Aa
Misunderstood and Misdiagnosed?
MS post:
Please accept my sincerest apologies for posting this here. I'm urging everyone to read this, and share it with whoever you know that may be affected by it (or, even if they're not, these words need to be heard and understood). So please, read on:
I won't go into much detail about my own past, as this affects everybody. However, to cut a long story short my diagnosis of Multiple Sclerosis might actually be Lyme Disease. I've made a lot of excellent friends in MS groups and have spoken to a lot of good people. The idea of having Multiple Sclerosis is a scary concept, but there are people all over the world who offer support and advice.
Lyme Disease, as you may or may not know, is a tick-bourne infection that is present in a lot of countries including the UK, USA and others. Awareness of it is still quite limited but it's affecting a lot of people everywhere. I guess the biggest point I'm trying to make here is just exactly what Lyme disease can mimic. The problem that is going on a lot right now is properly diagnosing Lyme Disease (also known as the Great Imitator) is difficult as the tests in place are not 100% successful and can result in false positives and negatives. This can, in turn, result in a diagnosis of a mimic such as Lupus, MS, ALS, RA, and others and possibly incorrect treatment. I've seen a LOT of stories where the original diagnosis of Lupus, after further testing, was actually Lyme which is a perfectly curable disease if caught early. I know the US has a higher success rate of diagnosing Lyme, but there is still a lot of improvement to be made, and governments are still in a lot of disagreement about the right course of treatment for this.
To those who are affected by Multiple Sclerosis, Lupus, Chronic Fatigue Syndrome, Fibromyalgia, Alzheimers, Parkinsons, Guillian-Barré syndrome, Ménière’s syndrome, , Arthritis (rheumatoid, reactive, infectious, juvenile, or osteoarthritis), Amyotrophic Lateral Sclerosis (Lou Gehrigs Disease) - I'm begging you to look this up and investigate. A full list of symptoms can be found online.
The typical bull's eye rash is only seen in 50% of people affected by Lymes - and may not show immediately after the bite (it can take 3-30 days for the rash to show after the bite, and averages around 7 days). You may not even notice a tick biting you due to the chemicals released at the time of biting. Awareness needs to be raised all over the world so that the true number of Lyme cases can be seen, heard and understood. Lyme is curable, but people are still suffering and dying because of poor diagnosis and delayed treatment all over the world. Children are being born with it and lives are being ruined unnecessarily - it breaks my heart when I see a young face that is living with a life of Lyme Disease that the mother or father didn't even know they could possibly pass on. Please do a good thing today - read and share this status. There is so much information available on the internet about this including the main Lyme Disease Wikipedia article. Thank you for reading one desperate person's attempt to improve things for the future xx
P.S I am not in any way taking away the importance of MS and curing MS - I am merely one person trying to make a difference . Steroids and DmDs can also do a lot of damage if there is Lyme present - another reason I'm posting this. If anyone is part of a group belonging to the above-mentioned disorders and illnesses, please share this status there too. This disease isn't getting enough action taken here - children are being born with it. it's tearing families apart and people are dying unnecessarily. I'm only one person, but there are so many that are living and dying with this.
Please accept my sincerest apologies for posting this here. I'm urging everyone to read this, and share it with whoever you know that may be affected by it (or, even if they're not, these words need to be heard and understood). So please, read on:
I won't go into much detail about my own past, as this affects everybody. However, to cut a long story short my diagnosis of Multiple Sclerosis might actually be Lyme Disease. I've made a lot of excellent friends in MS groups and have spoken to a lot of good people. The idea of having Multiple Sclerosis is a scary concept, but there are people all over the world who offer support and advice.
