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Happy New Year!
Hey, Long Lost Peeps!
Had to get my MedHelp fix....been missing you all muchly! I wanted to wish you all a great New Year and hope that all of you enjoyed the holidays as much as I did. We had a very nice family time.
I also wanted to say something about this Limbo thing again. I know I keep dwelling on it (and in it!), but it does tend to hover over me each day in some way, as I suspect it does for others, too.
Limbo *****. No getting around that. It stinks in a huge, stinky way. Experiencing symptoms each day with no answer as to why they occur and wondering what damage is being done to one's body is at times torturous. Personally, I feel my limbs getting weaker and vertigo grabbing hold and not letting up, and I tend to worry that I'll continue to get progressively worse with no impending hope of treatment to slow this down. The worry isn't consuming me, but it nags at me when my body reminds me that it's not able to behave as it should. When those last five steps on the staircase require me pulling myself up with the rail. When in the middle of the night, I get up in the dark and need to use the wall to steady myself due to dizziness. When I tell my son I'm just too tired to play. I know others have different reminders.
Many of you have been so supportive of me, being outraged that I don't have a diagnosis by now. It touches me, and means a lot to me. I have been to some pretty awful doctors. One that prescribed every medication under the sun to treat my many symptoms to no avail. I think he was confused and frustrated. The drugs made ME confused and frustrated. Another doc sent me to a psychiatrist after all my testing came back normal. He actually rolled his eyes as I related new symptoms to him. And this was after I was seen in the ER for severe weakness to the point of not being able to walk. I was scared, and he rolled his eyes. Awful. He was frustrated, too, maybe. I've been to some very good doctors, as well. They did all the tests they should have done, and then some. They seemed to really want to figure out what's been going on with my body. I assume that's one reason they do what they do. They've been frustrated, too.
The frustrating thing for me, now, is I can't really blame any of the docs for not diagnosing me. I don't have any diagnostic evidence of any disorder, really. None that matter. I have symptoms and signs galore, but no clinical evidence. I think even the worst neuro I've been to (so hard to choose!) could easily diagnose me if I had a few lesions on MRI, or the right LP results. But for now I have nothing. Most of the docs I've seen have emphatically said that there IS something quite wrong with my health, but they can't say just what it is.
I've had quite a history of symptoms. I've had many documented episodes of having such severe weakness that I could not walk for days. I have had tremors, fasciculations, double vision, vertigo, hearing loss, clonus, hyper reflexes, urinary urgency, paresthesias and severe cognitive difficulties. Most of the symptoms come and go, but the weakness persists, and now the mild vertigo will not let up. I have come to accept this new me. Others have it so much worse.
I bring up my symptom history to make the point, hopefully, that although I DO have many indicative symptoms of MS, I still cannot blame my docs for no diagnosis at this point. Some of you may have even fewer symptoms than I. Some may have more. With no clinical eveidence, we will just have to try our best to be patient patients, and give our docs a break until they evidence they need for diagnosis is there. I'm quite certain our docs want a diagnosis for us as well.
It is difficult to do this, knowing that if we do have MS, time is ticking away with no treatment. Sometimes life just goes that way. As my internist has said, the drugs for MS are very toxic. A doc cannot prescribe drugs like that without enough reason to do so. As frustrating as it is, I agree with him.
Another thing I'd like to delicately say, is that I think I may have done myself a disservice by doc-hopping so much. Hindsight is 20/20. We give a lot of neuros a hard time here with our Friday Roasts, and rightly so. Some are complete twits. And it feels good to commisserate with each other over our poor treatment. But I have been to some fine doctors, and perhaps if I'd stuck with one over all this time, he or she would have had a better picture of my decline over time. Just because a doc's frustrated doesn't mean they won't be able to put the puzzle together in the end. When I do get my evidence, I think ANYone will be able to diagnose me. Even the eye-roller. Too bad we roasted him, the twit! He'll never get the chance.....
I feel hope in this new year for us Limbo-Dwellers. If I could send you all a good dose of patience, I would. Wish I could. Wish I had more myself. It's hard. I just wanted to try to give those of you who are frustrated some perspective. If the evidence is there, it will show itself eventually. We've seen this over and again here on the forum. In the mean time, we'll all just have to try to take good care of ourselves and lift ourselves and each other up, above the frustration and gloom.
God's peace to you all.
Much love,
Zilla*
Had to get my MedHelp fix....been missing you all muchly! I wanted to wish you all a great New Year and hope that all of you enjoyed the holidays as much as I did. We had a very nice family time.
I also wanted to say something about this Limbo thing again. I know I keep dwelling on it (and in it!), but it does tend to hover over me each day in some way, as I suspect it does for others, too.
