Aa
Help! Need some ideas
Hi all,
I am feeling rather desparate and really at a loss of what I can do next. I am back from my weekend away - camping by Mt. Baker and boy was it cold! After calming down from my latest disaster of a doctor appointment I realized I have some to the end of my options.
I changed GP's in Nov last year and was referred to a neurologist. So now since I only have small hyperintensities in my white matter they are both convinced that I don't have MS. unfortunately that's where it all stops - no investigations as to other options.
My GP says she'll send me to a pain management clinic. I told her I already know how to manage the pain - i get up every day and force myself to work, play with my kids... because what other choice do I have. I want an answer as to what is causing my problems. I just don't know how to get this.
So I was ready to just give up and then bang - I end up with the horrible pain under my right rib again. It is so bad I can barely breathe and am on the fence about going to the ER. My dh thinks this is completely nuts that they aren't doing more tests.
So that was the background to my question: does anyone have any brilliant ideas of what to do or how to get some help? The irony of this whole thing is that I work in health care and am an advocate and yet can't seem to be able to do this for myself. I feel like the very system I work for has failed me and I am being punished because I still am managing to work and function. Thanks, Anna
I am feeling rather desparate and really at a loss of what I can do next. I am back from my weekend away - camping by Mt. Baker and boy was it cold! After calming down from my latest disaster of a doctor appointment I realized I have some to the end of my options.
I changed GP's in Nov last year and was referred to a neurologist. So now since I only have small hyperintensities in my white matter they are both convinced that I don't have MS. unfortunately that's where it all stops - no investigations as to other options.
My GP says she'll send me to a pain management clinic. I told her I already know how to manage the pain - i get up every day and force myself to work, play with my kids... because what other choice do I have. I want an answer as to what is causing my problems. I just don't know how to get this.
So I was ready to just give up and then bang - I end up with the horrible pain under my right rib again. It is so bad I can barely breathe and am on the fence about going to the ER. My dh thinks this is completely nuts that they aren't doing more tests.
So that was the background to my question: does anyone have any brilliant ideas of what to do or how to get some help? The irony of this whole thing is that I work in health care and am an advocate and yet can't seem to be able to do this for myself. I feel like the very system I work for has failed me and I am being punished because I still am managing to work and function. Thanks, Anna
Wow you are all fast. Thanks for the ideas, support and hugs. I know I need to do something but I was so certain that I had done well for myself - leaving my past GP who wouldn't send me for anymore tests and finding a new one and then getting a neuro appt and MRI all within 2 months (almost unheard of in Canada). So I guess I'm feeling like a failure.
I did do a time line - neither my GP nor neuro has looked at it. In fact my neuro didn't even look at the mri slides - he just took the radiologists report. I took my DH along to both my neuro follow up and my GP and after arguing neuro ordered SSEP and VEP and GP said she would send me to the ms clinic for a second opinion.
Now because nothing showed up on those tests she is convinced it is fibromyalgia (rheumy #2 said it was NOT fibro, lupus, rhumatoid...), or myofacial pain syndrome, depression or some type of pain I must learn to live with and she will only prescribe amitriptyline. I have no idea what it could be because all I ever find out is what it isn't.
It was my new GP that thought ms when I told her my medical history and symptoms during my physical is Jan and then I started to learn about it and it does fit many of my symptoms, but so does Autonomic Neuropathy but the useless neuro is not going to investigate further and stated he does not think there is need for a lumbar puncture. I am not even sure what specialist I should see now and if I ask to see another will I end up back to where I was before with a doc mad that I need to see so many specialists and refusing to send me.
I asked my GP that could we at least MRI my spine (they only did my neck and head) and she reluctantly agreed but who knows how long that will take. I am just so tired and feel like I am right back to square one.
Words can not express the respect I have for those of you who have fought this battle for answers. I am so glad I found this place! Thanks again everyone, Anna
I did do a time line - neither my GP nor neuro has looked at it. In fact my neuro didn't even look at the mri slides - he just took the radiologists report. I took my DH along to both my neuro follow up and my GP and after arguing neuro ordered SSEP and VEP and GP said she would send me to the ms clinic for a second opinion.
