[huntress]

hi i have been in the hospital for 3 weeks now. after having asperation phemonia which led to a crisis. lungs collapsing. they have tried the ivig but only little response so now im on my 3rd plasma exhange due for my 4th wed. after the 3rd i feel a bit weaker its been 12 hours since my 3rd. i was wondering is it normal? i have bad bulbar symptoms cant swallow or talk good. how long does it take to feel the plasma? i really want out of the hospital but till i can swallow there not letting me go. what are your responses to the plasma exchange?

[southblues]

Wow. Sorry you are having such a hard time. I am not nearly as bad off as you are and I have never needed a plasma exchange. I did talk to a student of mine who's dad had severe myesthenia gravis. He also had several plasma exchanges. He was terribly sick in the hospital for a month; however, he got better and is doing very well now. Hang in there. I hope you feel better soon.

[limpy]

Sorry to hear you are having such a bad time. Plasmapheresis usually starts working by about the third or fourth treatment I was told. I started feeling better on the third day. Ivig did not do much for me either. Are you on anything else like prednisone?
I found that the prednisone made me worse, but that is me and we are all different. I started back on plasmapheresis yesterday and can tell the difference. It is what keeps me swallowing enough to stay out of the hospital.
Hope something starts working for you soon.

[huntress]

hi, yes the doctors just started me on predisone i think the day after i was admitted here. 60 mg, it was 2 weeks ago i began predisone. today i have my 4th plasmaphersis. friday is my 5th. i can feel the difference but not so much in my speech and swallowing. throughout this whole year i have had trouble with speaking and swallowing. it was the asperation phemonia that brought me here. litterly killed me 2 times. i was on the incubator for 1 1/2 weeks. an ngo tube in my nose, out for 4 days that i do not remember. my breathing is 100% on my own now. they tried to put a feeding tube in but my stomach is in the wrong spot so if i go that way i need invasive surgury. its been now 4 weeks that i have not eaten on my own. what i need is a good speech therapyst to help me. start off small. they are feeding me through a nose tube still. my throat is swollen slightly they say. for a while they took away mestinon, it helps me swallow and talk and see good. back on it finally, o u need it. lol...i feel like a lab rat here. in bed because they dont want me up on my own. i can walk, wash my hair. only issues left swallowing and speaking. so im praying the 5th plasma will make me whole again. how long before anyone notices a difference?

[cait24]

I am so sorry you are having such a rough time. I have not had plasmapharesis yet but I expect to start it soon. How long do they expect to keep you in the hospital? Please keep us updated with your improvement.

I will keep you in my prayers
kathie

[bny806]

goodness. soo sorry to hear all youve been going through!!! I don't have experience with that, just IVIG.. but sending positive thoughts your way that the next treatment fixes your swallowing and speech!

[Southern Bell]

I too am sorry for your experience. It is amazing how each of us have difference reactions to treatments. I have MG and SPS so I'm dealing with one very rare autoimmune illness (SPS). I was given mestinon when my first symptoms of SPS materialized. That put me in CCICU for a week where I was intubated and almost experienced congestive heart failure.

I have had 5 IVIG treatments with every little results, mostly with spasms. I had 12 plasma exchange treatments (all out patient) with no result what so ever and no adverse reaction.

I hope you can find something that will help you feel better. I have found that everything seems to be trial and error and we are all guinea pigs.

Southern Bell

[huntress]

wow, everyone is different here. i finished on friday my 5th plasmapheresis, im feeling much stronger today. I can actually smile, talk, chew and most importantly swallow my foods. I finally passed my speech and swallow test here in the hospital. I am on mechanically altered solids and thin liquids. finally after almost a month i can eat real food and not that stuff they stick through your nose. I still have that tube in my nose just in case but I believe I will be released Monday. yay...Thank God, praise to only Him. I am on 60 mg, predsone, 3 8 hour mestinon. soon the doctor was talking immuran to get me off the steriods. its been a long, long journey but i am making it through. I pray for all those out there with this hard disease that there will someday soon be a cure.

[limpy]

So glad to hear your good news. I can say I know what you have been going through. The most recent time I was in the hospital, they were going bypass the nasal tube and start me on TPN if I didn't start being able to swallow. Thankfully the plasmapheresis saved me and I got to go home. The real food tastes so good when you haven't had any for a while!

[cait24]

Awesome news that you are feeling so much better. i hope you continue to improve so you can leave the hospital soon.


kathie