Directed towards plasmapheresis patients
 

Hey All.

I have bulbar MG, and had a thymectomy the 30th of september. Though previous to the surgery, I had six sessions of plasmapheresis. I was feeling normal (from the plasma exchanges). I started the plasma exchanges the 16th of september, and was done the 29th. Now im feeling symptoms back, such as having to stop when coming up the stairs, not being able to brush my teeth at night, etc. I was just wondering who else has had the plasmapheresis and how long after having it, they started feeling weak again. The thymectomy is said to take 8 months to 10 years to show signs of help.

Thanks.

Hi Tyson,

I have bulbar MG too...The plasmapheresis treatments help me a lot, but my symptoms come back fairly quickly...Sometimes only two weeks after the treatment...

It sounds like you have a lot of limb-weakness...What bulbar muscles are affected by your MG? Mine are my tongue, palate, neck and chest muscles mainly...Oh, and facial muscles...

I also had a thymectomy this July...My MG got a bit worse after, but I have read that it's fairly common for that to happen with people who've had thymoma and have a lot of bulbar weakness...

Im sorry to hear that. It really is so annoying. Yeah alot of my symptoms are limb realated. Such as, hip, leg, shoulder, lungs, throat.

I hope my insurance will cover the act of more plasmapheresis.

Thanks.

Hey Tysondouglas,

Sorry to hear your not doing as well. I haven't had plasmapheresis since before my thymectomy in 02, but if memory serves me correctly it lasted about 3 weeks. Since it did work so well for you maybe your neuro will order it on a regular basis. Has he/she discussed this with you? It took 4 years for me to see the full benefits of my surgery, but I did see small improvements after the first year. When do you see your neuro again? If it's not for a while maybe you should call and tell him how you're feeling. Always let your Dr. know of any new changes. Take care and let us know how you make out.;)

Hugs,
Pat

I haven't had Plasma exchange in over 18 years and really want to start having it again because it did help me so much back then. Sadly they don't do it at my local hosp and the hosp where they do it is over an hour away and the Drs there really don't want to do it. I am thinking of talking my Dr into talking them into doing it because I just can't handle the medication very well.

Remember that you had MAJOR surgery and it was a shock to your body so your MG will be worse before getting better, MG and stress to the body don't go well. Give it some more time and you will look back on now and say wow, I can't believe how much better I feel :)

The plasmapheresis truely is an amazing medical procedure. I felt so much better, even after having my chest split open. I'm getting to the point where I get so tired I can't stand for more than 15 mins. My heart rate jumps and my breathing gets worse. Then I have to lay down. Tho then there are other times when I can run 30 mins. I hate how unpredictable this is.

Tho now I'm just so tired from everything, school, college apps, etc. I don't seem to have the energy for anything, which being an athelete, kills me. I'm torn.

How long have you all had mg? How old are you guys?

Thanks for all the support guys.

directed towards plasmapheresis patients
 

Tyson,
I am pretty recently diagnosed myself. Looking back my symptoms started close to a year ago but I have only been on meds for about 2 months. I have not had my thymus removed. I am 42 years old. I HATE how unpredictable this disease is too. I just told Nicky last week I feel so bad for her having to deal with all of this and she is only 26. I feel too young to have to deal with this disease at 42 so I can't imagine dealing with it in my younger years. Hopefully having your thymus out and being so young and healthy otherwise will give you a much better shot at remission. I know it is so hard to do but try and pace yourself, rest when you need to and when you feel good do what you can. Hang in there!!!
Kendra

Hi Tyson,

I hate that you are so young and going through this.
And yes being unpredictable is the nature of the mg beast.

I was 30 when I was diagnosed, I had a great job, was riding my horse, and fit.
Then I got mg, and crashed, I couldn't even get out of bed.
That was nearly 7 years ago, and Iam much better, but still am not working. I find I have good days and bad days, I try and walk as much as I can to keep fit. Summer is on its way, so the heat will knock me for six, so I have to take that into account, if I exercise too much I pay for it. I tell you all this not so as you get disheartened, but to show you how far I've come, from crawling into bed at 6.30pm sleeping till 10 then next day, to being able to exercise about every second day(depending of course).
We are all so different as to how our mg affects us, and I do hope you get back to being able to be as fit and athletic as you have been.
Do keep comming back, we all know what you are going through, and know what its like to not be able to do things. I still grieve about not being able to ride.
thinking of you
take care
Kate

Hey Tyson,

Yeap...I'm 26...It really does suck to have this, for sure...Last night, I experienced my first-ever, full-blown ptosis in my left eye...Since i've developed this disease, I've had a weak face, weak tongue, weak palate, weak neck and chest, weak fingers, wrists and arms, problems keeping my eyes closed all the way, but I never experienced the ptosis without it being super sunny out or something...Then last night, I was super tired, and felt sorta flu-ie, and I got it in my left eye- I even took a picture of it with my cellphone because I looked so bizarre...lol...I've been feeling really weak this past week, so I think I'm in need of a plasma exchange as well, especially after reading your good reaction to it:)...The last time I had it, I felt so strong afterwards, although I had sorta a bad reaction during one of the procedures, but my strength lasted up until a bit recently- that was about 2-months ago...

I've had all the weakness that I described up there, other than the recent-ptosis and slurred/nasal speech, for a very long time, but it wasn't as bad as it had become in Dec. of last year, severity-wise...I thought that I was just really tired, so I think I compensated for it for many years...

But you know what? I think that you are going to do just fine! You are young, healthy (other than maybe the MG, of course:)), athletic, and I just have a feeling that your thymectomy will really help turn things around for you, it'll just take a bit of time....

Do you know what I wish? I wish that our antibodies would attack receptors that we might not miss so much...Like, do I really need my baby toes? Not so much. I could maybe lure the antibodies onto them with a smudge of peanut butter (do antibodies like peanut-butter? I hope.). I'd be able to say a paragraph without sounding like David Hasselhoff after a few, and my baby toes would be fatigued often. That's alright. lol

But anyway, I think you'll be feeling better very soon...You just went through major surgery, so you're going to feel weak regardless...Give it a bit of time, and always feel free to talk about how things are going for you here...It's good to have others to relate to, and share with!:)

I wish you lots of luck!:)

I'd be able to say a paragraph without sounding like David Hasselhoff after a few, and my baby toes would be fatigued often.

Nicky, you are just ADORABLE!! I can say that because you are just a little older than my nieces -- sooooooooo YOUNG!! Now, I think I'm going to have to go find some peanut butter.................:D