Lyme Disease, as you may or may not know, is a tick-bourne infection that is present in a lot of countries including the UK, USA and others. Awareness of it is still quite limited but it's affecting a lot of people everywhere. I guess the biggest point I'm trying to make here is just exactly what Lyme disease can mimic. The problem that is going on a lot right now is properly diagnosing Lyme Disease (also known as the Great Imitator) is difficult as the tests in place are not 100% successful and can result in false positives and negatives. This can, in turn, result in a diagnosis of a mimic such as Lupus, MS, ALS, RA, and others and possibly incorrect treatment. I've seen a LOT of stories where the original diagnosis of Lupus, after further testing, was actually Lyme which is a perfectly curable disease if caught early. I know the US has a higher success rate of diagnosing Lyme, but there is still a lot of improvement to be made, and governments are still in a lot of disagreement about the right course of treatment for this.
To those who are affected by Multiple Sclerosis, Lupus, Chronic Fatigue Syndrome, Fibromyalgia, Alzheimers, Parkinsons, Guillian-Barré syndrome, Ménière’s syndrome, , Arthritis (rheumatoid, reactive, infectious, juvenile, or osteoarthritis), Amyotrophic Lateral Sclerosis (Lou Gehrigs Disease) - I'm begging you to look this up and investigate. A full list of symptoms can be found online.
The typical bull's eye rash is only seen in 50% of people affected by Lymes - and may not show immediately after the bite (it can take 3-30 days for the rash to show after the bite, and averages around 7 days). You may not even notice a tick biting you due to the chemicals released at the time of biting. Awareness needs to be raised all over the world so that the true number of Lyme cases can be seen, heard and understood. Lyme is curable, but people are still suffering and dying because of poor diagnosis and delayed treatment all over the world. Children are being born with it and lives are being ruined unnecessarily - it breaks my heart when I see a young face that is living with a life of Lyme Disease that the mother or father didn't even know they could possibly pass on. Please do a good thing today - read and share this status. There is so much information available on the internet about this including the main Lyme Disease Wikipedia article. Thank you for reading one desperate person's attempt to improve things for the future xx
P.S I am not in any way taking away the importance of MS and curing MS - I am merely one person trying to make a difference . Steroids and DmDs can also do a lot of damage if there is Lyme present - another reason I'm posting this. If anyone is part of a group belonging to the above-mentioned disorders and illnesses, please share this status there too. This disease isn't getting enough action taken here - children are being born with it. it's tearing families apart and people are dying unnecessarily. I'm only one person, but there are so many that are living and dying with this.
This message is copy-and-pasted on patients.co.uk, and 3 Facebook pages of MS patient groups and the MSAA. I'm not sure what you hope as a response as a brand new site member as we truly love to support and engage in discussion, but one-size-fits-all posts are a little impersonal and we can't address your own concerns.
You wrote on your liveJournal profile (An assumption admittedly, but the same user name) about your very extreme anxiety surrounding MS-like symptoms in October. You state there "If this is MS, then I will try and talk to as many MS sufferers as I can so I can get a grip on this and put my mind at ease further".
We would all love to do that, whether or not you're in diagnostic limboland (many here are), diagnosed with a different neurological condition, or indeed have MS. But it's very difficult to engage with a screed that tells us nothing about you.
Most of us will have been tested for Lyme and other MS mimics.
You wrote on your liveJournal profile (An assumption admittedly, but the same user name) about your very extreme anxiety surrounding MS-like symptoms in October. You state there "If this is MS, then I will try and talk to as many MS sufferers as I can so I can get a grip on this and put my mind at ease further".
We would all love to do that, whether or not you're in diagnostic limboland (many here are), diagnosed with a different neurological condition, or indeed have MS. But it's very difficult to engage with a screed that tells us nothing about you.
Most of us will have been tested for Lyme and other MS mimics.
Most all of us are checked for Lyme by good neurologists before diagnosing us but please remember that the Wiki site is made up of other people's comments and not everything is checked for accuracy. It is the last place to look for good advice on MS.
Perhaps a visit to the National Multiple Sclerosis site would offer more correct information.
I hope you find what you are looking for and thanks for stopping by to visit with us
Perhaps a visit to the National Multiple Sclerosis site would offer more correct information.
I hope you find what you are looking for and thanks for stopping by to visit with us
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