Hello everyone. This is my first post here, so I was unsure whether to turn to this forum or someplace else, but please redirect me if that's the case.
Background:
I'm currently in the middle of being diagnosed for CFS/ME by a doctor with no experience with this disease, and I'm in need of help.There're no specialists in my area, I was dismissed by the only neurologists available because they're already running low on staff with too many patients and my case wasn't considered severe enough last year (I was moderately impaired then, but I've been deteriorating since) and as I'm 20 y.o with very limited medical knowledge fighting for my own case, I'm not really taken seriously. My parents try to help me when they can, but for various reasons I'm too tired to go into, they only add to more confusion and misunderstandings in this process, through no fault of their own. As a result, I have to do this alone.
For more reasons it'd take me more coherency than this to explain, I'm also currently stuck in a rut where I can't really trust my doc to be the one more alert to symptom changes and tests that need to be done, nor can I go to anybody else to do the job, at least for the time being. So I'm with her until I have a set diagnosis. Unfortunately, I need to be the one pushing for the tests I want done and argue why. I've seen lists of suggested tests for the diagnosing of CFS both on this forum and elsewhere and I've tried to bring it up with her, but she dismisses quite a few of them as irrelevant even when I feel that they should be.
(For example, I had to push to get an MRI of my spine done to check for a herniated disc - I've had sciatica for a year, but she dismissed it as one of the myriad symptoms in CFS/ME - and possible MS (I argued that you can't just go by a brain MRI alone), even though she initially thought it was unnecessary, the same goes for a remittal to an eye doctor when I've mentioned multiple times that I've had non-stop visual disturbances for 2+ years now.)
To her credit she actually listens if I'm persuasive enough with my arguments, as in the example mentioned above, and she did take the initiative to get a quite extensive blood test done, although I've no idea what I was tested for and what the results were, other than the fact that I have iron deficiency and lactose intolerance. She also mentioned wanting to get a spinal tap done, but as we're currently renovating the house I requested to wait until I at least have a proper bed to rest on to avoid an extreme crash afterwards.
But somehow I still feel like we're missing out on a lot more than I know about in this diagnosis process due to my lacking knowledge and her lacking awareness. I try to do research as best as I can on my own, but it's frustrating to start from scratch with my fatigue, fog and impaired memory to boot. Not to mention that since I remained in denial about having any disease at all the first three and a half years of my gradual deterioration, I feel like I still remain a lot in the dark about a lot of my own symptoms. (I only started pursuing medical aid last year when I reached a stage where I became permanently house-bound.) With the renovation going on I also don't have the proper environment to properly gather material and "study" for this.
For those of you too tired to read my entire wall of text:
One aspect I really need help with right now, though, is the cardiovascular/cardiorespiratory part of this. I've read in several places that such conditions should be further investigated as to avoid a misdiagnosis of CFS/ME, or even as a stand-alone issue to be diagnosed even within the frame of the disease. I myself have had chest pain and heart palpitations even before the onset of my disease, but this has always been fairly normal in my family and it was never particularly serious or frequent. Now, however, it's gotten to the point that I have trouble sleeping and I sometimes feel afraid of breathing too deeply or standing up too quickly lest the palpitations become too fast/painful.
I think my doc will grant me a remittal to a cardiologist if I mention this, so I thought I might as well push for a further investigation of any possible differential diagnoses for CFS/ME at the same time within the same field. I also read on HFME that a 'complete cardiac investigation' should be done before trying for a tilt test (which I'm considering asking for to possibly diagnose OI), but I'm not sure what that entails. So could anybody please help me answer the following:
1. What standard cardiac tests should be done in the diagnosis process for CFS/ME, and more importantly, why? (Since my doc won't listen otherwise if I can't argue for it)
2. What a 'complete cardiac investigation' means in the context mentioned at HFME where tilt tests are concerned?
3. If you have any other suggestions regarding things to check for/tests to do that I can ask of my doc since this also increases the possibility of the remittal being accepted?
Also, if anybody could give me general suggestions about how to go about with this process at large, I'd be really, really grateful. I feel so frustrated with how haphazard it is... I read articles here and there and have a long list of saved links to useful resources of information for possible differential diagnoses and whatnot, but I'm too foggy and fatigued to remember much of them, even ones I've read over and over again. I've browsed this forum quite a bit, even printed out some threads discussing the diagnosis process, but often I'm so confused with what the different terms mean and what the tests are for and how that could be relevant in my case so I can ask my doctor to do them, I only become increasingly overwhelmed and near crashing after going through them. (I'm near crashing just from trying to be coherent enough to write this alone.)
I'm sorry for this wall of text and/or if I'm asking something obvious or that I could find by myself... sometimes having this fog just makes me feel so stupid. I feel like there should be an easier way to put my thoughts into words without going into excessive babbling, or some way to solve my problems and gather the information necessary without troubling others, but I really have no idea how. I can't make sense of anything, and I'm so afraid of being misunderstood about the little things I can make sense of. Please, help.
