Aa
should we be satisfied with never knowing what is wrong?
Hello everyone. I'm really curious if it's just me, or does everyone else have this strong need to know what is wrong? The reason I'm asking is that my PCP made this (what I consider) outlandish statement about how I may just have to be satisfied with the fact that they will never know what is wrong with me.
This statement makes me think several things. First of all, he doesn't really get how this illness is affecting my life. Second of all, he is trying to placate me. OK, I get that none of need to sit around and dwell on our illnesses, diagnosed, or not. But, I think we do need to keep plugging away to find answers.
I don't know why this bothers me so much. I think it just dredges up all of the horrible experiences I've had with doctors since I began my search for answers. Plus, I thought I'd finally found someone who was going to work with me to find answers. And now it seems as if he just wants to send me on my way.
I don't believe we need to be in the doctor's office getting test after test, but when things change, or worsen, then I think it's time to get back to looking for a cause.
I also think it's so easy for medical professionals to make these assumptions about us based on our actions and comments in their exam rooms. Because of what I've been through, I do tend to be anxious when I'm at the doctors. Especially when I'm not feeling well. Or as it was in last weeks case, I felt as if I was about to have a bowel accident.
What are your thoughts on this? Please both undiagnosed, and diagnosed (what made you keep looking for answers? Did some doctors imply you should just give up?) tell me what you think.
I'm looking forward to your comments.
This statement makes me think several things. First of all, he doesn't really get how this illness is affecting my life. Second of all, he is trying to placate me. OK, I get that none of need to sit around and dwell on our illnesses, diagnosed, or not. But, I think we do need to keep plugging away to find answers.
I don't know why this bothers me so much. I think it just dredges up all of the horrible experiences I've had with doctors since I began my search for answers. Plus, I thought I'd finally found someone who was going to work with me to find answers. And now it seems as if he just wants to send me on my way.
I don't believe we need to be in the doctor's office getting test after test, but when things change, or worsen, then I think it's time to get back to looking for a cause.
I also think it's so easy for medical professionals to make these assumptions about us based on our actions and comments in their exam rooms. Because of what I've been through, I do tend to be anxious when I'm at the doctors. Especially when I'm not feeling well. Or as it was in last weeks case, I felt as if I was about to have a bowel accident.
What are your thoughts on this? Please both undiagnosed, and diagnosed (what made you keep looking for answers? Did some doctors imply you should just give up?) tell me what you think.
I'm looking forward to your comments.
Lately I've been watching this program on TV that fits this subject perfectly. It's called Mystery DX and it's on The Discovery Health Channel. (I highly recommend it). It's about people who go through heck and back trying to find out what was wrong with them or their family member. It shows the bad and good side of medical DX. A lot of the complaints of these patients mirrors this forum. It's almost scary. These people are told by their doctors anything from "There's nothing wrong with you", "It's all in your head", to "Your suffering from depression" etc etc...
These people go years from doctors to doctors and sometimes they start to turn to the internet to try to find the answers themselves because deep down they know somethings wrong. They have SX of something wrong but the medical field lets them down time after time. Sound familiar?
On a lighter note, at the end of the story after the patient or family member persisting through let down after let down, they finally find that special doctor. The one that takes notice. The one that listen and they get a DX. In some cases on the show, if they would have given up, it would have hurt their bodies worse than they were already hurt.
So I say, stick with the fight, as long as possible. Persistence is the key. We know our bodies better than any doctor. We know how we use to feel compared to how will feel now. We know what we use to be able to do, compared to what we can do now. Do I know for sure what I have or any answers? No! Unfortunately. And I'm not going to stop until I do.
These people go years from doctors to doctors and sometimes they start to turn to the internet to try to find the answers themselves because deep down they know somethings wrong. They have SX of something wrong but the medical field lets them down time after time. Sound familiar?
On a lighter note, at the end of the story after the patient or family member persisting through let down after let down, they finally find that special doctor. The one that takes notice. The one that listen and they get a DX. In some cases on the show, if they would have given up, it would have hurt their bodies worse than they were already hurt.
So I say, stick with the fight, as long as possible. Persistence is the key. We know our bodies better than any doctor. We know how we use to feel compared to how will feel now. We know what we use to be able to do, compared to what we can do now. Do I know for sure what I have or any answers? No! Unfortunately. And I'm not going to stop until I do.
I can relate to your question very well. I am wanting to know answers because for so long i was very active and had such a great feeling for looking forward to everyday. In relatively short time I have lost so much I feel in the last two years. I play no golf which was a huge part of my life. i want to know why I cannot enjoy that any more. I met my wife playing golf, we cannot share that special time anymore. I know it hurts her. I have a five year old that I want to coach his little league ball team, like I did for my older son. I want to stand next to both when they marry, I want to be able to play with my grandchildren. These are reasons that I keep seaching for answers. i hope this helps you. There are days where I want to give up and quit, sure but I remeber the good things and the reasons why I cannot and my attitude changes.
