Aa
How long have you been in limboland without a satisfactory, conclusive dx?
Simple question here...
I wondered how long Forum Members and our visitors (feel free to sign up and post!) have endured this exhausting and confusing limboland without any proper diagnosis and treatment?
You could count from the time your signs and symptoms first appeared or from the first time you consulted a doctor about them.
If you've been diagnosed, please also participate and vote for the relevant period you were without a diagnosis and treatment.
It would be good to get as many responses as possible to see the scale of the problem - can we keep this thread bumped for a while please?
Thanks!!
hugs
sammxx
I wondered how long Forum Members and our visitors (feel free to sign up and post!) have endured this exhausting and confusing limboland without any proper diagnosis and treatment?
You could count from the time your signs and symptoms first appeared or from the first time you consulted a doctor about them.
If you've been diagnosed, please also participate and vote for the relevant period you were without a diagnosis and treatment.
It would be good to get as many responses as possible to see the scale of the problem - can we keep this thread bumped for a while please?
Thanks!!
hugs
sammxx
I am very sad and annoyed that I'm now looking at the 6th anniversary in a couple of months of the sudden stroke-like event I had :-(
samxx
samxx
I am at about 16 months....
Hi Sam
I'm sorry you are sad..hang in there...
I will be 1 year in June
Jibby
I'm sorry you are sad..hang in there...
I will be 1 year in June
Jibby
17 months on thursday for me.
A little over 5 years for me and frustrated as all heck.
Just over 3 years for me and counting...
Hope we all get answers soon its the not knowing that makes life hard, I just want to know what it is I'm dealing with.
Hugs to you all in limboland
Suz
Hope we all get answers soon its the not knowing that makes life hard, I just want to know what it is I'm dealing with.
Hugs to you all in limboland
Suz
eight and a half years for me.
hugs to all in this position.
hugs to all in this position.
It was 14 months for me.
I coulda swore I already posted here??? The mysteries of the internet.........
Mike
I coulda swore I already posted here??? The mysteries of the internet.........
Mike
Just about 4 years now,started immediately with panic attack like symptoms, dysautonomia (rapid heart beat,unexplained nervousness,nausea,thinking problems,feeling hypoglycemic without being it),.,lightheadedness,intercurrent stutterers,muscle twitches and weakness,lower back bone neuro pains...
But I also had concentration problems and some psychiatric issues which feel like being poisened by drugs since my childhood,the neuro things and the hives came into my life a bit later...
Luckily they are not chronic but I also want to get rid of them or at least a DX and maybe proper treatment.
yours sweetwoman :)
But I also had concentration problems and some psychiatric issues which feel like being poisened by drugs since my childhood,the neuro things and the hives came into my life a bit later...
Luckily they are not chronic but I also want to get rid of them or at least a DX and maybe proper treatment.
yours sweetwoman :)
I voted up to a year since that is how long it was from first pursuing the matter to first going to see a so-called Lyme literate doctor.
However, given that the vast majority of MD's prescribe to the thinking that Lyme is "difficult to get and easy to treat," I in a way feel that I'll never have a clear-cut case and am still in a form of limbo. Afterall, popular medical opinion disputes that my condition of chronic Lyme disease even exists, so I can't take much comfort in the label. And since my diagnosis and treatment are controversial, I need to pay out-of-pocket for my care.
It is upsetting that my "diagnosis" is moreso a "choice" that I made. Had I not quite intentionally gone off of the beaten path, I would not have gotten diagnosed with Lyme disease. In fact, the 4 neuros, 1 rheumy, and my GP all strongly opposed the possibility of Lyme. But at the end of the day, I'm slowly getting better and regaining my life, so confusing or not I'll stick to it.
Just thought I'd weigh in from my point of view on a less than clear or obvious path out of Limbo.
However, given that the vast majority of MD's prescribe to the thinking that Lyme is "difficult to get and easy to treat," I in a way feel that I'll never have a clear-cut case and am still in a form of limbo. Afterall, popular medical opinion disputes that my condition of chronic Lyme disease even exists, so I can't take much comfort in the label. And since my diagnosis and treatment are controversial, I need to pay out-of-pocket for my care.
It is upsetting that my "diagnosis" is moreso a "choice" that I made. Had I not quite intentionally gone off of the beaten path, I would not have gotten diagnosed with Lyme disease. In fact, the 4 neuros, 1 rheumy, and my GP all strongly opposed the possibility of Lyme. But at the end of the day, I'm slowly getting better and regaining my life, so confusing or not I'll stick to it.
Just thought I'd weigh in from my point of view on a less than clear or obvious path out of Limbo.
Thank you all for standing up and being counted! And for your kind comments too.
I'm just bumping this so that more people notice the poll and, I hope, put their own tick in the box...
hugs
sammxxx
I'm just bumping this so that more people notice the poll and, I hope, put their own tick in the box...
hugs
sammxxx
I have been fighting to get a diagnosis and even just to get help - since I had a fall when I was 8 years old - I am now 39 that makes an horrendous 31 years.
I was written off by so many Drs/Consultants etc (growing pains,muscle strains,laziness,etc,etc).
My family have basically deserted me except for 2 of them (out of 6).
I cant remember a time when I havent been in pain,& unable to remember the simplest things, speak properly.
It makes me feel awful. Sorry for the moan.
I was written off by so many Drs/Consultants etc (growing pains,muscle strains,laziness,etc,etc).
My family have basically deserted me except for 2 of them (out of 6).
I cant remember a time when I havent been in pain,& unable to remember the simplest things, speak properly.
It makes me feel awful. Sorry for the moan.
Hey Ice Dragon! Good to see you!
