Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
my brother came home from his soccer game today with a runny nose, cough, a phlegmy voice, the whole nine yards. He says hes been sick for a couple days I just hadn't noticed until now. so, naturally im freaking out making him wash his hands constantly and blow his nose whenever I hear him sniffle. I now its only a matter of time before I get sick and I think its finally coming on. ive had three nights of poor sleep (night sweats and extra energy from steroids are a killer) and a headache all day. its one of those headaches behind and underneath your eyes which can only mean one thing: congestion in my sinuses. now I have a sore throat and runny nose too!
believe it or not I have only had one cold since being diagnosed in January. i got a cold in February and that's when i began having my first breathing problems. about a week after getting over my cold i was admitted to the hospital for breathing problems because i was apparently in the midst of a flare. it was so early into my diagnoses that we didn't know breathing issues warranted a call to the doctor, because it was so normal for me to wake up in the morning with a trembling diaphragm and weak lungs.
Anyways im just a little worried because my cold hit me pretty hard then when i was only on mestinon. now im on steroids and cellcept so im just praying my immune system is strong enough to fight this cold off quick.
Are colds hard on you guys?
im under the impression that colds are the kiss of death for people with mg on immunosuppressant's but maybe im making a bigger deal of this than i should.
Annie
believe it or not I have only had one cold since being diagnosed in January. i got a cold in February and that's when i began having my first breathing problems. about a week after getting over my cold i was admitted to the hospital for breathing problems because i was apparently in the midst of a flare. it was so early into my diagnoses that we didn't know breathing issues warranted a call to the doctor, because it was so normal for me to wake up in the morning with a trembling diaphragm and weak lungs.
Anyways im just a little worried because my cold hit me pretty hard then when i was only on mestinon. now im on steroids and cellcept so im just praying my immune system is strong enough to fight this cold off quick.
Are colds hard on you guys?
im under the impression that colds are the kiss of death for people with mg on immunosuppressant's but maybe im making a bigger deal of this than i should.
Annie
When you have a cold, your immune system revs up to fight off the cold, as part of that not only the good part of the immune system is more active but also the bad part which causes your MG. Cellcept and prednisone suppress both the bad part and the good parts.
Your right, you do want to be carefull of breathing problems, a call to your doctor is a very good idea.
I hope your cold passes soon, be sure to give yourself plenty of time to rest.
Best wishes
Joe
One year we all had strep and passed it back and forth. After that, everyone had their own tube of tooth paste, instread of sharing one.
I know how frightening this can be. My supervisor had pnemonia last year and kept coming to work sick, sick, sick! I was in panic mode. Just do what you can to keep you free from germs.
BIG HUG!
Barbel
Perhaps since this is your first cold, you might check with your neuro nurse to see what they recommend as far as cold treatment goes.
Also:
You know the signs of breathing troubles and to call your neuro and go to the ER.
Watch your fever. If you start running anything over 100* put a call into your neuro as might need your white counts checked. (When you are immune suppressed, they can get low with an infection). A person with immunosuppression doesn't have to run a high fever to be sick.
Hope you kick the cold soon!
Hugs:-)
Joe
Angie
All we can do is rest and wash our hands.
once you get through the first cold it will give you more confidence. We have to rest.
Mary
I hope things work out quick for you Annie.
Dan
I monitor myself and like Angie says drink lots of water and rest as much as you can.
I have what I hope is only a "cold" now, and boy is it kicking my butt.
I am only on Mestinon at this point, but I sure still feel like crap.
I can't remember the last time I've been "sick", maybe 2 yrs?
Everybody in the house has passed it around, but they are all better now. It's really dragging-on for me though. To be expected, but still concerning.
Time for a nap !
By the way, I don't think you are making a bigger deal of this than you should, you have a compromised immune system and a cold for a person with MG is usually equivalent to a normal person having pneumonia, it is not a laughing matter. I hope you find something that works for you. I always seek alternative treatments other than meds since I am allergic to most of them since I've been diagnosed with MG.
I wish you the best and stay positive. Take care.