Doctors now days, in my opinion can only DX things that are textbook simple. They have less experience. I always joke I wish my pediatrian doctor was still around. He was the best. I wish I could still go to him and get his opinion. Those days are gone and medicine has changed. Sometimes for the worse. Good luck, keep seaching until YOU are satisfied. God bless you !!!! mike
Doctors now days, in my opinion can only DX things that are textbook simple. They have less experience. I always joke I wish my pediatrian doctor was still around. He was the best. I wish I could still go to him and get his opinion. Those days are gone and medicine has changed. Sometimes for the worse. Good luck, keep seaching until YOU are satisfied. God bless you !!!! mike
No, I don't believe we should ever be satisfied with not knowing what is wrong with us.
Up until January of 1998, I was the healthiest person walking the earth. I contracted a Virus at Christmas '97, and after that, I was never the same again.
If I had given up after the first 7 doctors that had no idea....
My Hypo/Hashi's would not have been diagnosed, and my bone loss would have been even worse, than having the hip bones of a 90 year old at age 46, 9 years ago.
If I had given up, my Ankylosing Spondylitis would not have been dx'd.
If I had given up, my Small Fiber Neuropathy would not have been diagnosed.
I have lost all my bowel function, and you can be sure, I won't be satisfied until I know the reason why.
One thing I've learned is that you have to be pro-active in your health care.
We know our bodies. We know when something is wrong.
Sheila
Up until January of 1998, I was the healthiest person walking the earth. I contracted a Virus at Christmas '97, and after that, I was never the same again.
If I had given up after the first 7 doctors that had no idea....
My Hypo/Hashi's would not have been diagnosed, and my bone loss would have been even worse, than having the hip bones of a 90 year old at age 46, 9 years ago.
If I had given up, my Ankylosing Spondylitis would not have been dx'd.
If I had given up, my Small Fiber Neuropathy would not have been diagnosed.
I have lost all my bowel function, and you can be sure, I won't be satisfied until I know the reason why.
One thing I've learned is that you have to be pro-active in your health care.
We know our bodies. We know when something is wrong.
Sheila
Right on!!!! Thanks so much for this. I've been told by my neuro and my GP that they may never know what is wrong with me. (However, my GP just told me that he thinks it's probably a very mild, slow MS but there's nothing he can do until I get double vision, a numb face or my foot drags...). So, I am doing the best I can and letting it go until something happens to make the doctors take notice.
I am scheduled for another MRI/blood test round in six months. But I'm sick and tired of worrying. stressing, spending all my time online trying to find out what might be wrong. I keep up on the MS stuff and just try to live my life.
Each of us has to do what feels right and best for US as individuals. We all have our own health (physical and mental) that we need to safeguard in our own way.
I wish everyone luck in finding their answers. Perhaps the day will come when people like us will get a quick diagnosis of whatever if wrong with us, but unitl then, we have to find our own path out of the woods!
I am scheduled for another MRI/blood test round in six months. But I'm sick and tired of worrying. stressing, spending all my time online trying to find out what might be wrong. I keep up on the MS stuff and just try to live my life.
Each of us has to do what feels right and best for US as individuals. We all have our own health (physical and mental) that we need to safeguard in our own way.
I wish everyone luck in finding their answers. Perhaps the day will come when people like us will get a quick diagnosis of whatever if wrong with us, but unitl then, we have to find our own path out of the woods!
My dh (my dddh!) told me to tell you all this:
If I put a needle in a haystack, and you can't find it, it doesn't mean there isn't a needle in a haystack.
Suzanne
If I put a needle in a haystack, and you can't find it, it doesn't mean there isn't a needle in a haystack.
Suzanne
You need to seek a diagnosis. Don't accept the "you may never know what's wrong with you" statement--that statement to me is showing that he's giving up! You can't be giving up with the issues you're having. Sheeesh! Is your doctor waiting for you to be unable to swallow completely? Or how 'bout not being able to walk after having a nasty fall?
I've gone years not knowing what was wrong with me, and it is a relief when you finally are diagnosed. I finally have some hope that the medicine will put an end (or at least help slow down) the progression of problems I'm having.
I wished I had the diagnosis years ago, because some of the symptoms have never gone away :( With four lesions and the symptoms you've mentioned, you have some real neurological issues. You don't want any more problems to appear and stick around!