Now because nothing showed up on those tests she is convinced it is fibromyalgia (rheumy #2 said it was NOT fibro, lupus, rhumatoid...), or myofacial pain syndrome, depression or some type of pain I must learn to live with and she will only prescribe amitriptyline. I have no idea what it could be because all I ever find out is what it isn't.
It was my new GP that thought ms when I told her my medical history and symptoms during my physical is Jan and then I started to learn about it and it does fit many of my symptoms, but so does Autonomic Neuropathy but the useless neuro is not going to investigate further and stated he does not think there is need for a lumbar puncture. I am not even sure what specialist I should see now and if I ask to see another will I end up back to where I was before with a doc mad that I need to see so many specialists and refusing to send me.
I asked my GP that could we at least MRI my spine (they only did my neck and head) and she reluctantly agreed but who knows how long that will take. I am just so tired and feel like I am right back to square one.
Words can not express the respect I have for those of you who have fought this battle for answers. I am so glad I found this place! Thanks again everyone, Anna
Well for starters I have to say that we are still at the lake here in Alberta and it is FREEZING!! I think camping in the month of May is something we all need to rethink or just get used to the cold and well we had snow last weekend too!! haha
Now, since you said " So now since I only have small hyperintensities in my white matter they are both convinced that I don't have MS" I say you have to find someone else to help you get a lumbar puncture at the very least! My first MRI report from 1993 said exactly the same thing, "small hyperintensities in the white matter" but it went on to say that they are consistent with a diagnosis of MS. I then had a lumbar puncture and was diagnosed without a doubt due to the banding in my spinal fluid.
That said my dear, you are going to have to work harder at being your own advocate. If it were me I would make another appointment with your neurologist and find out why a Lumbar Puncture is not being done? You are obviously still having symptoms and you want to know what it is and it is the neurologists job to find out! I went through my own little hell while trying to get DMD's and was constantly being told that my disease is in remission...bull pucky as it turned out!
Is your neurologist an MS Specialist? If not, please ask your gp to refer you to an MS Specialist and take a copy of the last MRI to an appointment for him to see. They tend to see a lot more on MRI than a regular neuro when it comes to MS. If your gp isn't open to sending you to an MS clinic, then try to find a new gp. I know it is hard and a lot of work when you are not feeling well honey but they are not going to come looking for you...you have to get out there on your own and get it done. To be honest with you, I don't understand how a gp could agree or disagree as to whether an MRI shows MS lesions or not...they don't as a rule have the ability to read an MRI the way an MS specialist can!
I don't know if I have helped any honey but please stick to your guns...we are here to back you up and I am sure you will get some other advice as well. It's easy to give up but the only one you are hurting is yourself as you well know working in the healthcare industry. By the way, have you done a timeline for yourself and the docs? It is an invaluable tool to keep track of all your symptoms for yourself and your doc...I always give my MS neuro an updated copy for my file and he really appreciates it. If you haven't done one, please look into it...it can be a HUGE help! Best of luck to you and keep your chin up...there is an answer out there somewhere and you will find it!
Lots of Hugs,
Rena
Now, since you said " So now since I only have small hyperintensities in my white matter they are both convinced that I don't have MS" I say you have to find someone else to help you get a lumbar puncture at the very least! My first MRI report from 1993 said exactly the same thing, "small hyperintensities in the white matter" but it went on to say that they are consistent with a diagnosis of MS. I then had a lumbar puncture and was diagnosed without a doubt due to the banding in my spinal fluid.
That said my dear, you are going to have to work harder at being your own advocate. If it were me I would make another appointment with your neurologist and find out why a Lumbar Puncture is not being done? You are obviously still having symptoms and you want to know what it is and it is the neurologists job to find out! I went through my own little hell while trying to get DMD's and was constantly being told that my disease is in remission...bull pucky as it turned out!
Is your neurologist an MS Specialist? If not, please ask your gp to refer you to an MS Specialist and take a copy of the last MRI to an appointment for him to see. They tend to see a lot more on MRI than a regular neuro when it comes to MS. If your gp isn't open to sending you to an MS clinic, then try to find a new gp. I know it is hard and a lot of work when you are not feeling well honey but they are not going to come looking for you...you have to get out there on your own and get it done. To be honest with you, I don't understand how a gp could agree or disagree as to whether an MRI shows MS lesions or not...they don't as a rule have the ability to read an MRI the way an MS specialist can!