Limbo *****. No getting around that. It stinks in a huge, stinky way. Experiencing symptoms each day with no answer as to why they occur and wondering what damage is being done to one's body is at times torturous. Personally, I feel my limbs getting weaker and vertigo grabbing hold and not letting up, and I tend to worry that I'll continue to get progressively worse with no impending hope of treatment to slow this down. The worry isn't consuming me, but it nags at me when my body reminds me that it's not able to behave as it should. When those last five steps on the staircase require me pulling myself up with the rail. When in the middle of the night, I get up in the dark and need to use the wall to steady myself due to dizziness. When I tell my son I'm just too tired to play. I know others have different reminders.
Many of you have been so supportive of me, being outraged that I don't have a diagnosis by now. It touches me, and means a lot to me. I have been to some pretty awful doctors. One that prescribed every medication under the sun to treat my many symptoms to no avail. I think he was confused and frustrated. The drugs made ME confused and frustrated. Another doc sent me to a psychiatrist after all my testing came back normal. He actually rolled his eyes as I related new symptoms to him. And this was after I was seen in the ER for severe weakness to the point of not being able to walk. I was scared, and he rolled his eyes. Awful. He was frustrated, too, maybe. I've been to some very good doctors, as well. They did all the tests they should have done, and then some. They seemed to really want to figure out what's been going on with my body. I assume that's one reason they do what they do. They've been frustrated, too.
The frustrating thing for me, now, is I can't really blame any of the docs for not diagnosing me. I don't have any diagnostic evidence of any disorder, really. None that matter. I have symptoms and signs galore, but no clinical evidence. I think even the worst neuro I've been to (so hard to choose!) could easily diagnose me if I had a few lesions on MRI, or the right LP results. But for now I have nothing. Most of the docs I've seen have emphatically said that there IS something quite wrong with my health, but they can't say just what it is.
I've had quite a history of symptoms. I've had many documented episodes of having such severe weakness that I could not walk for days. I have had tremors, fasciculations, double vision, vertigo, hearing loss, clonus, hyper reflexes, urinary urgency, paresthesias and severe cognitive difficulties. Most of the symptoms come and go, but the weakness persists, and now the mild vertigo will not let up. I have come to accept this new me. Others have it so much worse.
I bring up my symptom history to make the point, hopefully, that although I DO have many indicative symptoms of MS, I still cannot blame my docs for no diagnosis at this point. Some of you may have even fewer symptoms than I. Some may have more. With no clinical eveidence, we will just have to try our best to be patient patients, and give our docs a break until they evidence they need for diagnosis is there. I'm quite certain our docs want a diagnosis for us as well.
It is difficult to do this, knowing that if we do have MS, time is ticking away with no treatment. Sometimes life just goes that way. As my internist has said, the drugs for MS are very toxic. A doc cannot prescribe drugs like that without enough reason to do so. As frustrating as it is, I agree with him.
Another thing I'd like to delicately say, is that I think I may have done myself a disservice by doc-hopping so much. Hindsight is 20/20. We give a lot of neuros a hard time here with our Friday Roasts, and rightly so. Some are complete twits. And it feels good to commisserate with each other over our poor treatment. But I have been to some fine doctors, and perhaps if I'd stuck with one over all this time, he or she would have had a better picture of my decline over time. Just because a doc's frustrated doesn't mean they won't be able to put the puzzle together in the end. When I do get my evidence, I think ANYone will be able to diagnose me. Even the eye-roller. Too bad we roasted him, the twit! He'll never get the chance.....
I feel hope in this new year for us Limbo-Dwellers. If I could send you all a good dose of patience, I would. Wish I could. Wish I had more myself. It's hard. I just wanted to try to give those of you who are frustrated some perspective. If the evidence is there, it will show itself eventually. We've seen this over and again here on the forum. In the mean time, we'll all just have to try to take good care of ourselves and lift ourselves and each other up, above the frustration and gloom.
God's peace to you all.
Much love,
Zilla*
Wow, that was really what you were not there for! I know that you have been coming to terms with your lack of diagnosis and really did not want to ruffle things now that you were feeling better. So, why does he bring this all up suddenly when things are okay in your life?
My theory is that his partner made a note in the chart or spoke to him or both. At some point - as you and I have discussed - someone had to try to put the whole thing together. Bouts of symptoms, bouts of changing symptoms, changing lesions on exam (hyperreflexia, Babinski, weakness) all are symptoms and findings suggestive of demyelination. ALL the multitudes of other things that have been looked for and been normal (rule out of mimics) and then back to the evolving symptoms. We don't often use this phrase, but MS is a "diagnosis of exclusion." Also, he is in "medical teaching mode" with a medical student there. Maybe his mind was working in a different manner, really trying to put the whole picture together. If not "this", then "what?"