Keep on keepin' on . . . even it means traveling three hours to see your doctor!!!!!
Deb
I've gone years not knowing what was wrong with me, and it is a relief when you finally are diagnosed. I finally have some hope that the medicine will put an end (or at least help slow down) the progression of problems I'm having.
I wished I had the diagnosis years ago, because some of the symptoms have never gone away :( With four lesions and the symptoms you've mentioned, you have some real neurological issues. You don't want any more problems to appear and stick around!
Keep on keepin' on . . . even it means traveling three hours to see your doctor!!!!!
Deb
I think that so many of you are so wonderfully strong!
I know that your continual searches inspire me and others.
I was so glad to read some of these posts as my family thinks that I should just quit going to doctors, even since I have had three say probable MS, one probably lupus, one unsure just what is going on, and one think that I was just a hypochondriac with lesions of the spinal cord, weakness, vision and memory problems, tremors, etc. Finally, a neuro said that he was in the business thirty years and that there was not doubt in his mind....He said that all these doctors do not really need all these tests all the time and that sometimes the tests just confuse the issues. He diagnosed me on the second visit after getting my MRI results. I was just so relieved to have a name and have some validation and feeling of control in my health: particularly after my mother told me that if I had MS that everything was a waste. Even my hard work and education were a waste. My family told me that I should just quit seeing doctors and get back to working hard...After all, I have a college degree. Well, I am still "me". I just have an illness that I need to understand and work with. Education is power. But, I am not the same person physically that I was years ago. No one else has walked in our shoes. So, we have to stick up for ourselves when we know that something is wrong. So many times by the time it is obvious that a person has MS, the disease has really progressed. Earlier discovery and treatment can be key to a more promising future.
I think it is easier to get on with life after you have a answer of "what?" and perhaps "why?" and "what can I do to ameliorate the situation as best as possible?".
I do this not only for me; but, for my family. If there is a genetic or environmental component that can affect them also; then, I want to know so that they can be forewarned and be helped as best as possible also.
I am so glad to see so many of you supportively jump on the band-wagon here.
I read a book that was published by several women with MS from an internet web site such as this one. They have become a family and even financially helped one lady when she was really needing some A/C. I wish I could remember the book. It was full of truth and so much humor! A neurologist stated that he wished every neuro read it. He said it changed his entire prespective of how he was treating his patients and how he was ignoring certain areas such as pain and sex and other life issues.
You are such a great group of people!
Take care and God bless!
Torey
I know that your continual searches inspire me and others.
I was so glad to read some of these posts as my family thinks that I should just quit going to doctors, even since I have had three say probable MS, one probably lupus, one unsure just what is going on, and one think that I was just a hypochondriac with lesions of the spinal cord, weakness, vision and memory problems, tremors, etc. Finally, a neuro said that he was in the business thirty years and that there was not doubt in his mind....He said that all these doctors do not really need all these tests all the time and that sometimes the tests just confuse the issues. He diagnosed me on the second visit after getting my MRI results. I was just so relieved to have a name and have some validation and feeling of control in my health: particularly after my mother told me that if I had MS that everything was a waste. Even my hard work and education were a waste. My family told me that I should just quit seeing doctors and get back to working hard...After all, I have a college degree. Well, I am still "me". I just have an illness that I need to understand and work with. Education is power. But, I am not the same person physically that I was years ago. No one else has walked in our shoes. So, we have to stick up for ourselves when we know that something is wrong. So many times by the time it is obvious that a person has MS, the disease has really progressed. Earlier discovery and treatment can be key to a more promising future.
I think it is easier to get on with life after you have a answer of "what?" and perhaps "why?" and "what can I do to ameliorate the situation as best as possible?".
I do this not only for me; but, for my family. If there is a genetic or environmental component that can affect them also; then, I want to know so that they can be forewarned and be helped as best as possible also.
I am so glad to see so many of you supportively jump on the band-wagon here.
I read a book that was published by several women with MS from an internet web site such as this one. They have become a family and even financially helped one lady when she was really needing some A/C. I wish I could remember the book. It was full of truth and so much humor! A neurologist stated that he wished every neuro read it. He said it changed his entire prespective of how he was treating his patients and how he was ignoring certain areas such as pain and sex and other life issues.
You are such a great group of people!
Take care and God bless!
Torey
My very first visit with my neuro asked me if I could just go and live with not knowing what is wrong! I said no - I have to know what is wrong with me - I was not like this before and need to know how and why this is happening with me to fix it.
Lynette
Lynette
In December of last year, as Craig was on his fourth neurologist, the neuro in Philadelphia actually told him that he is better off NOT KNOWING what is wrong with him. That not knowing will make his life easier. I think it makes the doctor's life easier, not the patient's life.
