I was wondering about the Plasma exchange. I will be checking out your videos. Hope you are doing well now.

Pastor Steve

I just watched your video. You have definitely improved. Like me, though, not as much as you'd like.
I started getting plasmapheresis every other week and have noticed an improvement over waiting until I go downhill each time.
Hope you continue to improve.

Wow, you really do look much stronger than the last video. I'm impressed with the improvements but I can also see how limited you still are.

Like you, I build Co2 and it's seems harder to push air out than to get it in the majority of the time. Another reason that inhalers won't help me. I've requested a Bi-pap study but the sleep specialist here does not believe that it is necessary. Ugh! The C-pap does help with my cluster headaches and migraines though so I keep using it.
It doesn't take them away but it does lessen them to a degree.

I've been requesting plasma exchange for a couple of years now but nobody is willing to help me advocate for it and I don't have the strength to fight everyone to get it done. My feeling is that plasma exchange is a slightly safer route than IVIG for me given all of my allergies... but I could be wrong.

I'm sorry that you feel so lousy though. I know it isn't easy to feel that way every day. That's what I live with too. I feel like I have the flu all the time. My body aches, my head hurts, I'm weak and 99% of the time don't even have the energy to fix myself something to eat. I rely a lot on protein drinks and bars to get me through the day and I am thankful for the hubby who fixes my lunch sandwich and snacks for work days.

I hope that you continue to improve and that you will get to feeling better too. I look forward to your next video, as well.
HUGS

Pleased to see that it works for you!

I have wondered about the "immediate" improvement seen by IVIG and PLEX treatments. I wonder if anyone has a theory of why the quick results. My thoughts:
1. If MG is a blocking of receptors rather than a destruction of them (or at least partly just blocking) then unblocking existing receptors would be a quick result. Generally the science I have read is somewhat vague about blocking vs destruction,
2. If MG is from receptors being destroyed, then they must grow back very quickly when the antibody attack is lifted. So can receptors regrow in a week or two?
3. Most folks taking prednisone for relief from poison ivy, or other immune system reactions get relief with at 5 day treatment--as their immune system quits production of those antibodies after a few days of prednisone. So why does it take months for relief from MG? Is it because the antibodies in the blood stream that are already there stay around that long? Or doesn't prednisone stop the production? or are the receptors not growing back rapidly? Or ???
4. ????'

Never quite got a clear understanding how the IVIG and PLEX are so rapid in improving things. Any thinkers out there who have a theory or who have read one that explains on a blood, receptor level what is going on?

I suspect you have seen this abstract. The idea presented in the last sentence always throws me for a loop. I have read the same thing in other sources. If this notion is true, why should plasma exchange work in the first place? Something doesn't add up. http://onlinelibrary.wiley.com/doi/10.1002/ana.410110209/abstract

One thing I have noted over the years is that it takes longer to recover after each plasma exchange session. My neuro thinks this is because of both clogging of receptors and increased damage as my MG progresses. I was on a fast downhill track that is now a slow downhill slide, but still downhill--even with all the treatments I have had including 22 months of cytoxan. PLEX cleans my system, but the damage is there. --Kerry

Are your doctors satisfied with the extent to which you are immunosuppressed? Can greater immunosuppression be endured without peril? Do you pursue alternative means (diet, namely) to keep your immune system in as low a state of arousal possible? I know, you have probably touched all these bases already, but, being tedious, and a bit obtuse one more time in my life won't matter much. I ask because I care... HG007

I agree with the theory that the antibodies are clogging the receptors, and in my case with Lems are clogging the calcium channels that are releasing the acetylcholine. But, I also feel there is sustained damage to the receptors and the calcium channels.
I have also noted lesser impact of plasmapheresis since I first started it, and I do have a lot of nerve degeneration, that has gotten worse since then.
I used to be able to practically dance a jig after plasmapheresis. Now I'm better after, but not so markedly.

HappyGuy007--They are happy I am not going down as fast as I once was. We have tried several things to keep my immune system suppressed and it does buy me some time between plasma exchanges. That is why I have done 22 months of cytoxan chemo. I have also had IVIG (did not work for me). Tried Rituximab, worked like cytoxam but much more expensive. Did Cellcept 2,000mg per day for about three years and could not tell a difference. Had a thymectomy in April 2014 and still waiting to see if it helps. I am serum-negative and my MG most likely started after a tetanus vaccine, along with small fiber neuropathy. Just a really strange case. At one point in the beginning of all of this I even had indications of Axonal GBS, diagnosed by EMG, but that cleared up, Thank the Lord.

Been checked for celiac disease by biopsy and I do not have it -- Yeah! Some foods bother me (egg whites) and I try to avoid them. I see the neuro at Vanderbilt again in early August.

My educated guess is I will start going down hill again in about 6 week, if I fit the usual pattern. I may do another video at the time.

Thanks for asking and caring.

Kerry, thanks for responding directly to my post... Sounds like you have a great infield... All the bases covered... The outfield... Never a doubt. You truly are a strong man. ........ HG007

Kerry did you see this clinical trial? Its under latest news Clinical trial results in the MGFA website (top tab under research)

Alexion Myasthenia Gravis Clinical Trial
Alexion Pharmaceuticals is conducting a clinical trial to determine if eculizumab is effective for the treatment of patients with refractory generalized Myasthenia Gravis (gMG). This is a global trial, with approximately 100 sites in North and South America, Europe and Asian-Pacific countries are taking part. This study is currently looking for patients with refractory gMG

HappyGuy007 -- You are welcome.
lindsayamal -- I will check it out. Thanks
--Kerry