Tina have asked question and you have ignored them
Have u havent i already answered. Let me see i havent skirted around
anything this thread is huge lots of ppl have askee questions. Who the
hell is tina?Bit rude there mate - Tina was the first person to have the courtesy to reply to you. If you read your replies, you'd know that.
13 Aug 2013 at 4:43PM
OK, no problem - no offence taken. It can be confusing when
we have screen names, but sometimes sign with our real names too. I
usually do put my real name in posts, but I answer to either.
Tina
Tina
13 Aug 2013 at 4:47PM
can i ask what you do for a living and also i get really
offended people slagging off the nhs , we are extremely lucky in this
country to get the excellent care and treatment provided by the nhs and
all the hard working people who work in it, me included. with all my
health problems i soldier on helping people like you.
13 Aug 2013 at 4:57PM
You may still be failing to see the bigger picture. They may
have replied but you will have upset them just the way you have
everyone else and they will not be going out of their way to help you
rather the opposite I think. Please consider your attitude in the long
run it will not help you. Such a shame that you feel you have to behave
in this way. Hope that in time you will mature and be able to see others
are just as entitled to their opinions as you are and by belittling
them you are doing yourself and them a great disservice. A little
kindness and respect goes a long way. I do hope you find your holy
grail and some peace along the way.
13 Aug 2013 at 5:14PM
You may still be failing to see the bigger picture. They may have
replied but you will have upset them just the way you have everyone else
and they will not be going out of their way to help you rather the
opposite I think. Please consider your attitude in the long run it will
not help you. Such a shame that you feel you have to behave in this way.
Hope that in time you will mature and be able to see others are just as
entitled to their opinions as you are and by belittling them you are
doing yourself and them a great disservice. A little kindness and
respect goes a long way. I do hope you find your holy grail and some
peace along the way.
Here here
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