[gonslo45]

Hi,
was diagnosed with DCM in 2001. Had biventricular pacemaker fitted April 2009. Am having fourth lead into my heart fitted today as part of an experimental trial.Have just been diagnosed with MG and have discovered a link between DCM and MG. As far back as the turn of the century DCM was known as Myasthenia of the Heart. One of the causes of DCM that has been under constant investigation is autoimmunity.Has anyone else heard of this or had a similar experience?

[suev]

Hi gonslo - and welcome!

No I hadn't heard of this relationship before.

Hope your procedure goes well - - and look forward to learning more about the MG / DCM interaction.

Sue

[mrsD]

The word myasthenia means weakness of muscle. I think it is just another application of the term to another body muscle-- the heart. Someone correct me if I am mistaken.

Sometimes there are duplications in medical terminology.
Charcot foot, is not related to Charcot-Marie Tooth disorder, for example.

There are many causes of cardiomyopathy.

[Maxwell'sMom]

Yes, Yes, and more Yeses. I have Dysautonomia, and my cardio checks me often. I've had problems with my heart since my late twenties. I was diagnosed long before being diagnosed with MG.
And since the MG diagnosis, both my cardio, and my Neuro are monitoring my heart. I see my cardio on average every 8 to 12 weeks. For years, it was every 2-6 weeks. It took a long time to get things under control. And infact, both Neuro, and Cardio don't do emg's on me anymore because it will throw my heart into a frenzy on and off for months.
Things can get complicated, but you hang in there, it will all work out. It may take a while, but it will work out.
Keep listening to your body, and mind it when it says to rest. I learned the hard way, and truth be told, I still have my moments of not listening, but boy do I pay for it.
Much Love, and prayers
Lizzie

[AnnieB3]

Hi, Gonslo. Welcome.

From what I've read (and I'm no expert by any means), it's more likely a genetic component that predisposes you to both MG and cardiomyopathy.

http://content.onlinejacc.org/cgi/content/full/38/1/184

If you have breathing problems for any extended period of time, your heart can work harder and become "larger," as in dilated cardiomyopathy. My Dad, who had a bad aortic valve for years which lead to a high BP (another cause), had DCM.

MG affects skeletal muscles. I don't know if they've really studied effects of MG on the heart very well. Some of the GI tract is affected by MG and that is smooth muscle so I don't think there is enough info on all this to make any kind of good conclusion.

I'm sorry you are having to deal with this very tough health issue. I hope the procedure goes well.

Has anyone checked your kidney function? Problems with the heart directly affect the kidneys. If they haven't, please make sure someone does! My Dad had kidney failure from his heart problems.

Annie

[Maxwell'sMom]

Annie, I'm so glad you brought that up about the kidneys. That's very true. I'm in stage 3 kidney disease, and have to have procrit injections,never ending iron infusions.
I hate to say this, but it's can't be said enough. We have to be diligent in our health. Even though I do know it's a pain in the neck, please we must keep up with the labs. Especially when on Immunos.
Actually many things can start to tank from Immunos, and one medical problem seems to lead to others.
Love Lizzie

[gonslo45]

For me this is very important as if my 4th lead implant does not work I am deemed to have a terminal illness as there is no other therapy available as I am already on optimum medication for my heart.
I have now discovered that treatments for MG are being used to treat DCM with a high degree of success. I assume you all have heard of plasmaspherisis and immuno adsorbtion.UNfortunately at the moment this treatment for DCM is not registered with the UK equivalent of the US FDA. THerefore it is not available. I am hping i will be given it for MG and may therfore, "kill two birds with one stone".
Would br interested in comments from those of you who have had this treatment for MG.
Best regards.

[jana]

Originally Posted by gonslo45

For me this is very important as if my 4th lead implant does not work I am deemed to have a terminal illness as there is no other therapy available as I am already on optimum medication for my heart.
I have now discovered that treatments for MG are being used to treat DCM with a high degree of success. I assume you all have heard of plasmaspherisis and immuno adsorbtion.UNfortunately at the moment this treatment for DCM is not registered with the UK equivalent of the US FDA. THerefore it is not available. I am hping i will be given it for MG and may therfore, "kill two birds with one stone".
Would br interested in comments from those of you who have had this treatment for MG.
Best regards.

I've had plasmapheresis (PEX for short). It was rough for me -- I "died". I'm not sure that you could handle it with your heart condition. I don't know what you mean about immuno adsorbtion -- might it be the same as IVIG?? I've had IVIG -- Intra Venous Immuno Globulin -- another common treatment (here in the US) for MG. I couldn't handle that either -- but, many, many MGers seem to have few, if any, problems with IVIG.