I don't know if I have helped any honey but please stick to your guns...we are here to back you up and I am sure you will get some other advice as well. It's easy to give up but the only one you are hurting is yourself as you well know working in the healthcare industry. By the way, have you done a timeline for yourself and the docs? It is an invaluable tool to keep track of all your symptoms for yourself and your doc...I always give my MS neuro an updated copy for my file and he really appreciates it. If you haven't done one, please look into it...it can be a HUGE help! Best of luck to you and keep your chin up...there is an answer out there somewhere and you will find it!
Lots of Hugs,
Rena
Hi Anna
I'd go directly to the ER, no question!
At least you'll get looked at by someone new. Maybe this would help you find out the answers to your medical problems.
There would also be a record of this incidence instead of just your telling someone about it.
My 2 cents.
take care and let us know how you make out.
Mike
I'd go directly to the ER, no question!
At least you'll get looked at by someone new. Maybe this would help you find out the answers to your medical problems.
There would also be a record of this incidence instead of just your telling someone about it.
My 2 cents.
take care and let us know how you make out.
Mike
I have to say that I agree with you. Severe pain is not a normal state and merely "deciding that this is not MS" is not much of a diagnosis. I also think you are right. You likely ARE being ignored, because "after all, you are that bad off. You are still working. So what is the fuss about?
Several of us have noted that when it comes to neurological problems, those in the medical field seem to be treated very carelessly. There are probably a dozen explanations for this, but none of them hunt.
You may need to reach out to different doctors. My brain lesions are all very small. So small that my first neuro (may he rest in he ll) told me it was normal for two years. MS is NOT AN MRI DIAGNOSIS.
My vote is to go to the ER. Severe new pain needs to be checked out and every once in a while the ER doc sees the trees. You might also pick a brain there and ask about options for a second opinion.
I'm sorry you are so stymied. I've been there and only made progress when I sought out new medical minds - or sought out someone who actually "had" a medical mind.
Quix
Several of us have noted that when it comes to neurological problems, those in the medical field seem to be treated very carelessly. There are probably a dozen explanations for this, but none of them hunt.
You may need to reach out to different doctors. My brain lesions are all very small. So small that my first neuro (may he rest in he ll) told me it was normal for two years. MS is NOT AN MRI DIAGNOSIS.
My vote is to go to the ER. Severe new pain needs to be checked out and every once in a while the ER doc sees the trees. You might also pick a brain there and ask about options for a second opinion.
I'm sorry you are so stymied. I've been there and only made progress when I sought out new medical minds - or sought out someone who actually "had" a medical mind.
Quix
I am truly sorry about the rollercoaster you have been on. I like your comment about how you are managing your pain though as it sounds like you are a resiliant person and resiliance is what we need to get through all the medical uncertancies. Most of us would think someone in the healthcare field would be the best advocate for themselves, but I've learned after being in hospital for the past 5 weeks that this is not the case.
The only thing I could suggest if you aren't already been doing this is to take someone with you and do the advocating for you. Maybe it is your husband or if he is too close to the situation, taking your best friend. I had to end up doing this as I was being my own worst enemy when it came to dealing with these doctors. I learned that the doctor's want to hear from the patient on the most part, but if they have grown weary of hearing the same complaints from us, then they might listen when someone else states our case from a different perspective.
I only other thing that comes to mind is this book I read a few years ago. Have you ever heard of that book "How Doctor's Think"? That book helped me in dealing with doctor's in general. It was an eye-opening perspective.
Take care and I hope we hear from others experiences.
Julie
The only thing I could suggest if you aren't already been doing this is to take someone with you and do the advocating for you. Maybe it is your husband or if he is too close to the situation, taking your best friend. I had to end up doing this as I was being my own worst enemy when it came to dealing with these doctors. I learned that the doctor's want to hear from the patient on the most part, but if they have grown weary of hearing the same complaints from us, then they might listen when someone else states our case from a different perspective.
I only other thing that comes to mind is this book I read a few years ago. Have you ever heard of that book "How Doctor's Think"? That book helped me in dealing with doctor's in general. It was an eye-opening perspective.
Take care and I hope we hear from others experiences.
Julie
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