poniedziałek, 15 kwietnia 2013

Questions to edesers VIA

Hello there!

I am thinking of making a blog note about questions to edesers type 6 as there is not enough information on the Internet. Here are my question I'm looking answers to but it would be great if any "six" added their questions and put it forward so that other sixes could answer if they can.

Questions to edesers VIA:

1. I specifically need all information on lysyl hydroxylase. I can't find anything that I don't know. Especially I would like to know how hydroxylase reacts with serotonin because it has nearly killed me and I need information for my psychiatrist.
Does it (and if so - how) react with other medications besides SSRI? Is bupropion ok for me? Won't it cause serotonin effect like SSRI meds?
I only know what is available on the Internet. Still not enough for my doctors.

2. Which opiates do you take for pain? I heard metadone gives good results, is it true? (I'm taking zaldiar - tramadol + paracetamol, which is just a candy and does not work).

3. And can you give me some advice on trigger point injections, if you know anything, please? Is there any chart of these points to show to the doctor? I know lidocaine does not work so what kind of substance would? I heard there are 27 trigger points in EDS but cannot find any information on it. The pain is just unbearable.

4. How do you cope with hypotonia? Do oxygen bottles or concentrators work? I'm asking because on the ER I was told to get one for myself. I sometimes get to the ER twice a day because of breathing failure.

5. Did you hear about bone marrow transplant in EDS6? I was told by a hematologist that it should have been done by the age of 5 and now it's too late.

6. Do you, by any chance, have any advice how to cope with vision loss because of the accommodation failure? Is there any way to stop this to worsen?

7. Do you use smart crutches and if so do you know anything about them causing deep veins ruptures? It's really frightening, my veins behave just like in a vascular type.

8. I cannot use a normal wheelchair - can you possibly recommend any electric one suitable for edesers type 6?

9. Is there any way to stay alive after 40? I'm 36 and as far as I know there are not many edesers type 6 this age... The question is what heart medications should I take to keep my heart from breaking? I have mitral, aortal and tricuspid valve prolapse, heart aneurysm and left heart fibrosis, tachycardia and artial fibrillation. Also a high blood pressure. What beta-blockers should I take? I cannot find any cardiologist who would like to gain knowledge about EDS. I'm taking Bisocard but it hardly works.

10. How to stop bile duct disfunction? It stops me from taking medications I should take and makes me anaemic all of the time. It stops me from taking morphine.

11. How to increase resistance to infections? I keep taking a few antibiotics a month because of many inflammations and infections of all types. I took interferon once and it was good. Now the doctors want me to take immunoglobulines although my IgA and IgG are ok. Is it worth trying?

12. What kind of medications can substitute morphine which I could not take anymore because of a bile duct disfunction?

13. Have you tried Bowen technique? Does it work for you? Can an edeser use termolesion?

14. Does hyaluron acid work for the joints? If so - what dosage?

15. Has anyone had shoulder tendons transplant? And if so - how long did it work without hydroxylase?

16. Have you tried a bladder operation to stop urinary incontinence? Does it work?

17. How can I avoid pancreatitis? The risk is extremely high because of the bile duct dysfunction which is hardly possible to survive for edesers VIA. I was told that I'm not gonna make it if it happens.

18. How old was the oldest "six" you heard of?

19. Have you ever had cists in your finger joints? Have you operated them or do anything to ease the pain?

20. I was told that I immediately need the whole spine stabilisation because kyphoscoliosis is dangerous for me. It is supposed to help also having my head up. My head never stops and I hate it esp. when the bus starts moving. Have to push my head forward so that it didn't lie on my back. It just suddenly leans on my back with all its brunt and touches my back. Is it worth trying or will it be just worse?

21. Is there any way to help disautonomia? This one altogether with hypotonia make me want to die, because I'm even not strong enough to breathe very often.

22. How about hip operations? If I operate them will they hurt and dislocate less or will they stop me from walking?

If you have any question please feel free to ask.

4 komentarze:

  1. Kilka sensownych odpowiedzi dostałam na amerykańskiej grupie eds, i to w ciągu kilku minut!


  2. Jeszcze kilka odpowiedzi od Hannah :-)

    Hannah Ledsom
    erm Question 2. I take 30/500 Co-codamol for pain, they won't give me anything else because of my age
    Question 4. with my hypotonia I just seem to rest, I feel sometimes like I need oxygen but they rarely give me any. I also have Bronchiectasis and Asthma which affects my breathing so not sure what is to blame for what
    I haven't heard of a marrow transplant in 6ers but doesn't mean it wouldn't have helped

    Hannah Ledsom
    7. I do have Smart crutches, I find them a tad heavy but very useful, much better than regular crutches, I use them in the house an use my chair outside, I haven't heard of them causing deep vein ruptures no, my veins are also very 4 type but I haven't seen a problem [fingers crossed] I've been using them for 2 -3 years just about

    Hannah Ledsom
    8. I've been stuck with my normal wheelchair because my grandfather wouldn't allow the house to be adapted I rarely leave the house now but anyway erm, I have used electric chairs on occasion and I've found a few things, I can't recommend a particular brand but it needs plenty of support, including head support and possibly a seat belt that holds you up. Also I find that the sensitive joystick controls work best, some take too much pushing and button ones are useless

    Hannah Ledsom
    I can't take beta blockers because of my asthma, my heart problem at the moment that can be treated is my POTS so my heart goes way too fast when I stand up so I've been given Ivabradine to slow mine down, it's an anti arrhythmia med but slowing the heart is an unlicensed use, so not sure. I have mitral prolapse at the minute but they haven't treated it yet (still waiting on a cardiologist) I think there is a pretty good chance you could make it to 40 but I'm no expert; my friend Gail is in her 40s and she's a 6er with another condition as well (Which I've forgotten) so it is entirely possible, the only other 6ers I know are kids so I'm pretty useless there. I have a good cardiologist but he's here in Liverpool

    1. Hannah Ledsom
      11. Immunoglobulins could be worth a shot, I get a lot of chest infections which is probably what caused my bronciectasis (which in turn causes more infections ) I've found a bit of an improvement with taking vitamin supplements but not sure if it would work for anyone else, I'm on Augmentin right now weirdly

  3. 13. I haven't tried it no
    15. they wouldn't attempt a transplant on me, they said it was too risky and wouldn't work for long enough [shrugs]
    16. No, they said it was too risky, I've been using the Tena Lady.


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