I think he is realizing that unless you have an exotic, never-before-discovered disease, then what you are left with after the last year of agony and normal tests, is MS. I suspect his working diagnosis IS MS. But, he is in total bewilderment at the normal 3T MRI. I am beginning to accept that most neurologists will NOT make the diagnosis of MS without some MRI evidence. You just had the one batch (brain and spine) of 3T imaging last year didn't you? Didn't you decide not to repeat the MRI until something else changed?
In one way, I am gald that someone has put all the puzzle pieces together and come out with what we always suspected. The negative 3T MRI does leave us in the quandry. MS is still at the very top of the list.
New hyperreflexia in your right arm? Is that arm at all weak? Any things that you have been having trouble doing with it? That's a big change and another that points toward MS.
Now, isn't Dr. L the World's Most Attentive Neuro from last summer that decided you have CFS and sent you to his buddy, the rheumatologist?
Well, Kiddo, the world keeps turning. I think those of us who have lots of extra lesions should lend you and Doni a few to put all this to rest.
Jes' wonderin'. This vertigo got much worse after falling asleep in the sun. Were you very warm? Was this a worsening of a symptom due to heat intolerance? BTW - I think it was just grand that this "church conference" was held around the pool....
Quizzle sticks
My theory is that his partner made a note in the chart or spoke to him or both. At some point - as you and I have discussed - someone had to try to put the whole thing together. Bouts of symptoms, bouts of changing symptoms, changing lesions on exam (hyperreflexia, Babinski, weakness) all are symptoms and findings suggestive of demyelination. ALL the multitudes of other things that have been looked for and been normal (rule out of mimics) and then back to the evolving symptoms. We don't often use this phrase, but MS is a "diagnosis of exclusion." Also, he is in "medical teaching mode" with a medical student there. Maybe his mind was working in a different manner, really trying to put the whole picture together. If not "this", then "what?"
I think he is realizing that unless you have an exotic, never-before-discovered disease, then what you are left with after the last year of agony and normal tests, is MS. I suspect his working diagnosis IS MS. But, he is in total bewilderment at the normal 3T MRI. I am beginning to accept that most neurologists will NOT make the diagnosis of MS without some MRI evidence. You just had the one batch (brain and spine) of 3T imaging last year didn't you? Didn't you decide not to repeat the MRI until something else changed?
In one way, I am gald that someone has put all the puzzle pieces together and come out with what we always suspected. The negative 3T MRI does leave us in the quandry. MS is still at the very top of the list.
New hyperreflexia in your right arm? Is that arm at all weak? Any things that you have been having trouble doing with it? That's a big change and another that points toward MS.
Now, isn't Dr. L the World's Most Attentive Neuro from last summer that decided you have CFS and sent you to his buddy, the rheumatologist?
Well, Kiddo, the world keeps turning. I think those of us who have lots of extra lesions should lend you and Doni a few to put all this to rest.
Jes' wonderin'. This vertigo got much worse after falling asleep in the sun. Were you very warm? Was this a worsening of a symptom due to heat intolerance? BTW - I think it was just grand that this "church conference" was held around the pool....
Quizzle sticks
Zilla, that was a good read, both stories. I'm even having trouble processing the one you just posted--I mean, Really? After all of this time? I think it *is* progress. Just being listened to is progress. Maybe these upcoming tests will give you clinical signs. Whatever you need right now, I hope it happens for you.
Bio
Bio
Hey, gals! It's SO wonderful to hear from you all!
Ess, of course, my idol, ess, Christy, Shelly (glad you had your family together!), Moki, Heather (red haired Minx!), Kathy, T (my girl!), Sweet Doni, and my great pal, Quix: Thanks so much for responding and sending support! I really love you all!
Jesserose~ Thank you for respoinding as well ~~ I'm eager to get to know you!
I appreciate all your notes, and wanted to give you an update. I phoned Elaine today, and plan to phone Quix and T,as well. (ess~ I need your number).
I had a sort of routine visit at my neuro's office today. I needed refills on my migraine and restless leg medications, or I would have considered skipping, since I have been so strong lately. My legs are actually doing pretty well. My only significant complaints are fatigue and chronic but mild vertigo.
So, I went today, expectations low, and just sort of being a med junkie, looking for refills. Dr. L examined me after we exchange pleasantries, and introduced me to the student who was shadowing him. Dr. L really is a fine gentleman. He has always been really kind to me.