This is dreadful. I mean that you've been suffering for so very long. Goodness, you have every right to moan...
Especially when family go AWOL. It seems to happen a lot - if they're well and able, family and friends just do not understand. It's sooo sad.
Forgive me if you've posted this all before, but have you had MRIs etc?
hugs
sammxx
This is dreadful. I mean that you've been suffering for so very long. Goodness, you have every right to moan...
Especially when family go AWOL. It seems to happen a lot - if they're well and able, family and friends just do not understand. It's sooo sad.
Forgive me if you've posted this all before, but have you had MRIs etc?
hugs
sammxx
Hiya wonko
Sorry I missed yours earlier. I meant to say thank you for telling us about your route to the Lyme dx. I think it's really important for us Limbolanders to remember that there are several ways to skin a cat, so to speak! That sometimes you have to go and search out a different path to dx.
As you say, the fact that the medical establishment has made it a 'choice' for you to get a dx or not is, IMHO, ..... (unfit to publish!) But it's great that you got there in the end and that you're slowly pulling out of the Lyme pit ;-)
bestest wishes
sammxxx
Sorry I missed yours earlier. I meant to say thank you for telling us about your route to the Lyme dx. I think it's really important for us Limbolanders to remember that there are several ways to skin a cat, so to speak! That sometimes you have to go and search out a different path to dx.
As you say, the fact that the medical establishment has made it a 'choice' for you to get a dx or not is, IMHO, ..... (unfit to publish!) But it's great that you got there in the end and that you're slowly pulling out of the Lyme pit ;-)
bestest wishes
sammxxx
I have had a Mrt.
No results....
yours sweetwoman :0)
No results....
yours sweetwoman :0)
I'm coming up on my three year "anniversary" of my mystery illness in a couple weeks. :-(
I will be at 1 year in a month---that's 1 year since I began looking for answers as I ignored symptoms for years before that.
I think doctors and their interpretations of test results are interesting. For example:
After my MRI it was found that I have Chiari Malformation and lesions in the white matter. According to the neurologist that didn't bother giving me a 'follow-up appointment' "I am fine"
I also have b12 deficiency and that seems to be a big deal to them---I give myself shots. Yet I continue to worsen now using a walker.
Limboland is not only frustrating it is downright dangerous.
Since they have lists and/or recommendations for good doctors, it seems that we should have lists of doctors to stay away from. Not becuase they can't find a diagnosis but for those docs who are disimissive, rude, and accusatory.
Hang in there, lois
I think doctors and their interpretations of test results are interesting. For example:
After my MRI it was found that I have Chiari Malformation and lesions in the white matter. According to the neurologist that didn't bother giving me a 'follow-up appointment' "I am fine"
I also have b12 deficiency and that seems to be a big deal to them---I give myself shots. Yet I continue to worsen now using a walker.
Limboland is not only frustrating it is downright dangerous.
Since they have lists and/or recommendations for good doctors, it seems that we should have lists of doctors to stay away from. Not becuase they can't find a diagnosis but for those docs who are disimissive, rude, and accusatory.
Hang in there, lois
Been almost 10 years since my first trying to find answers about the overbearing fatigue. Had a GP dx MS last summer, but we all know how far that gets me.....NOWHERE!!!!
Haven't been seeking a dx as don't have health ins. Maybe before too much longer though.
Wishing you all good luck on finding your answers!!!!
doni
Haven't been seeking a dx as don't have health ins. Maybe before too much longer though.
Wishing you all good luck on finding your answers!!!!
doni
Hey! Thanks so much to all those who've 'voted' so far.
This is beginning to look like chronic suffering on a big scale. 50% of us have been seeking a dx for up to 2yrs and the other 50% have been struggling for the same for anything from 2 years to infinity.
I'm hoping that many more people will press the button for their sx duration so that we can get as big a picture as possible of what's actually going on.
(I feel another investigation coming on...we need a health page on this topic!)
hugs
sammxx
This is beginning to look like chronic suffering on a big scale. 50% of us have been seeking a dx for up to 2yrs and the other 50% have been struggling for the same for anything from 2 years to infinity.
I'm hoping that many more people will press the button for their sx duration so that we can get as big a picture as possible of what's actually going on.
(I feel another investigation coming on...we need a health page on this topic!)
hugs
sammxx
Symtoms started 9 to 10 years ago, HOWEVER for the past 11 mths. the pain is cronic pain is here more then welcomed and the daily pain has been of corse daily since AUG. of last year,the onset of all the pain im in now..xx... mommies4
Just wanted to say thanks for 'voting' and to ask new members to add their 'x'.
Have you noticed, we're only 10 short of ***200*** members now? Phenomenal! I'm not happy we all have to be here, but so glad that we have this little space...thanks as well to all you contribute and make Neuro-Limboland such a supportive, friendly corner.
sammxxx
Have you noticed, we're only 10 short of ***200*** members now? Phenomenal! I'm not happy we all have to be here, but so glad that we have this little space...thanks as well to all you contribute and make Neuro-Limboland such a supportive, friendly corner.
sammxxx
Two and a half years since I stopped ignoring symptoms and started asking questions. Only 3 months since the seizures, or what ever these things are started in earnest.
Hi
been in limbo land for 8 yrs only started deterioration in the last 5 years.. Going downhill in the last 2yrs
been in limbo land for 8 yrs only started deterioration in the last 5 years.. Going downhill in the last 2yrs
Hi faithHGL and bigbird - thanks for adding your 'x's.
Between us we've racked up a lot of years being in pain and discomfort.
I just want to encourage new members to 'vote' also...
samxx
Between us we've racked up a lot of years being in pain and discomfort.
I just want to encourage new members to 'vote' also...
samxx
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