Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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Help with my differential diagnosis?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by windscene, Nov 11, 2013.

  1. windscene


    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.

    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.
    Last edited: Nov 11, 2013
  2. justy

    justy Donate Advocate Demonstrate

    Hi Windscene, I hear how anxious and desperate you are with all this. It IS all very confusing and hard when ill to forge your own path.

    First things first - many here would be happy to help with pointing you toward differential diagnoses and the work ups for them, but we need a complete symptom list, could you add it to the thread?

    Secondly I suggest you ask your Doctor for a copy of ALL blood tests and other tests done - MRI report etc, with lab values (sorry cant retrieve the real word, values will have to do) So that we can have a look and see if they point up anything.

    I strongly suggest no more pushing and complete rest for now.

    If all your symptoms point to an M.E/CFS diagnoses I suggest an M.E/CFS doctor - anything else is going to be a waste of time.

    If you can avoid a diagnosis of M.E/CFS then I would - many many people are misdiagnosed, those that aren't are left to rot with minimal help and care, unless they are under a CFS speiclaist.

    Knowing whereabouts you are might help with Dr suggestions etc.

    Take care,
    Justy x
    windscene, Beyond and helen1 like this.
  3. windscene


    Thank you so much. For the time being I can't provide a complete symptom list nor a copy of all the tests... I've so many symptoms I can't remember them all, but I've a collection of "symptom diaries" of sorts that I can't really reach right now due to the renovation of my house. I'll go through them and summarize them in this thread later when I've access to them again, though.

    As for the test list, I've asked my doc for it previously, but she says she's unwilling to give it to me until we've done all tests she deems necessary to set a diagnosis, as to provide a better overview. Right now I've still got a spinal tap and eye doctor appointment left, which is why I'm thinking of pushing for that cardiologist remittal, too - I get the feeling she just wants to set that CFS/ME diagnosis and be done with me, so if I don't push for it now I might lose the chance later once she has made up her mind.

    I'm in Malmö, southern Sweden, and there are no ME/CFS doctors in my area, at least that I could find. I know there's one specialist clinic near Gothenburg, but it rarely admits applications from other counties. There's also a temporary specialist project unit up in Stockholm, but they also only admit patients from those of Stockholm county. I'm twenty minutes away from Copenhagen by train, though, but I don't know if they'll accept patients that aren't Danish citizens.
  4. Helen

    Helen Senior Member

    Hi @windscene ,

    As I live in Sweden I got a lot of thoughts reading your post. There is a private ME-clinic, Gotahälsan in Mjölby. You have to wait some months for an appoinment so I think it is good that your doctor make all kinds of investigations before, if you would like to go there.

    As I don´t know very much about your symptoms I can only guess about proper labtests a.o. When they´ll make the lumbar punction, ask for borrelia/Lyme tests and for a vitamin B12 value. Most ME/CFS people do have genetic defects in SNP´s that explain B12 and folate deficiences . If possible, order a test from 23andme. You will see that it is very useful.

    Did you contact the organisation for ME/CFS patients? They have a lot of good information on their homepage. See the videos.

    About your heartproblems. A potassium deficiency is common among ME/CFS people. According to a cardiologist in Göteborg, the value for potassium should be in the upper normal reference nterval, or a bit higher. It is not good or normal to be in the lower reference interval.

    Check that homocystein and/or MMA were taken, and even a S-Kobalamin test. These are B12 tests. Not always positive even if you have a deficiency, but at least you should be tested. You have a legal right to get your lab test results, but maybe you don´t want to provoke your doctor by fighting for them. If she is actively working for a diagnose, maybe she should be left doing that for a while

    Just some thoughts. All the best to you
    Last edited: Nov 21, 2013
    Crux and Valentijn like this.

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