The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Angiogram: Helpful for diagnosing ME symptoms? Worth the risk?

Discussion in 'General Treatment' started by ScottTriGuy, Sep 7, 2017.

  1. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    The vascular surgeon wants to send me for an angiogram because he suspects there may be something dysfunctional in my neck because I feel dizzy and nauseous if I tilt my head back and look at the ceiling.

    I went to him because when I use my arms to pick something up I can experience immediate symptoms and need to be horizontal for at least 20 minutes so my body regulates itself.

    I'm very sensitive to motion-sickness - for example, on the weekend I looked through a pair of binoculars for perhaps 10 seconds and the unstable image caused a couple of hours of nausea. I can't read in a vehicle, vomit on planes, boats, etc, etc.

    So I don't think there is something wrong with my neck and I'm not sold on this invasive procedure with a 1 in 1,000 chance of a stroke.

    Has anyone found an angiogram helpful with ME symptoms? Harmful?

    Thanks.
     
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  2. Mij

    Mij Senior Member

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    I've been experiencing this for 26 years since my onset of M.E

    Actually, I experience everything you just wrote.
     
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  3. notmyself

    notmyself Senior Member

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    i had an angiogram done of the blood vessels in the head and neck, plus 2 doppler ultra sound investigations of all the possible blood vessels in the neck and brain..it ''helped ''me only to make the doctors and my family to further think is all in my head cause all of this test come back perfect..
     
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  4. Chris

    Chris Senior Member

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    I would be wary--sounds rather as if the surgeon would love to insert a stent somewhere in your circulation--a bit reminiscent of that now pretty well dismissed MS procedure. There are now imaging methods like the 64 slice CAT scan that can give good info on circulatory issues--though we don't have one here in Victoria, I think there should be some in Toronto. Why were you referred to a vascular surgeon?
     
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  5. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    I've had a 64 slice EBCT cardiac scan and also had an invasive angiogram done on my heart.



    Before you go down that route for dizzyness in such as complex illness as ME CFS I would consider the following also:

    1) Vertigous migraines. You can get these without headaches.
    2) Repeat viral vertigo events lasting months at a time.
    3) Medication hypersensitivity, including antivirals, antibiotics, antiretrovirals.
    4) Electrolytes.
    5) Chronic allergies. You can have allergies and not become super ill, 'just' experience symptoms such as dizziness, headache, more mucus production, stomach pain etc. If possible test your total IgE.
    6) Dysautonomia can cause chronic vertigo/dizzynes.
    7) Peripheral neuropathy.
    8) 'Top Shelf Vertigo'. Not looking at naughty magazines in newsagents, but looking upward.
     
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  6. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    He did try to send me for a CT scan but I was refused because the technician didn't feel comfortable doing the CT in one of the positions the doc wanted.

    I have thoracic outlet syndrome, ergo the vascular physician referral.
     
  7. Rlman

    Rlman Senior Member

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    i know there are MRA (Magnetic Resonance Angiogram) tests of head and neck (MRI of blood vessels). i had it done for head.
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    @ScottTriGuy When you said you experience immediate symptoms when you pick up something w/your arms, do you mean when you bend to pick up something from the floor from standing, or do you mean literally anything (like if you were seated and picked up something from the table or your desk)?

    My body cannot regulate itself if I bend from standing to pick up something from the ground and I assume in my case it is from dysautonomia and POTS. I can pick things up while seated with no problems.

    I do not have motion sickness and can read in the car or use binoculars. But if I look up to the ceiling or raise my arms over my head, it can often still trigger the reaction. No nausea in my case but dizziness, tachycardia, shortness of breath, etc.

    I have never had an angiogram but was curious if you ended up having one, Scott. I apologize if you posted about it in another thread and I am confused!
     
  9. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    The most intense (as in, needing to be horizontal for at least 20 minutes to allow my blood pressure to normalize) symptoms happened when I picked up my small, light suitcase (only had shorts and t-shirts for beach) and tossed into the back of the Uber for ride to the airport. That brief bending and lifting (and twisting?) caused the reaction: queasy, feeling very unwell, strong urge to get horizontal.

    Even though I tried to get as horizontal as possible in the backseat for the 15 minute ride, I still spent another 15 minutes lying on the floor in the middle of the airport while also telling airport staff I didn't need paramedics. The airport workers were strongly encouraging me not to get on the plane: "If you pass out on the plane, they'll have to divert to the nearest airport." By the time the plane took off a couple of hours later I was fine.