SO, he tells me that my exam is surprisingly good. He seemed SO incredibly pleased at how my body was so strong. He genuinely seemed surprised, even though he usually downplays my weakness when I've seen him each time. He asked if I thought I was having problems with weakness. (No, now be quiet and give me my prescriptions.) I told him that lately I did feel quite strong. He told his student that in the past, he has been most concerned with the weakness in my legs, the left in particular. (Really?)
He looked over the blood tests I had done since my last visit to rule out vascular causes. All normal. Great. He asked if I had any complaints. I told him that I was really only having troouble with fatigue and mild vertigo. He asked more about the vertigo. Was this new? (No, we've been down this road before. Remember me?)
So I told him that the vertigo was pretty mild, but it has been chronic. I've had it since I talked to him in November. Now I had his attention. I told him that while in Orlando last week for a church conference (that's my story and I'm sticking to it!) I laid out in the sun by the pool for two hours (fell asleep), and had trouble getting back to my room. I was SO dizzy and had to lie down for a few hours with my eyes closed.
I was also having trouble with focusing my eyes. He really was hanging on every word now. He came over and looked at my eyes with the little eye instrument, lights off. I'm sure my optic nerves were fine. I think the focus problems I have are from some kind of nystagmus. But he was listening.
He continued with a very short exam. I thin it went very well. He didn't check my balance, which is very off now, but I really was just there for meds with no hope of making any progress with him. My reflexes were brisk in my right arm (new -- have been having paresthieias in my right hand for a while now) and in both legs. He showed the student again.
He announced that he wanted to focus on the vertigo now that my weakness wasn't such a concern for him. He said that usually I have SO much going on, and now that things were looking so much better, he'd concentrate on the vertigo. (Who IS this man, and what horrid thing has he done to my sweet but daft neurologist?!)
He said he wanted to do an evoked potential test of my ears, and do the caloric testing as well. He asked how my hearing was. I reminded him that I have hearing aids and just made an appointment with my audiologist because I think the hearing in my right ear is getting worse. He buzzed the tuning fork behind and in front of each ear, hearing aids in. My right ear is MUCH worse.
He told me to keep the app't with my audiologist and asked if I culd come to have the vertigo testing done TOMORROW, which I thought seemed weird. I can't, but will go on Monday.
He asked me to be patient while he went through my whole chart. He joked that it would take a while, since it's so thick. I giggled politely, as I am wont to do.
He spoke quietly to the student, going over all the testing I've had, and how everything has come up normal. He ticked off so many, many tests, and told the student how each ruled out what. He then said.... (drumroll....).. So, this really just leaves MS, even though her MRIs have been normal. Brain, spine MRIs. Her last LP was pretty normal, too.
WHAT? Who IS this? Did he just say MS out loud? Does he KNOW he just said MS out loud?
I let it go. I don't know why, but I let it go. I don't think I'm ready to go there. And I don't think that's his diagnosis. I really think, though, that it's his "working diagnosis," as his partner sort of suggested when I saw him in Dr. L's stead last month. (Elaine thinks his partner may have suggested MS to him when they spoke about my right foot weakness.)
Hmmm. Weird. Don't quite know what to make of this. Is it progress? I am not sure. It feels so strange, I can't tell you.
Thanks for listening to another long rubbish-y story.
Peace to all,
Zilla*
Ess, of course, my idol, ess, Christy, Shelly (glad you had your family together!), Moki, Heather (red haired Minx!), Kathy, T (my girl!), Sweet Doni, and my great pal, Quix: Thanks so much for responding and sending support! I really love you all!
Jesserose~ Thank you for respoinding as well ~~ I'm eager to get to know you!
I appreciate all your notes, and wanted to give you an update. I phoned Elaine today, and plan to phone Quix and T,as well. (ess~ I need your number).
I had a sort of routine visit at my neuro's office today. I needed refills on my migraine and restless leg medications, or I would have considered skipping, since I have been so strong lately. My legs are actually doing pretty well. My only significant complaints are fatigue and chronic but mild vertigo.
So, I went today, expectations low, and just sort of being a med junkie, looking for refills. Dr. L examined me after we exchange pleasantries, and introduced me to the student who was shadowing him. Dr. L really is a fine gentleman. He has always been really kind to me.
SO, he tells me that my exam is surprisingly good. He seemed SO incredibly pleased at how my body was so strong. He genuinely seemed surprised, even though he usually downplays my weakness when I've seen him each time. He asked if I thought I was having problems with weakness. (No, now be quiet and give me my prescriptions.) I told him that lately I did feel quite strong. He told his student that in the past, he has been most concerned with the weakness in my legs, the left in particular. (Really?)