Craig has 20 lesions and brain atrophy, has spasticity and is losing leg function. So he was desperate to find out what is wrong so he could get better.
The MS neuro in Univ of Maryland was his sixth neurologist. He was the one to finally admit that it is most likely MS and wants another brain MRI.
So yes, if you have lesions, keep going to doctors. If you don't, you have a longer road ahead. This whole process of going to multiple doctors has hurt our family and ruined the faith of our children in the medical profession as they have watched their father worsen with no help given to him.
I hope you can get some peace. And a diagnosis. Keep trying.
Elaine
Craig has 20 lesions and brain atrophy, has spasticity and is losing leg function. So he was desperate to find out what is wrong so he could get better.
The MS neuro in Univ of Maryland was his sixth neurologist. He was the one to finally admit that it is most likely MS and wants another brain MRI.
So yes, if you have lesions, keep going to doctors. If you don't, you have a longer road ahead. This whole process of going to multiple doctors has hurt our family and ruined the faith of our children in the medical profession as they have watched their father worsen with no help given to him.
I hope you can get some peace. And a diagnosis. Keep trying.
Elaine
Yes, I can see why you HAVE to pursue this. You must! And I'm glad you didn't take offense at what I said. It's just where I am right now, with not one lesion and all normal test results. (Although I have very low Vitamin D, as well!)
I just wanted to make the point, that for some of us, we have to stop obsessing at every little zap, and just see what comes out in the wash. For our mental health.
I really think you have to keep pressing. Especially with your lesions. And now with the swallowing, too. That can be troublesome. I hope it eases for you.
Keep pushing, and feel well,
Many hugs,
Zilla*
I just wanted to make the point, that for some of us, we have to stop obsessing at every little zap, and just see what comes out in the wash. For our mental health.
I really think you have to keep pressing. Especially with your lesions. And now with the swallowing, too. That can be troublesome. I hope it eases for you.
Keep pushing, and feel well,
Many hugs,
Zilla*
I'm sorry for all that you are going through. I am so glad that you found someone who is trying to find answers for you.
You are right, I need to tell him how I feel. I'm not always so good about this. Because it is important that I have someone locally who will go to bat for me I have to know that he will be willing if not, I will move on.
I did find out that my former PCP is willing to take me back. She's a wonderful doctor. The only reason I left her is because my PT convinced me to see her doctor (my current PCP) because she thought he could help. In the beginning, it seemed as if he would, now maybe he's lost interest in my case. I don't know.
More than likely I will go back to my former PCP. One reason is that my oldest DD will have her last appointment with her pediatrician this summer (sniff, sniff). I need to find a new doctor for her, and my old PCP would be a perfect fit (I'd already discussed her taking my daughters a few years ago).
OK. I'm done rambling.
Thanks Rena and everyone for your help. Reading all of your posts has helped me work through some things.
You are right, I need to tell him how I feel. I'm not always so good about this. Because it is important that I have someone locally who will go to bat for me I have to know that he will be willing if not, I will move on.
I did find out that my former PCP is willing to take me back. She's a wonderful doctor. The only reason I left her is because my PT convinced me to see her doctor (my current PCP) because she thought he could help. In the beginning, it seemed as if he would, now maybe he's lost interest in my case. I don't know.
More than likely I will go back to my former PCP. One reason is that my oldest DD will have her last appointment with her pediatrician this summer (sniff, sniff). I need to find a new doctor for her, and my old PCP would be a perfect fit (I'd already discussed her taking my daughters a few years ago).
OK. I'm done rambling.
Thanks Rena and everyone for your help. Reading all of your posts has helped me work through some things.
You haven't offended me at all. And what you say makes perfect sense. I'm glad you have a peace with where you are in the dx journey. I was right there with you up until a few weeks ago. Then, I started choking on my food, had pain and weakness in my legs, etc It's hard to be peaceful when your body is starting to fall apart.I'm so hoping after I get over this flare that I will be able to go back to that place of peace again.
I failed to mention that I do have an MS specialist who appears to be trying to help me. The problem is, she is three hours away. My PCP handles my local care. I so needed him to be on my side because to help with those urgent concerns.
I shared a little of my story above. I have four lesions, in addition to the other positive test. I have had a series of attacks with remissions in between. All of this,I think, compounds my frustrations of not being dx'd.
I think another thing that has caused me to be impatient with the whole process, besides my recent relapse, is my swallowing trouble, and the results of the swallowing test.The test showed I have a delay when swallowing liquids. I was over the worst of my choking spells when the test was done, so I didn't expect it to show anything. I'm supposed to go back in for another test if I start to have trouble swallowing solids again.
