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ME doctors in California for possible comorbidity with EDS

Discussion in 'ME/CFS Doctors' started by youngscum, Oct 5, 2018.

  1. youngscum

    youngscum Established Member

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    Hi,
    I'm a first time poster from the UK and have had ME for a long time, so just to say: hello! hope yr all doing as well as can be expected, etc.

    Anyway, the reason for calling in is i have a good friend in LA who has Ehlers Danlos Syndrome, type 3 i think (dunno if it's relevant tbh) and is also having problems with overlapping symptoms, mainly chronic fatigue, headaches, pain and insomnia (tho this predates the others), which have a post exertional element.

    She was wondering about whether there are any good Drs in the LA area that she might be able to go to, to see if it's possible whether this is a co-morbid case of ME starting (god forbid *sign of cross*) or whether it can be explained as part of her current diagnosis. Can anyone recommend anybody who's good, especially on this kind of overlap if possible, but just in general if not?
     
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  2. WillowJ

    WillowJ Senior Member (Voting Rights)

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    Type III is vascular? In my experience, there are more doctors seeing this type than other types. There are known genes and known obvious risks.
    There’s a new classification scheme as of last year.

    General recommendation is to join one’s local chapter of the national foundation and ask in the group. (My state chapter excludes hypermobility type, so I look in the next nearest state, but someone with a vascular type shouldn’t have this issue.)

    Some links:
    https://rarediseases.info.nih.gov/diseases/6322/ehlers-danlos-syndromes

    https://rarediseases.org/organizations/the-ehlers-danlos-society/

    Though maybe some CA people here have a more specific recommendation.

    I am not sure that most EDS doctors are aware of ME as a disease by itself, although they are aware of CFS as a diagnosis people get before getting an EDS diagnosis.
     
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  3. WillowJ

    WillowJ Senior Member (Voting Rights)

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  4. youngscum

    youngscum Established Member

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    Hi, thank you for yr response and the welcome. She has hypermobility, so I may be wrong in using an old classification, I probably am (me being wrong is not uncommon). But what we were looking for was an ME doctor rather than an EDS one, she already has a specialist there, it was more a case of getting someone who knew what they were doing to talk to with regards to the ME symptoms, cos of what you were saying there about EDS people not really being experts in this field.
     
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  5. WillowJ

    WillowJ Senior Member (Voting Rights)

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  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Hi @youngscum,

    EDS 3 is a term now often used for people who are hypermobile. However, we do not have any genetic information on most people with hypermobility and I personally think it is unhelpful to call this EDS at all. EDS covers a group of rare diseases (maybe one person in a thousand or less). Hypermobility is common and not an illness in itself. Lots of hypermobile people are perfectly healthy. I am not even convinced that hypermobility causes much in the way of symptoms beyond injuries except in extreme cases. (I helped to run one of the first hypermobility clinics in the UK at Guys Hospital in the 1970s. Nobody had fatigue or headache.)

    So it sounds as if your friend has been told they are hypermobile. It has become fashionable for doctors to use this as a diagnosis to explain symptoms but there is no real diagnostic test. Some people are more mobile than others, that's all, and there is no cut off between normal and very mobile.

    If someone has fatigue and pain then there is clearly a possibility of ME/CFS. It is said that people with ME/CFS are more likely to be hypermobile. That may be true but pretty much all the research I have seen on that is poor quality. So the question is just whether the person has ME/CFS.

    California is one of the most active places for ME/CFS research and there are doctors there with a lot of experience. But it is worth being aware that a 'ME doctors' in the USA are private practitioners who recommend all sorts of treatments that as far as we know are of no value. Probably the main value in consulting a doctor if there is a question of ME/CFS is getting the appropriate tests done to make sure it is not something else. We have no specific treatments for ME/CFS at present.
     
    Last edited: Oct 6, 2018
  7. youngscum

    youngscum Established Member

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    Yes, she knows that this is quite an individual thing regarding hypermobility, the main thing is to get to the bottom of the PEM type problems as they are getting worse and EDS Drs aren't really in the way of doing much about it. Whether that means treatment (which will be her own choice, tho i appreciate there are things to consider), just decent management advice, which she's unlikely to get at the moment from current Drs, or an alternative diagnosis if appropriate, which to be honest i'd feel a lot better about cos i've been sick for 20 years and would't wish this on my worst enemy (well maybe the odd knight of the realm :)), the important thing is to be on top of it as much as possible.

    Thanks for your recommendations! I'll pass them on so that she can look into them, but will bear it in mind that others may have stuff to say and will look in again. Thank you both for yr help.
     
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  8. Skycloud

    Skycloud Senior Member (Voting Rights)

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    Just for clarification, particularly as they've changed names with the new classification system - hypermobility EDS type 3 is now called hEDS. It has no genetic markers and isn't vascular EDS (vEDS) which does have genetic markers and is something different.
     
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  9. WillowJ

    WillowJ Senior Member (Voting Rights)

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    I can’t say I exactly recommend either clinic, as I haven’t been to one and just mainly verified my diagnosis at the other.

    But in many states, including mine, there’s not even one place where one could check the diagnosis or enroll in clinical trials. CA has more than one.

    I got mixed up reading collagen types and thought that was the previous diagnosis system and said the EDS type incorrectly, but @Skycloud said it the right way for thread readers.
     
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  10. youngscum

    youngscum Established Member

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    I found a list of all the state's clinics online, as well as handing those particular ones over, and she's going to look into things from there. Thank you for yr input, it is something at least. It seems a terrible business asking if one awful diagnosis may not be enough, cos there might be another one to come as well, but it's important to know i spose. *sigh*
     
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