He looked over the blood tests I had done since my last visit to rule out vascular causes. All normal. Great. He asked if I had any complaints. I told him that I was really only having troouble with fatigue and mild vertigo. He asked more about the vertigo. Was this new? (No, we've been down this road before. Remember me?)
So I told him that the vertigo was pretty mild, but it has been chronic. I've had it since I talked to him in November. Now I had his attention. I told him that while in Orlando last week for a church conference (that's my story and I'm sticking to it!) I laid out in the sun by the pool for two hours (fell asleep), and had trouble getting back to my room. I was SO dizzy and had to lie down for a few hours with my eyes closed.
I was also having trouble with focusing my eyes. He really was hanging on every word now. He came over and looked at my eyes with the little eye instrument, lights off. I'm sure my optic nerves were fine. I think the focus problems I have are from some kind of nystagmus. But he was listening.
He continued with a very short exam. I thin it went very well. He didn't check my balance, which is very off now, but I really was just there for meds with no hope of making any progress with him. My reflexes were brisk in my right arm (new -- have been having paresthieias in my right hand for a while now) and in both legs. He showed the student again.
He announced that he wanted to focus on the vertigo now that my weakness wasn't such a concern for him. He said that usually I have SO much going on, and now that things were looking so much better, he'd concentrate on the vertigo. (Who IS this man, and what horrid thing has he done to my sweet but daft neurologist?!)
He said he wanted to do an evoked potential test of my ears, and do the caloric testing as well. He asked how my hearing was. I reminded him that I have hearing aids and just made an appointment with my audiologist because I think the hearing in my right ear is getting worse. He buzzed the tuning fork behind and in front of each ear, hearing aids in. My right ear is MUCH worse.
He told me to keep the app't with my audiologist and asked if I culd come to have the vertigo testing done TOMORROW, which I thought seemed weird. I can't, but will go on Monday.
He asked me to be patient while he went through my whole chart. He joked that it would take a while, since it's so thick. I giggled politely, as I am wont to do.
He spoke quietly to the student, going over all the testing I've had, and how everything has come up normal. He ticked off so many, many tests, and told the student how each ruled out what. He then said.... (drumroll....).. So, this really just leaves MS, even though her MRIs have been normal. Brain, spine MRIs. Her last LP was pretty normal, too.
WHAT? Who IS this? Did he just say MS out loud? Does he KNOW he just said MS out loud?
I let it go. I don't know why, but I let it go. I don't think I'm ready to go there. And I don't think that's his diagnosis. I really think, though, that it's his "working diagnosis," as his partner sort of suggested when I saw him in Dr. L's stead last month. (Elaine thinks his partner may have suggested MS to him when they spoke about my right foot weakness.)
Hmmm. Weird. Don't quite know what to make of this. Is it progress? I am not sure. It feels so strange, I can't tell you.
Thanks for listening to another long rubbish-y story.
Peace to all,
Zilla*
hi, nice to meet you. I'm new here and one of those limboland dwellers.
It bothers me that people have this, and bothers me that so many people have bad things happen to them with no firm dx, but it comforts me that I am not alone. I had many sleepless nights feeling very helpless and alone. I am still questioning my sanity, but I think we've all been there. We know 'something' is wrong, have classic symptoms of something, yet we don't know what. We expect a dx bc our body is doing such crazy things, but we don't necessarily get one.
Best of luck in the new year and I hope you get answers and relief from all of this.
Take care.
It bothers me that people have this, and bothers me that so many people have bad things happen to them with no firm dx, but it comforts me that I am not alone. I had many sleepless nights feeling very helpless and alone. I am still questioning my sanity, but I think we've all been there. We know 'something' is wrong, have classic symptoms of something, yet we don't know what. We expect a dx bc our body is doing such crazy things, but we don't necessarily get one.
Best of luck in the new year and I hope you get answers and relief from all of this.
Take care.
Hey, Stinky, I'm late with the greetings but I took some time off. It is good to see you back and it just reminds me of how much I enjoy you here on the frontier. I do (sort of) understand your need to stay away - and what this forum reminds you of, but I also need you here to help make us complete. Please consider more frequent drop-ins. You have so much to offer and share - and you give what so few can - a guaranteed chuckle.
I also understand that each of us in our own time needs the Witless Protection Agency. So disappear if you must, but realize that you leave behind people hungry to hear from you.
