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-   -   Tyson, How did your IVIG go? (https://www.neurotalk.org/myasthenia-gravis/134324-tyson-ivig.html)

Shari_W 10-03-2010 02:07 PM

Tyson, How did your IVIG go?
 
Tyson,
I had you on my mind and am wondering how your first IVIG went? If I am correct you were to have it a few says ago. I have been getting IVIG for a little over 5 years now and it really helps me. I hope it will do the same for you.

If you are able to post, please do so and let us know how you are and how everything went.

Loving Hugs,
Shari

Stellatum 10-03-2010 04:26 PM

Yes, we are hoping it went well, and that it's the beginning of really good things for you!

tysondouglass 10-03-2010 06:51 PM

Thanks so much for asking! I was just getting on to tell you all how AWESOME it feels.

I had 4 days of it, at 40ml. Of course there were symptoms and some of my veins were appreciative, yet now, i feel honestly so good. I still have some symptoms and they may disperse yet im so much more happier because I feel somewhat normal again.



Thank you guys very much for being supportive, once again!

How are you all feeling?

cpu90 10-03-2010 07:13 PM

Hi,

I'm so glad it has helped you so tremendously!

I am the ICU guy and I'm still at the hospital, I finished my 9 (yes, 9!) rounds of plasmapheresis Friday, and they just started IVIG for me (5 days, I think 70 ml?) since yesterday!

When I was first admitted to the ER, they did IVIG on me a month ago, which really didn't help much at all and thats why they went on the plasmapheresis, and after the standard 5 rounds I showed *modest improvements so they added 4 more.

since yesterday's IVIG, I didn't feel much different, except I actually felt noticably worse this morning ( Chest extremely tight ), does anyone feel like the symptom gets worse before getting better on IVIG?

I hope this 2nd round of IVIG would actually help me and show some improvements for me soon too..!

Shari_W 10-03-2010 09:57 PM

Tyson,
:Dancing-Chilli: I'm doing my happy dance for you! It's so wonderful to hear that the IVIG has helped you!!! I know IVIG helps me and I am always happy to hear when it does the same for someone else. Just a word of caution for you.... PLEASE DON'T OVERDO IT even though you feel somewhat "normal" again! It's very tempting and easy to do once you feel better but always remember that you still have MG. You still need to pace yourself, rest when you need to and listen to your body when symptoms breakthrough again. I am praying that you will be able to find the right combination of medication along with an IVIG schedule that will help stabilize your MG. Enjoy your newfound strength! :D

cpu90 :hug:,
I ,personally, have never felt worse in regards to MG after my IVIG treatments, only felt crappy from the side effects. We really don't know why a treatment works for one person with MG and not for another. As you know MG can be a very individualized disease. Don't give up though. It sometimes takes a while before they find out what medication and/or combinations of medication/treatment will work to help stabilize your MG.

I'll keep you in my prayers,
Shari

tysondouglass 10-06-2010 07:22 PM

Thanks shari!

It helps with the overall weakness of legs and stuff. But my eye, and general fatigue sometimes sets in. Oh well right? Atleast I can breathe;)

Prednisone is killllin me but whatever, ill live.

Hope your well.

Marin826 10-07-2010 12:37 AM

Tyson I don't think that you take Pred long enough to "start killing you",but at this time it only helps you - to be stronger,to breath more easily.
Yes,it sure does have side effects, but are EFFECTS of the disease better?

So,until Imuran kicks in -take you vegs....I mean Pred, as it did help many people with different illnesses.I think you should stick to you Dr's order for now,and hope things will change to better soon.As for BP- your Neuro could Rx you some meds for that.
Take care.M


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