    (Although I did pass out / vomit on the return flight just before landing and was taken off the plane by paramedics - once in the airport I was a bit more lucid on the horizontal gurney and declined to go to the emergency room so the paramedics left, but the airport workers wanted me to go through customs so they had me vertical in a wheelchair and that verticalness caused me to faint again - so back come the paramedics and load me into the ambulance - but all that was my motion sickness, no doubt exacerbated by ME, but not a lifting thing.)

    The other time was helping my dog into the backseat of the car - same thing: brief bending and lifting (and twisting?). I then spent about 30 minutes lying on the vet's waiting room floor before I was well enough to stand and drive.

    I did not go for the angiogram: too much risk for potential benefit. I couldn't find any reports of ME folks having an angiogram of their neck that proved helpful.

    My doc's referral to the POTS clinic was rejected by the doctor because he "doesn't see patients with chronic fatigue syndrome". Smells like evidence of institutional bias and I'm considering launching a human rights complaint on behalf of Canadians with ME, just waiting for my doc to forward the rejection letter to me.
     
  10. Learner1

    Learner1 Forum Support Assistant

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    @ScottTriGuy I've found most doctors won't test people with ME/CFS. But they do treat people with other problems. So, do you have any of those? (Most of us do, if our doctors bother to look.)

    For POTS, do your pulse or blood pressure do odd things when you stand for a while or sit or bend over and stand up? The Dysautonomia International site may have some clues about how you describe your symptoms so your GP can document them for the referral.

    The Cell Trend test identified adrenergic antibodies in me that have been linked in studies to POTS. That result plus the studies below are credible evidence for seeing a POTS clinic. Here's the link to the test:

    http://www.celltrend.de/cfs-diagnostics.html

    My blood was drawn in California and shipped to Germany. I had to pay out of pocket, but the result was worth it in being taken seriously.

    Here are the studies:

    https://www.ncbi.nlm.nih.gov/m/pubmed/24572257/

    https://academic.oup.com/europace/article/19/7/1211/2952372

    Good luck!
     
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  11. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Thanks @Learner1 That's very helpful info - I don't mind paying out of pocket for testing especially if the results can lead to treatment / improved quality of life.

    My functional medicine doc will be supportive of testing - he had sent my blood to Armin Labs in Germany for coxsackie.
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    Thank you, Scott, for such a detailed reply and your overall description of your experiences sound different than mine, although there are some similarities. Can you remind me, were you the one who posted several months ago re: having thoracic outlet syndrome (TOS) or was that someone else? If it was you, did you end up being treated for that and does it relate to this other problem?

    Thanks and I was just curious. I have had times along this illness where some tests were recommended for me (especially by my cardio) that I declined b/c I felt they were unnecessary and too dangerous.

    That is absurd that your doctor's referral to the POTS Clinic was rejected b/c you have "CFS" and I am glad that you will be filing a human rights complaint on behalf of Canadians. I am not sure what this entails but I wish you the best with it and please keep us posted.
     
  13. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Thanks - it is absurd, and that is the exact word I used in my email to that physician - just a fyi, here the org that will facilitate a complaint, The Canadian Human Rights Commission: http://www.chrc-ccdp.gc.ca/eng
     
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  14. TrixieStix

    TrixieStix Senior Member

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    are you able to seek out a TOS specialist? I think we talked about this before. The #1 guy in my opinion is Dr. Dean Donahue at Massachusetts General in Boston. A doctor at Mass General invented a specialized CT scan (with contrast) method that allows them to get very clear images of the brachial plexus and thoracic area. This is normally a hard place to get clear images. When I had it done in 2013 this scan was only available at Mass General.
     
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  15. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Thanks @TrixieStix

    I'm not sure I'm clear on what I would gain from a trip to Dr Donahue in Boston. What may "a specialized CT scan (with contrast) method that allows them to get very clear images of the brachial plexus and thoracic area" mean in terms of diagnosis or treatment?

    From what I remember reading, surgery and/or physiotherapy were the treatment options. I'd have to have very compelling evidence before I'd go under the knife. I also doubt TOS causes my severe symptoms - pre-ME I was swimming, lifting weights, shoveling snow, and grew up on a farm with lots of physical labour without any symptoms of TOS - I guess I think my TOS is a symptom of ME and if the root cause of my ME is treated, the TOS will dissipate. Not sure of that makes sense.
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    Best wishes with your letter and advocacy and I hope you get to see the POTS specialist (and that your letter will help others in your shoes in the future).

    Trixie, did you see the TOS specialist and have this test? If so, did they propose treatment for you?

    I was curious about this, too.

    It does make sense and it sounds like in your case, you did not do anything to treat the TOS but are hoping that as you treat the ME, the TOS symptoms will dissipate?
     

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