Also, we must pay really close attention to your gentle warning about our "Doctor-Shopping." You bring up a very important point about what we are truly looking for when we decide to move on to another doctor/neuro. It's important that no one miss this point. What we look for in a neurologist - or any physician really - is someone who will take us seriously, look for and "at" all of the evidence, listen to us (for we know our bodies best) and to think hard.
No of us should fall into the trap or rut of looking for a doctor who heads straight toward MS without great thought. We should never shop for a diagnosis. Some of our neuros clearly have the qualities we are looking for, but move with hesitation and caution. This is not really a bad thing, unless they are never able to move "off the fence."
When the doctor is trying hard, I do believe we should give the benefit of the doubt and stay with him/her long enough for them to see us and get a sense of our on-going story and history. They will likely move in the proper direction sooner than later. We also must keep in mind the negative impact that seeing a laundry list of half a dozen neurologists has on a new one that we are seeing and hoping will take us seriously.
Given all of this , I still believe we should not waste our time with a phsyician who is dismissive, condescending, stupid, or misinformed. But, when one is trying and thinking and investigating - we should practice patience.
So, thanks, Stinky, and please come by more often. You are a Foundling Mother of the forum, you know.
And may you have a wonderful and revealing New Year.
Quixter
I also understand that each of us in our own time needs the Witless Protection Agency. So disappear if you must, but realize that you leave behind people hungry to hear from you.
Also, we must pay really close attention to your gentle warning about our "Doctor-Shopping." You bring up a very important point about what we are truly looking for when we decide to move on to another doctor/neuro. It's important that no one miss this point. What we look for in a neurologist - or any physician really - is someone who will take us seriously, look for and "at" all of the evidence, listen to us (for we know our bodies best) and to think hard.
No of us should fall into the trap or rut of looking for a doctor who heads straight toward MS without great thought. We should never shop for a diagnosis. Some of our neuros clearly have the qualities we are looking for, but move with hesitation and caution. This is not really a bad thing, unless they are never able to move "off the fence."
When the doctor is trying hard, I do believe we should give the benefit of the doubt and stay with him/her long enough for them to see us and get a sense of our on-going story and history. They will likely move in the proper direction sooner than later. We also must keep in mind the negative impact that seeing a laundry list of half a dozen neurologists has on a new one that we are seeing and hoping will take us seriously.
Given all of this , I still believe we should not waste our time with a phsyician who is dismissive, condescending, stupid, or misinformed. But, when one is trying and thinking and investigating - we should practice patience.
So, thanks, Stinky, and please come by more often. You are a Foundling Mother of the forum, you know.
And may you have a wonderful and revealing New Year.
Quixter
Z,
BUMPING THIS BACK UP SO YOU SEE OUR RESPONSES,HOPING YOUR TAKING CARE OF YOURSELF.
WERE PRAYING YOU FIND DR.RIGHT AND GET THE DX,I PRAY ALL THE UN DX'D GET DR.RIGHT AND GET ANSWERS
WE MISS YA
T
BUMPING THIS BACK UP SO YOU SEE OUR RESPONSES,HOPING YOUR TAKING CARE OF YOURSELF.
WERE PRAYING YOU FIND DR.RIGHT AND GET THE DX,I PRAY ALL THE UN DX'D GET DR.RIGHT AND GET ANSWERS
WE MISS YA
T
Oh my, two of my favorite people, Zilla and T. I miss you guys soooooo much and wish you were back on the forum regularly.
That was a great post Zil, and you know I'm right here with you. I haven't been through as much as you, cause I just never thought about all these things going wrong with me until last year, when it all just went haywire.
I pray for all of us in limbo h e l l to find our answers in 2009. And pray for better diagnostics for MS in the future.
I too have many questions about gray matter, did some research but when my computer died, I lost it all. I'm gonna look for my post and check some of the websites I had listed.
Take care my sweet friend, please try to come see us more often. Just seeing your name on the forum brightens my day.
Love & Hugs,
doni
That was a great post Zil, and you know I'm right here with you. I haven't been through as much as you, cause I just never thought about all these things going wrong with me until last year, when it all just went haywire.
I pray for all of us in limbo h e l l to find our answers in 2009. And pray for better diagnostics for MS in the future.
I too have many questions about gray matter, did some research but when my computer died, I lost it all. I'm gonna look for my post and check some of the websites I had listed.
Take care my sweet friend, please try to come see us more often. Just seeing your name on the forum brightens my day.
Love & Hugs,
doni
Z,
MY MICHIGAN FRIEND, I THINK OF YOU DAILY AND HAVE BEEN WORRYING ABOUT YOU.