I'm right there with you with the weight loss and sunshine (will help with my Vitamin D deficiency too). I am trying to take control over everything that I can. That helps make the whole process a little easier to bear.
Thanks again.
I failed to mention that I do have an MS specialist who appears to be trying to help me. The problem is, she is three hours away. My PCP handles my local care. I so needed him to be on my side because to help with those urgent concerns.
I shared a little of my story above. I have four lesions, in addition to the other positive test. I have had a series of attacks with remissions in between. All of this,I think, compounds my frustrations of not being dx'd.
I think another thing that has caused me to be impatient with the whole process, besides my recent relapse, is my swallowing trouble, and the results of the swallowing test.The test showed I have a delay when swallowing liquids. I was over the worst of my choking spells when the test was done, so I didn't expect it to show anything. I'm supposed to go back in for another test if I start to have trouble swallowing solids again.
I'm right there with you with the weight loss and sunshine (will help with my Vitamin D deficiency too). I am trying to take control over everything that I can. That helps make the whole process a little easier to bear.
Thanks again.
I really like what you said: "I keep looking for answers because I don’t want my future to be like my present" That is so insightful.
I suppose another spin on it would be we need to keep looking for answers because we don't want our future to be worse than the present. That is a very real worry for me as I have clearly progressed over the past year.
Thanks for your support.
I suppose another spin on it would be we need to keep looking for answers because we don't want our future to be worse than the present. That is a very real worry for me as I have clearly progressed over the past year.
Thanks for your support.
It does seem as though Tammy has got us thinking about things a little bit differently. Yea Tammy!!
I totally get the guilt thing about medical tests. The money thing just adds a whole different dimenson to this limbo thing, doesn't it?
I feel so blessed to have found this place. It's like no other forum I've been on. I truly do feel like I can make it through this with all of your support.
Thanks for your input.
By the way, I like your user name.
I totally get the guilt thing about medical tests. The money thing just adds a whole different dimenson to this limbo thing, doesn't it?
I feel so blessed to have found this place. It's like no other forum I've been on. I truly do feel like I can make it through this with all of your support.
Thanks for your input.
By the way, I like your user name.
You are so, so right about thinking about how we would handle things if this was one of our children!!! I'm not sure I've ever thought about it that way. But, it makes so much sense.
I know what you mean about the positive test results being so validating. The trouble is, I have a whole slew of positive tests (MRI's, urodynamics, ENG, neuropsych, swallow study), yet I still don't have a dx!!! Grrrrr!!!!
Thanks for helping me to see things a little more differently.
I know what you mean about the positive test results being so validating. The trouble is, I have a whole slew of positive tests (MRI's, urodynamics, ENG, neuropsych, swallow study), yet I still don't have a dx!!! Grrrrr!!!!
Thanks for helping me to see things a little more differently.
How horrible it must have been to have a diagnosis, then have it taken away!! I hope you have not become too disabled by your illness.
I think it's a good idea not to take records from other doctors. I have done this a time or two and wished I hadn't.
I know the doctors know how many others I've seen because they can see how many different ones ordered the tests. But, still, they can form their own opinions from them without looking at what the others have thought.
Good luck with the MS specialist!
I think it's a good idea not to take records from other doctors. I have done this a time or two and wished I hadn't.
I know the doctors know how many others I've seen because they can see how many different ones ordered the tests. But, still, they can form their own opinions from them without looking at what the others have thought.
Good luck with the MS specialist!
Thanks for your kind words. I am so glad you were able to find someone to help you. And that you finally got diagnosed.
If you don't mind me asking, how long did it take for you to get dx'd? I looked back at some of your old posts and I think you said you had Still's disease? I know that it pretty rare. You are lucky that someone picked up on it.
In my case, I have had many positive tests. Some auto immune blood work has been positive. Personally, I think I may have more than one thing going on, which really seems to confuse the heck out of the doctors.
Thanks again!
If you don't mind me asking, how long did it take for you to get dx'd? I looked back at some of your old posts and I think you said you had Still's disease? I know that it pretty rare. You are lucky that someone picked up on it.
In my case, I have had many positive tests. Some auto immune blood work has been positive. Personally, I think I may have more than one thing going on, which really seems to confuse the heck out of the doctors.
Thanks again!
Welcome to my world honey! That is exactly what my g.p. said to me this last January! She said, and I quote, "your neurologist has said that your MS is inactive and you may have to live with the fact that we may never know what is causing your pain."
When asked about the side effects that I was enduring from my meds she stated, and I quote, "you may have to learn to live with the side effects of these meds, you have to make a choice between the side effects or the pain, you may not have any choice."
