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Conflicting information on different websites
Hello Limboland, I came over here from http://www.mssociety.org.uk forum. Helpful people over there but I found the structure of the forums really difficult to follow and it is a little confusing.
I made my I.D. the same, so rather than repeating myself, aq little basic history is here but I am not going to ask the same questions.
http://www.mssociety.org.uk/applications/discussion/view.rm?post_id=968245&id=14320#post968253
My frustration at the moment is conflicting information on different websites pertaining to how and when symptoms and signs may arise. As an example, recently I had a couple of bouts of left sided facial pain. It goes from front of teeth along both gums/teeth all the way to left, jaw and ear and occasionally shooting to eye. Both times it lasted on and off for about a week then went as quickly as it came.
I did a bit of digging and found that it is a possible symptom of Trigeminal Neuralgia. The problem I am facing is that one site would say that Trigeminal Neuralgia very often is the first sign of MS and another site says it is rarely a first sign and more often tends to occur at late stages.
Now with the confliction and I am sure there are many others, how are people supposed to stay informed with whatever condition they may have? And in my case, how are people supposed to get the correct information so they can rule in/out things from their history? I am finding it a struggle.
I made my I.D. the same, so rather than repeating myself, aq little basic history is here but I am not going to ask the same questions.
http://www.mssociety.org.uk/applications/discussion/view.rm?post_id=968245&id=14320#post968253
My frustration at the moment is conflicting information on different websites pertaining to how and when symptoms and signs may arise. As an example, recently I had a couple of bouts of left sided facial pain. It goes from front of teeth along both gums/teeth all the way to left, jaw and ear and occasionally shooting to eye. Both times it lasted on and off for about a week then went as quickly as it came.
I did a bit of digging and found that it is a possible symptom of Trigeminal Neuralgia. The problem I am facing is that one site would say that Trigeminal Neuralgia very often is the first sign of MS and another site says it is rarely a first sign and more often tends to occur at late stages.
Now with the confliction and I am sure there are many others, how are people supposed to stay informed with whatever condition they may have? And in my case, how are people supposed to get the correct information so they can rule in/out things from their history? I am finding it a struggle.
Hi from me too
From just about everything Limbolanders post here, it seems that no condition or disease follows textbook definitions. So we run around in circles and are sometimes even led up garden paths by those who should know better!
This is partly because we humans are so diverse and partly because, I believe, the state of neurological science really is not all that developed: if it's not 'textbook' to many neuros then they sort of hedge and duck straight questions.
Not at all useful for us! And it's very hard not to get anxious - maybe most of us in Limboland have become quite fraught at some stage or another. But, as binx so rightly says, there are many very useful and supportive posts here and also on the MS Community board: they have a wealth of expertise over there (in fact, I wouldn't be surprised if they have a lot of interested neurologists secretly consulting all their posts!!).
Also, there's another point perhaps to factor in when you're reading 'medical info' sites. Each site has its own agenda and its particular funders. If they're funded say by a drug corp then there is a tendency to bias about describing sx that are alleviated by the drug corp's products. I guess that's only to be expected. All the same, there are politics involved - even 'neutral' patient-support sites have their own policies and pressures and 'party-lines', which may require them to overlook a few elements that we as patients may be wanting to find out about.
In sum, this is why I set quite a bit more store - using reasonable discernment, of course - by patient-generated sites like MedHelp. Indeed, there are so many really intelligent, informative posters here who are also very kind to fellow sufferers!
Keep asking the questions though! We'll all benefit from the answers you get...;-)
bestest
sammxx
From just about everything Limbolanders post here, it seems that no condition or disease follows textbook definitions. So we run around in circles and are sometimes even led up garden paths by those who should know better!
This is partly because we humans are so diverse and partly because, I believe, the state of neurological science really is not all that developed: if it's not 'textbook' to many neuros then they sort of hedge and duck straight questions.
Not at all useful for us! And it's very hard not to get anxious - maybe most of us in Limboland have become quite fraught at some stage or another. But, as binx so rightly says, there are many very useful and supportive posts here and also on the MS Community board: they have a wealth of expertise over there (in fact, I wouldn't be surprised if they have a lot of interested neurologists secretly consulting all their posts!!).
Also, there's another point perhaps to factor in when you're reading 'medical info' sites. Each site has its own agenda and its particular funders. If they're funded say by a drug corp then there is a tendency to bias about describing sx that are alleviated by the drug corp's products. I guess that's only to be expected. All the same, there are politics involved - even 'neutral' patient-support sites have their own policies and pressures and 'party-lines', which may require them to overlook a few elements that we as patients may be wanting to find out about.
In sum, this is why I set quite a bit more store - using reasonable discernment, of course - by patient-generated sites like MedHelp. Indeed, there are so many really intelligent, informative posters here who are also very kind to fellow sufferers!
Keep asking the questions though! We'll all benefit from the answers you get...;-)
bestest
sammxx
hello and welcome to our discussion forum. it's always with mixed feelings that we welcome new members, but i hope your time here is productive for you.
i wanted to reiterate what helen41 said about the wealth of information available in the health pages on the MS forum. those links are well researched and accurate and one of the moderators is an MD who is also an MS sufferer. she provides a lot of support when her own health permits.
best wishes,
binx
i wanted to reiterate what helen41 said about the wealth of information available in the health pages on the MS forum. those links are well researched and accurate and one of the moderators is an MD who is also an MS sufferer. she provides a lot of support when her own health permits.
best wishes,
binx
oops my above post about creams was meant for the other thread, sorry. :-)
Oh and P.S. Unless you are pain sensitive to touch, I would always recommend the rub in creams rather than the spray, because you really don't want to be breathing in the spray.
Hi Helen, thanks for the reply. Yes it is very hard to resist asking questions but because my symptoms seem to cross over between fibromyalgia and MS its very easy to get mixed up, put two and two together and get five when five is not the answer.
So really what I mean is I don't want to lead myself down a path of thinking I have a certain something because that can lead to stress and already I am feeling a little mentally exhausted. I may find after all this that the possible demyelination is caused by smoking minor like smoking and the rest of my problems are something else. So for the moment I don't want to ask too much and get myself worked up.
So really what I mean is I don't want to lead myself down a path of thinking I have a certain something because that can lead to stress and already I am feeling a little mentally exhausted. I may find after all this that the possible demyelination is caused by smoking minor like smoking and the rest of my problems are something else. So for the moment I don't want to ask too much and get myself worked up.
I read your other post. What I have learned in this whole trip thru Limboland is that there are few people who follow a "typical" course. Symptoms for some occur like an avalanche, and for others it's a slow, puzzling process, with a lot of "let's wait and see if this develops".
My understanding of MS lesions are that they tend to be in particular parts of the brain, and symptoms occur as a result. Some may never experience jaw problems, while others may really suffer. It depends on where the lesions are. Some people have one lesion, some have many. Some people get a diag based on history alone.
On your post you wrote you were resisting joining a forum. There actually is a lot of info here and it's a good place to ask your questions. I would suggest as well that you check out the MS forum on this site. On the top right is a section called health pages which is full of really good info.
Hope this helps
My understanding of MS lesions are that they tend to be in particular parts of the brain, and symptoms occur as a result. Some may never experience jaw problems, while others may really suffer. It depends on where the lesions are. Some people have one lesion, some have many. Some people get a diag based on history alone.
On your post you wrote you were resisting joining a forum. There actually is a lot of info here and it's a good place to ask your questions. I would suggest as well that you check out the MS forum on this site. On the top right is a section called health pages which is full of really good info.
Hope this helps
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