I'LL WRITE MORE LATER, BUT DO YA EVER SEE MY DOC HARRY H---BLUE EYES,
I HAVE BEEN IN CONTACT WITH HIM, HE IS WILLING TO DO A VERY RADICAL SURGERY AND IS DOING HIS BEST TO TRY TO GET MY INSURANCE TO PAY FOR IT.
IT WOULD BE A MANDATORY 2 WEEK HOSPITAL STAY MINIMUM AT BEUMONT(SP).HE'S THE ONLY DR. I TRUST TO DO IT.
HE GAVE ME MY LEGS BACK ONCE, BUT DOES AGREE AT THIS POINT A BILATERAL DORSAL RHYZONOMY IS MY ONLY HOPE.
I WISH I HAD ANSWERS FOR YOU, KEEP LISTENING TO YOUR BODY, THEY WILL FIND THE CAUSE.I COMPLETELY UNDERSTAND THE FRUSTRATION PART,WISH I WAS THERE TO GIVE YA A GREAT BIG HUG,DON'T THINK YA WOULD WANT THAT RIGHT NOW---BATTLING BACTERIAL PNEMONIA.
BUT A VIRTUAL HUGE HUG MY FRIEND,I HOPE IT HELPS A LITTLE.
PRAYERS AND HUGS
T-LYNN
MY MICHIGAN FRIEND, I THINK OF YOU DAILY AND HAVE BEEN WORRYING ABOUT YOU.
I'LL WRITE MORE LATER, BUT DO YA EVER SEE MY DOC HARRY H---BLUE EYES,
I HAVE BEEN IN CONTACT WITH HIM, HE IS WILLING TO DO A VERY RADICAL SURGERY AND IS DOING HIS BEST TO TRY TO GET MY INSURANCE TO PAY FOR IT.
IT WOULD BE A MANDATORY 2 WEEK HOSPITAL STAY MINIMUM AT BEUMONT(SP).HE'S THE ONLY DR. I TRUST TO DO IT.
HE GAVE ME MY LEGS BACK ONCE, BUT DOES AGREE AT THIS POINT A BILATERAL DORSAL RHYZONOMY IS MY ONLY HOPE.
I WISH I HAD ANSWERS FOR YOU, KEEP LISTENING TO YOUR BODY, THEY WILL FIND THE CAUSE.I COMPLETELY UNDERSTAND THE FRUSTRATION PART,WISH I WAS THERE TO GIVE YA A GREAT BIG HUG,DON'T THINK YA WOULD WANT THAT RIGHT NOW---BATTLING BACTERIAL PNEMONIA.
BUT A VIRTUAL HUGE HUG MY FRIEND,I HOPE IT HELPS A LITTLE.
PRAYERS AND HUGS
T-LYNN
Hi there, wonderful woman, it's good to see you again, though I'm too tired to say much.
Luckily, all those above said the things that I'd have said if I had the brain power and energy.
Hugs and love,
Kathy
Luckily, all those above said the things that I'd have said if I had the brain power and energy.
Hugs and love,
Kathy
It's so good to hear from you, our precious lady. I know that you are so busy with your new job that you have little chance to get on the forum and post. But glad you made it out of the hectic life, to contact us. Lots of smiles on this side of the Forum.
Quix and I both have started threads asking for a number of those that are still not diagnosed. The number is pretty high. Too high. I truly believe that if the diagnosis were based on physical findings, like they were in the days before MRI; there would not be so many people still in Limbo. Don't ya think? Maybe modern technology has actually hurt some of those people. If there isn't any lesions that they can see, poof you don't have MS. As Ess said, when they are able to look at the grey matter with more precision, more Limbo landers possibly would have the answers they seek.
Great to "see" you post, but sorry that you are still feelings so lousy. Let's hope 2009 provides the answer for all of you.
Huggie Wuggies,
Heather
Quix and I both have started threads asking for a number of those that are still not diagnosed. The number is pretty high. Too high. I truly believe that if the diagnosis were based on physical findings, like they were in the days before MRI; there would not be so many people still in Limbo. Don't ya think? Maybe modern technology has actually hurt some of those people. If there isn't any lesions that they can see, poof you don't have MS. As Ess said, when they are able to look at the grey matter with more precision, more Limbo landers possibly would have the answers they seek.
Great to "see" you post, but sorry that you are still feelings so lousy. Let's hope 2009 provides the answer for all of you.
Huggie Wuggies,
Heather
It's so good to see you on here Zilla!! Happy New Year to you too.
You wrote a really good post and I know that fellow limbo landers like myself will relate to it. This is a really frustrating process to say the least.
I do agree with Ess and Shell though that you have had clinical signs. I just pray that some day soon someone will be able to put this all together for you and get you a diagnosis!!