Since that time, I have had an appointment made with a rheumatologist, I have been given a few different drugs to try, she has suggested neuropsych evaluation and in the last visit she seems to have taken some actual interest in my case and has done some research that she hadn't done previously. Now to tell you I was shocked was an understatement and I can't tell you that your doctor is going to have a turn around like this either. Actually to say this is my dr. doing a turn around is merely speculation...she might find a case that is of more interest this week and drop me like a hot potato next week...who knows?
All I know is that even after she said that, I haven't given up trying to find a diagnosis or a reason for my neuro to deny me the DMD's...sure I get frustrated and depressed and you will as well but I don't think that us taking our doctor's answer as the final answer is the way to go! Even when I was first diagnosed tentatively in 1993, the neuro I was seeing wouldn't label me as an MS patient until she got a second opinion!
I honestly believe that we cannot stop seeking out the care that we need and if your gp doesn't think that there will ever be an answer, keep pushing and if you feel that you have pushed this one as far as he will go...move on to a new doctor. I know this is all very difficult and I am on the same road as you are.
"Plus, I thought I'd finally found someone who was going to work with me to find answers. And now it seems as if he just wants to send me on my way." This is your statement that I copied and pasted...have you ever considered telling him that this is how you feel and if this is his way of thinking...it's his responsibility to move you on to someone else that may have other ideas or options to try! I think you should consider giving it a try honey...WE CAN'T GIVE UP...the pain isn't going away and we need help, we just have to find it!
Lots and Lots of Hugs,
Rena
When asked about the side effects that I was enduring from my meds she stated, and I quote, "you may have to learn to live with the side effects of these meds, you have to make a choice between the side effects or the pain, you may not have any choice."
Since that time, I have had an appointment made with a rheumatologist, I have been given a few different drugs to try, she has suggested neuropsych evaluation and in the last visit she seems to have taken some actual interest in my case and has done some research that she hadn't done previously. Now to tell you I was shocked was an understatement and I can't tell you that your doctor is going to have a turn around like this either. Actually to say this is my dr. doing a turn around is merely speculation...she might find a case that is of more interest this week and drop me like a hot potato next week...who knows?
All I know is that even after she said that, I haven't given up trying to find a diagnosis or a reason for my neuro to deny me the DMD's...sure I get frustrated and depressed and you will as well but I don't think that us taking our doctor's answer as the final answer is the way to go! Even when I was first diagnosed tentatively in 1993, the neuro I was seeing wouldn't label me as an MS patient until she got a second opinion!
I honestly believe that we cannot stop seeking out the care that we need and if your gp doesn't think that there will ever be an answer, keep pushing and if you feel that you have pushed this one as far as he will go...move on to a new doctor. I know this is all very difficult and I am on the same road as you are.
"Plus, I thought I'd finally found someone who was going to work with me to find answers. And now it seems as if he just wants to send me on my way." This is your statement that I copied and pasted...have you ever considered telling him that this is how you feel and if this is his way of thinking...it's his responsibility to move you on to someone else that may have other ideas or options to try! I think you should consider giving it a try honey...WE CAN'T GIVE UP...the pain isn't going away and we need help, we just have to find it!
Lots and Lots of Hugs,
Rena
I agree, of course with what everyone has said. I believe it's important to find out what's happening with your body, certainly, when you just know something is wrong.
The thing that is happening with me, lately, however, is that I'm getting some peace about the whole diagnosis journey.
I am having very strong parasthesias, every day in lots of new ways. I have episodes, although quite mild, of vertigo that do not affect my driving safety or make me feel ill. I have pain in my legs that sometimes makes it difficult for me to fall asleep. As some of you may remember, last year I had a few episodes of severe weakness in my legs that made it impossible for me to walk for a few days here and there. I haven't had that problem since October.
I have normal test results in just about everything that matters. I am feeling stronger and hopeful. I KNOW something either is or absolutely WAS terribly wrong with me. I have no objective evidence for a doctor to diagnose me right now. So, I have decided to relax about a diagnosis until my body screams that I need an answer.
I have seen some very good doctors that have given me what I think are incredible work-ups. My current neuro will follow up with me in June. That's fine with me. If everything is normal then, I'll wait it out. I'm putting my trust in him. He's not lazy; he's not dismissive. He's frustrated, like I am.
I am not saying there is nothing wrong with me. Nor am I saying that anyone WITH objective evidence shouldn't assertively pursue a diagnosis with a great doctor (maybe better than the one they've got). If you have lesions -- get a good doc to find out why! Pronto! As we know with MS, time is critical. (Tammy -- get 'er done!)
MOM -- I'm not saying you should relax and sit back, either. I'm sorry, but I don't recall your story and test results.