Background:
I'm currently in the middle of being diagnosed for CFS/ME by a doctor with no experience with this disease, and I'm in need of help.There're no specialists in my area, I was dismissed by the only neurologists available because they're already running low on staff with too many patients and my case wasn't considered severe enough last year (I was moderately impaired then, but I've been deteriorating since) and as I'm 20 y.o with very limited medical knowledge fighting for my own case, I'm not really taken seriously. My parents try to help me when they can, but for various reasons I'm too tired to go into, they only add to more confusion and misunderstandings in this process, through no fault of their own. As a result, I have to do this alone.
For more reasons it'd take me more coherency than this to explain, I'm also currently stuck in a rut where I can't really trust my doc to be the one more alert to symptom changes and tests that need to be done, nor can I go to anybody else to do the job, at least for the time being. So I'm with her until I have a set diagnosis. Unfortunately, I need to be the one pushing for the tests I want done and argue why. I've seen lists of suggested tests for the diagnosing of CFS both on this forum and elsewhere and I've tried to bring it up with her, but she dismisses quite a few of them as irrelevant even when I feel that they should be.
(For example, I had to push to get an MRI of my spine done to check for a herniated disc - I've had sciatica for a year, but she dismissed it as one of the myriad symptoms in CFS/ME - and possible MS (I argued that you can't just go by a brain MRI alone), even though she initially thought it was unnecessary, the same goes for a remittal to an eye doctor when I've mentioned multiple times that I've had non-stop visual disturbances for 2+ years now.)
To her credit she actually listens if I'm persuasive enough with my arguments, as in the example mentioned above, and she did take the initiative to get a quite extensive blood test done, although I've no idea what I was tested for and what the results were, other than the fact that I have iron deficiency and lactose intolerance. She also mentioned wanting to get a spinal tap done, but as we're currently renovating the house I requested to wait until I at least have a proper bed to rest on to avoid an extreme crash afterwards.
But somehow I still feel like we're missing out on a lot more than I know about in this diagnosis process due to my lacking knowledge and her lacking awareness. I try to do research as best as I can on my own, but it's frustrating to start from scratch with my fatigue, fog and impaired memory to boot. Not to mention that since I remained in denial about having any disease at all the first three and a half years of my gradual deterioration, I feel like I still remain a lot in the dark about a lot of my own symptoms. (I only started pursuing medical aid last year when I reached a stage where I became permanently house-bound.) With the renovation going on I also don't have the proper environment to properly gather material and "study" for this.
For those of you too tired to read my entire wall of text:
One aspect I really need help with right now, though, is the cardiovascular/cardiorespiratory part of this. I've read in several places that such conditions should be further investigated as to avoid a misdiagnosis of CFS/ME, or even as a stand-alone issue to be diagnosed even within the frame of the disease. I myself have had chest pain and heart palpitations even before the onset of my disease, but this has always been fairly normal in my family and it was never particularly serious or frequent. Now, however, it's gotten to the point that I have trouble sleeping and I sometimes feel afraid of breathing too deeply or standing up too quickly lest the palpitations become too fast/painful.
I think my doc will grant me a remittal to a cardiologist if I mention this, so I thought I might as well push for a further investigation of any possible differential diagnoses for CFS/ME at the same time within the same field. I also read on HFME that a 'complete cardiac investigation' should be done before trying for a tilt test (which I'm considering asking for to possibly diagnose OI), but I'm not sure what that entails. So could anybody please help me answer the following:
1. What standard cardiac tests should be done in the diagnosis process for CFS/ME, and more importantly, why? (Since my doc won't listen otherwise if I can't argue for it)
2. What a 'complete cardiac investigation' means in the context mentioned at HFME where tilt tests are concerned?
3. If you have any other suggestions regarding things to check for/tests to do that I can ask of my doc since this also increases the possibility of the remittal being accepted?
Also, if anybody could give me general suggestions about how to go about with this process at large, I'd be really, really grateful. I feel so frustrated with how haphazard it is... I read articles here and there and have a long list of saved links to useful resources of information for possible differential diagnoses and whatnot, but I'm too foggy and fatigued to remember much of them, even ones I've read over and over again. I've browsed this forum quite a bit, even printed out some threads discussing the diagnosis process, but often I'm so confused with what the different terms mean and what the tests are for and how that could be relevant in my case so I can ask my doctor to do them, I only become increasingly overwhelmed and near crashing after going through them. (I'm near crashing just from trying to be coherent enough to write this alone.)
I'm sorry for this wall of text and/or if I'm asking something obvious or that I could find by myself... sometimes having this fog just makes me feel so stupid. I feel like there should be an easier way to put my thoughts into words without going into excessive babbling, or some way to solve my problems and gather the information necessary without troubling others, but I really have no idea how. I can't make sense of anything, and I'm so afraid of being misunderstood about the little things I can make sense of. Please, help.
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