Hang tight Z, we limbo landers will make it through yet!!
Hugs
Moki
You wrote a really good post and I know that fellow limbo landers like myself will relate to it. This is a really frustrating process to say the least.
I do agree with Ess and Shell though that you have had clinical signs. I just pray that some day soon someone will be able to put this all together for you and get you a diagnosis!!
Hang tight Z, we limbo landers will make it through yet!!
Hugs
Moki
Hi Honey!
Yea, yea, excuses, excuses...ha/ha... You know I'm only kidding. BUT, just don't want you justifying the "possibly" whys and "if's" you've experienced through this continuing journey.
You, me and the lot of us do make up excuses sometimes as to why things are as they are. It's just something we do. Because we feel the "we must" of contributed to our situation in some manner haven't we? We must of made a mistake along the way that messed up what "could" or "should" have been.
Well, Missy Poo, I agree with Ess that you do have countless clinical signs. I think you know this too, but have found a way to get through this stretch. It's ok. We do this. We do this for our sanity and to ease our minds and to get through our symptoms.
I'm so glad you've written this up. So many are experiencing it as we speak and they don't know our Mama Z! Please come along more often. Won't you? Teach us what you know and just be here with us when you can.
To say I miss you just doesn't describe it, but I do, and I hope you know this. I'm glad your holidays were great. Ours were too and all were home for a little while, even Jr.
Sending God's peace and blessings back to you and lots of (((hugs))),
Shell
Yea, yea, excuses, excuses...ha/ha... You know I'm only kidding. BUT, just don't want you justifying the "possibly" whys and "if's" you've experienced through this continuing journey.
You, me and the lot of us do make up excuses sometimes as to why things are as they are. It's just something we do. Because we feel the "we must" of contributed to our situation in some manner haven't we? We must of made a mistake along the way that messed up what "could" or "should" have been.
Well, Missy Poo, I agree with Ess that you do have countless clinical signs. I think you know this too, but have found a way to get through this stretch. It's ok. We do this. We do this for our sanity and to ease our minds and to get through our symptoms.
I'm so glad you've written this up. So many are experiencing it as we speak and they don't know our Mama Z! Please come along more often. Won't you? Teach us what you know and just be here with us when you can.
To say I miss you just doesn't describe it, but I do, and I hope you know this. I'm glad your holidays were great. Ours were too and all were home for a little while, even Jr.
Sending God's peace and blessings back to you and lots of (((hugs))),
Shell
I wish that you could see the Drs on TV's House and that in a week there would be a diagnosis. Would't that be great! 4 or 5 Drs working around the clock until there is an answer and you could be sent home with the right treatment and all would be great in the world. Unfortunately it does not happen like that as you well know. I was in "limbo land" for years and I was miserable and afraid of my body and what it would do next. I will be thinking about you and wishing you answers for the new year.
Christy D
Christy D
Hey, lady! Where have you been? I thought you'd gone underground or into the witness protection program or some such.
We have a great many new members, and I know that some will get a boost from reading about your misadventures in limboland. Thank you for helping these folks verify that they are emphatically not nuts. I guess there are a great many people who start dragging a foot or have a clear bout of ON, go through a few tests and get a prompt diagnosis of MS. As you well know, such people are in the distinct minority on this forum. The big majority here, even among those diagnosed, have suffered in limboland as you have. That certainly includes me. So again thanks to a long-time member who is as frustrated as frustrated gets.
As to you, I disagree that you have no clinical evidence. You have lots of "signs." But with no corroborating evidence via MRI or LP, you're stuck, until some doctor goes out on a limb. I for one am betting that if there were a good way of verifying damage to the gray matter, you'd have been diagnosed long ago.
A most happy new year to you and all the boys, incl. husband. Please check in here much more often!
Much luv,
~
We have a great many new members, and I know that some will get a boost from reading about your misadventures in limboland. Thank you for helping these folks verify that they are emphatically not nuts. I guess there are a great many people who start dragging a foot or have a clear bout of ON, go through a few tests and get a prompt diagnosis of MS. As you well know, such people are in the distinct minority on this forum. The big majority here, even among those diagnosed, have suffered in limboland as you have. That certainly includes me. So again thanks to a long-time member who is as frustrated as frustrated gets.
As to you, I disagree that you have no clinical evidence. You have lots of "signs." But with no corroborating evidence via MRI or LP, you're stuck, until some doctor goes out on a limb. I for one am betting that if there were a good way of verifying damage to the gray matter, you'd have been diagnosed long ago.
A most happy new year to you and all the boys, incl. husband. Please check in here much more often!
Much luv,
~
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