[quote=“Karina1980”] 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. [/quote] 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.
What symptoms did you present with and how long ago?
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
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
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
Its not nonesense go research it. Lol.
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!
[quote=“Emma-C”] 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! [/quote] 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.
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 .
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.
[quote=“julie f”]
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 .
[/quote] 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.
I am also in Coventry. IMO the neuro team responsible for patients with MS are excellent. Who is your consultant?
Liz
have you been tested for BRAIN TB?
brain TB affects the brain and spinal cord
[quote=“julie f”]
have you been tested for BRAIN TB?
[/quote] 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.
[quote=“julie f”]
have you been tested for BRAIN TB?
[/quote] I had a lumbure puncture but afb didnt grow anything in the lab.
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
[quote=“efb”]
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
[/quote] 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 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