All I'm saying is I have probably not enjoyed my life as fully as I could have lately because I am sweating this diagnosis so crazily. It's hard not to do. Every twitch, every tingle, some weakness, the cramping....it's all difficult to ignore. But I want to get back to getting health under control: losing some weight I've packed on, sitting at this computer googling symptoms, instead of getting out in the fresh air. Looking for the sun.
It's hard. I know. There IS or was something terribly wrong with my body. My doctors might NOT figure out what it was. I may have to resign myself to that. It would be hard to swallow (and sometimes I have a hard enough time swallowing!). But if this something, this disease or disorder is still present, it will be found out. I have to trust God and the good doctors I have.
Anyway, I hope I haven't offended anyone. AGAIN-- If you have lesions and symptoms -- get the right doctor to figure out why, and SOON. I can't stress that emphatically enough.
I've been flopping on the poop deck of this USS Flounder along with the rest of you for a looooong time. I need some peace. So, I am making it.
Peace out,
Zilla*
The thing that is happening with me, lately, however, is that I'm getting some peace about the whole diagnosis journey.
I am having very strong parasthesias, every day in lots of new ways. I have episodes, although quite mild, of vertigo that do not affect my driving safety or make me feel ill. I have pain in my legs that sometimes makes it difficult for me to fall asleep. As some of you may remember, last year I had a few episodes of severe weakness in my legs that made it impossible for me to walk for a few days here and there. I haven't had that problem since October.
I have normal test results in just about everything that matters. I am feeling stronger and hopeful. I KNOW something either is or absolutely WAS terribly wrong with me. I have no objective evidence for a doctor to diagnose me right now. So, I have decided to relax about a diagnosis until my body screams that I need an answer.
I have seen some very good doctors that have given me what I think are incredible work-ups. My current neuro will follow up with me in June. That's fine with me. If everything is normal then, I'll wait it out. I'm putting my trust in him. He's not lazy; he's not dismissive. He's frustrated, like I am.
I am not saying there is nothing wrong with me. Nor am I saying that anyone WITH objective evidence shouldn't assertively pursue a diagnosis with a great doctor (maybe better than the one they've got). If you have lesions -- get a good doc to find out why! Pronto! As we know with MS, time is critical. (Tammy -- get 'er done!)
MOM -- I'm not saying you should relax and sit back, either. I'm sorry, but I don't recall your story and test results.
All I'm saying is I have probably not enjoyed my life as fully as I could have lately because I am sweating this diagnosis so crazily. It's hard not to do. Every twitch, every tingle, some weakness, the cramping....it's all difficult to ignore. But I want to get back to getting health under control: losing some weight I've packed on, sitting at this computer googling symptoms, instead of getting out in the fresh air. Looking for the sun.
It's hard. I know. There IS or was something terribly wrong with my body. My doctors might NOT figure out what it was. I may have to resign myself to that. It would be hard to swallow (and sometimes I have a hard enough time swallowing!). But if this something, this disease or disorder is still present, it will be found out. I have to trust God and the good doctors I have.
Anyway, I hope I haven't offended anyone. AGAIN-- If you have lesions and symptoms -- get the right doctor to figure out why, and SOON. I can't stress that emphatically enough.
I've been flopping on the poop deck of this USS Flounder along with the rest of you for a looooong time. I need some peace. So, I am making it.
Peace out,
Zilla*
Needing to know what is wrong with you is not only okay, but it is necessary, yes? You have a family, you have a life to live, you have things to do.
I keep looking for answers because I don’t want my future to be like my present.
Going to different specialists is an arduous task, but if it helps lead to an answer then it needs to be done. It does help to eliminate possibilities and lead to asking more specific questions.
I have been looking for answers for a long time, but only seeing various specialists for less than a year. Had someone told me what I was headed into I would not have believed it.
As I was typing this I was sidetracked by the phone and many have posted great advice.
Hang in there!
((BIG HUGS))
Wanna
I keep looking for answers because I don’t want my future to be like my present.
Going to different specialists is an arduous task, but if it helps lead to an answer then it needs to be done. It does help to eliminate possibilities and lead to asking more specific questions.
I have been looking for answers for a long time, but only seeing various specialists for less than a year. Had someone told me what I was headed into I would not have believed it.
As I was typing this I was sidetracked by the phone and many have posted great advice.
Hang in there!
((BIG HUGS))
Wanna
Bravo Tammy, Bravo!!!!! You are absolutely right and I guess it never occured to me the fact that if this were my child, family member, animal etc. I would not give up.
