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
Thinking this could take 7 + years makes me want to scream.
--faithHGL
--faithHGL
thanks for your insightful comment, faithHGL.
i wonder if anyone has a statistic for how long it can take for proper dx of MS or any other chronic neuro disorder.
i remember breaking down in tears a year ago in my rheumy's office when she told me that she sees patients sometimes for 7 or more years before the fog burns off and their true dx becomes clear. i just don't know how this can be possible, but it seems so darned pervasive.
xoxx
binx
i wonder if anyone has a statistic for how long it can take for proper dx of MS or any other chronic neuro disorder.
i remember breaking down in tears a year ago in my rheumy's office when she told me that she sees patients sometimes for 7 or more years before the fog burns off and their true dx becomes clear. i just don't know how this can be possible, but it seems so darned pervasive.
xoxx
binx
hi hedgey,
thank you, again, for the summary of your incredibly journey. after everything you have been through, i am so happy you finally got a new GP who isn't sitting on his/her duff.
and nope--you're not a numbskull. the poll is closed now that i'm trying to look at it. i will make another one and copy silkcut's text so new folks can contribute.
xxox
binx
thank you, again, for the summary of your incredibly journey. after everything you have been through, i am so happy you finally got a new GP who isn't sitting on his/her duff.
and nope--you're not a numbskull. the poll is closed now that i'm trying to look at it. i will make another one and copy silkcut's text so new folks can contribute.
xxox
binx
1981 when symptoms first seen. GP eventually agreed to send me for testing after a physiotherapist asked if I'd been tested for MS, and then six to eight months later an Occupational Therapist asked me the same question.
Tests followed, at which point a neurologist told me I was suffering with stress. (hmpfff!)
Sent to a Rheumatologist who did various tests, and upon seeing results he dictated a letter to my doctor while I sat there, saying "this woman does NOT have a ritis. She does however have a degenerative disease." .
He told me to wait two weeks then go to see my GP who would organise for me to see someone.
Saw GP two weeks later, asked him what this 'degenerative disease' was. He said he didn't know what I was talking about. I told him about the specialist and the letter. He dug through my notes, found the letter, read it... then folded it up, put it under his blotter and said ... "oh that's just what they call arthritis nowadays".
I learnt to not bother to ask my doctor about my medical problems anymore.
He eventually retired, and two years ago I got a new GP. Things started to change from that point on.
30 years from first symptoms to now. I'm now waiting to see Neurologist. Had MRI of head and X-ray of spine while I'm waiting. (My GP organised those to cut down on the messing around once I'd received an appointment to see neuro.).
Could someone tell me how to vote on the pie at the top of this page? I can't figure out where to click or place my X.
Of course ... I could just be being a complete numbskull! LOL. xxx
Tests followed, at which point a neurologist told me I was suffering with stress. (hmpfff!)
Sent to a Rheumatologist who did various tests, and upon seeing results he dictated a letter to my doctor while I sat there, saying "this woman does NOT have a ritis. She does however have a degenerative disease." .
He told me to wait two weeks then go to see my GP who would organise for me to see someone.
Saw GP two weeks later, asked him what this 'degenerative disease' was. He said he didn't know what I was talking about. I told him about the specialist and the letter. He dug through my notes, found the letter, read it... then folded it up, put it under his blotter and said ... "oh that's just what they call arthritis nowadays".
I learnt to not bother to ask my doctor about my medical problems anymore.
He eventually retired, and two years ago I got a new GP. Things started to change from that point on.
30 years from first symptoms to now. I'm now waiting to see Neurologist. Had MRI of head and X-ray of spine while I'm waiting. (My GP organised those to cut down on the messing around once I'd received an appointment to see neuro.).
Could someone tell me how to vote on the pie at the top of this page? I can't figure out where to click or place my X.
Of course ... I could just be being a complete numbskull! LOL. xxx
Glad you gave this the bump. It is sometimes really frustrating to think its been so long, but it may be just average for neuro issues. I wonder what the national average looks like for some of the well-known neuro prob's. For example, how long, on average, does it take to get a diagnosis for people with MS...?
--faithHGL
--faithHGL
i wanted to bump this poll that silkcut posted in 2010 and we have had many new members join us since then!
best wishes,
binx
best wishes,
binx
i've been around since 11 march 2009 when i had my first attack. i'm sorry to hear that some have been around for so long, i'm already going mad here and my time here is nothing compared to some so i can't imagine what they are going through. stay strong everyone and i hope we all get dx soon
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
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
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.
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
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
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
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
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
I'm coming up on my three year "anniversary" of my mystery illness in a couple weeks. :-(
I have had a Mrt.
No results....
yours sweetwoman :0)
No results....
yours sweetwoman :0)
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
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
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.
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 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.
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 :)
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
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