Myastenia Gravis and CIDP!

Hi Everyone,

First of all, I am scared to death and I am so glad that I found this website.

I was recently diagnosed with CIDP and I had never heard of the disease.

I also have Myastenia Gravis since 2010. Diagnosed a year after I gave birth.

Not sure where any of this came from, but to have 1 rare disease is one thing...but 2!??! My head feels like it going to pop off! Why is this happening to me? How can this even be possible? There seems to be no plausible reason why this has happened. I keep asking, and all I get is we do not know why.

I am trying some lifestyle changes, but at 35, I have a ton of goals to accomplish and a 4 year old son to raise. Just wished there was a cure, or at least a known cause as to why this is happening to me.

Hi dear Donyelle, I read your story and I believe we all feel and think the same…I felt your fear while I was reading and sadness.,my daughter 15 has cidp, and its hard looking her and knowing I can’t do anything. But after I have cried for two weeks I woke up one morning, I was angry, and I sad to myself: ok, Mr CIDP, today is the first day of the personal war… So we (I have another two kids-boy 4, girl 11) changed our lifestyle, we all eat special diet food, I bought a dog (she is wonderful therapy for her when she came back from Dr or hospital…) we go on concerts, we spend lots of time doing funny things.,… It seams like we all respect time being together (before cidp we were always in hurry). I know this doesn’t help, but, like you sad, its great to find so many people with similarly problems on this page… I m sending you a big hug…stay strong!

Hi Donyelle,

What kind of treatment are you getting for your CIDP? I got IVIG for a few years (worked really well for me), and at the clinic I used to go to, there was a fellow getting IVIG for MG. If you are not getting IVIG, it might be something that would help both the CIDP and the MG. It would at least be worth asking about.

My heart goes out to you. CIDP is bad enough, but to also have MG would be a heavy burden. I will keep you in my prayers.


I to have many goals and I am not ready to give up up on them. Hold your head high and be proud of who you are and what you can do. I have had to undergo many changes. But I will not give up. Diet change helped me feel better . Reaching out to others and accepting that I am not alone has helped me to remain positive.

Hi donyelle I was diagnosed with CIDP and had to google it to see what it was!! I got the news two days before Christmas last year and have really appreciated this site! It seems like it affects everyone differently and the month of January was the worst so far! I had numbness from waist down and breathing problems and couple other issues! It seems like the IVIG infusions have helped to gain back the feeling and my Dr feels they are maintaining where I am at now! Not as active as I used to be but it’s functionable! My Dr thinks my CIDP started from a bad infection on my lower right leg! Hope this helps!

Donyelle I might add that I have found days I am very active makes me pay for it the next day! A week ago I over did it and slept for about 12 hours the next day! For me plenty of rest and sleep help me function better! I am being very careful to not over do it and relapse back to where I was in January!!

I agree with what all had to say above. One thing you must do is accept it as a challenge and not as a burden. I was diagnosed 2 years ago and have had treatments including IVIG and plasma exchange. I am now in full remission and have been for about 7 months. I know it is there, but I am functioning pretty much as normal. So it will get better. The hardest part was not knowing what was going to work and going through all of the hoops to get there. But I did get there and you will too. Once you find out what works, the disease is most of the time manageable with treatments and meds. I will keep you in my prayers and hope that you find what works for you and that you will be on the road to recovery soon. One way I learned to accept it is that I use it in my testimony of my faith and believe that I can help others who have obstacles they are facing. So just keep on keeping on! Harder said than done, I know, but it can be done!!