Why is it so easy for women to put their health on the back burner and put everyone elses needs above their own. I would never question spending $10,000 we don't have on testing if this were my child or husband and yet I feel like a financial burden when I need to spend money on another doctor forme or more tests.
We do deserve answers and it is not a want BUt a need just like you have said!!
Love and Hugs to all - we will get through this together!! I have your backs ladies!!
Kristin
Why is it so easy for women to put their health on the back burner and put everyone elses needs above their own. I would never question spending $10,000 we don't have on testing if this were my child or husband and yet I feel like a financial burden when I need to spend money on another doctor forme or more tests.
We do deserve answers and it is not a want BUt a need just like you have said!!
Love and Hugs to all - we will get through this together!! I have your backs ladies!!
Kristin
It's OK to ramble, I've done that several times myself.....Don't you worry about that! :)
You hit the nail on the head with the emotional relief feeling....
I remember last December when I was going to my GP to get the results of the first MRI I ever had in my life. I had the conversation that we were 'supposed' to have all ready in my head. I seriously thought that my MRI would be 'normal'.....
When he told me that I had several lesions showing up and I would have to go through several months of more testing, I was shocked. When I left, needless to say, I was very upset and crying....I also had a huge feeling of "relief" because it was not until that day that I finally believed that I was NOT crazy....(a little nutty maybe, but not crazy..hehe)
And neither are you!
Please try your best and keep your chin up.....Together, we will get through this and find the answers we both deserve...
There's one 'trick' I always play on myself on those days that I just want to throw in the towel.....I ask myself, "If this was one of my children, or my Mom, or even my dog, would I give up on THEM?" Hell no!
So, don't I deserve the same?? Yes, and so does every other human being on this planet.
Tammy
You hit the nail on the head with the emotional relief feeling....
I remember last December when I was going to my GP to get the results of the first MRI I ever had in my life. I had the conversation that we were 'supposed' to have all ready in my head. I seriously thought that my MRI would be 'normal'.....
When he told me that I had several lesions showing up and I would have to go through several months of more testing, I was shocked. When I left, needless to say, I was very upset and crying....I also had a huge feeling of "relief" because it was not until that day that I finally believed that I was NOT crazy....(a little nutty maybe, but not crazy..hehe)
And neither are you!
Please try your best and keep your chin up.....Together, we will get through this and find the answers we both deserve...
There's one 'trick' I always play on myself on those days that I just want to throw in the towel.....I ask myself, "If this was one of my children, or my Mom, or even my dog, would I give up on THEM?" Hell no!
So, don't I deserve the same?? Yes, and so does every other human being on this planet.
Tammy
It sounds as if you and I feel the same way about all of this, and you said it so eloquently. I also feel as if I need to know, it's not just a want.
Something that I just realized, which the doctors don't seem to get (although they should), by naming our illness, not only do we get emotional relief, but physical relief is possible too. By naming the illness, we can get TREATMENT FOR THE DISEASE. I'm writing this in upper case because I think that is so, so important. That is where the need overrides the want as far as I'm concerned.
All of this makes me think that perhaps they really don't think there is anything seriously wrong, otherwise why would they suggest we quit looking?
Oops! I'm rambling again.
Thanks for sharing your feelings. Good luck with the MS specialist.
Something that I just realized, which the doctors don't seem to get (although they should), by naming our illness, not only do we get emotional relief, but physical relief is possible too. By naming the illness, we can get TREATMENT FOR THE DISEASE. I'm writing this in upper case because I think that is so, so important. That is where the need overrides the want as far as I'm concerned.
All of this makes me think that perhaps they really don't think there is anything seriously wrong, otherwise why would they suggest we quit looking?
Oops! I'm rambling again.
Thanks for sharing your feelings. Good luck with the MS specialist.
I will never give up or surrender the need to find out what is wrong with me. I will see a MS specialist on May 15th and this time the ball will be in my court. She will not be getting any previous medical records and the only thing I am taking with me is the MRI's and latest test results.
The only thing I told the scheduling department was that I had an MRI brain scan come back showing multiple lesions on my brain and the radiologists report read "the findings are consistent with multiple sclerosis".
I was dx'd with MS in 2002 and the dx was taken away in 2004. I have been ill since 1996. From now on I plan to be in complete control of my health and will get answers one way or another.
Please don't give up as you deserve an answer!
Hugs,
challengecase
The only thing I told the scheduling department was that I had an MRI brain scan come back showing multiple lesions on my brain and the radiologists report read "the findings are consistent with multiple sclerosis".
I was dx'd with MS in 2002 and the dx was taken away in 2004. I have been ill since 1996. From now on I plan to be in complete control of my health and will get answers one way or another.
Please don't give up as you deserve an answer!
Hugs,
challengecase
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