[bny806]

I have a question for yall.. when yall get sick, with a cold/cough or GI bug does it exacerbate yalls symptoms? I can usually manage the first few days of an illness pretty well, but then it seems to catch up with me. I had the stomach bug this past week, and while I was nervous how my body would handle the whole throwing up (which I did just fine- without choking etc), I did well until the day or so afterwards and now it's hard to lift my feet, my swallowing is WAY worse again and breathing a little worse too.. My eyelids and face aren't as bad- i think maybe since it got cold out- that always helps!
I also missed my IVIG (scheduled every 2 weeks) due to the stomach bug, which doesn't help any! I also had a cough a few weeks ago and did great until about a week in, when I started having more respiratory issues and shoulder and hip weakness- that all got "fixed" or improved with last round of IVIG..
that is the main reason immunosuppresants scare me - would it make me get sick even more often??

[Sam]

bny806,
I can't speak for others, but "regular" illnesses such as stomach bugs, make my symptoms worse, without a doubt. Your body can only absorb so much punishment.

Whether or not immunosuppressants would leave you open for more illness is a good question to ask your Dr. Some of it probably depends on the seriousness of your current situation, and some on the way your body responds ot physical insult.

If you already have respiratory problems, and found that your recent "bug" made that worse, it might be a good idea to let your Dr. know. That way, if you wind up having to go in and see your Dr. because your recent illness has caused problems, your doc will be ready.

Sam

[SoftTalker]

Hi bny

New member of this group - but not new to MG.

I agree with Sam.

Call your doctor if your symptoms - especially breathing issues - get severe.

Haven't had to call my neuro often - but he has always been willing to take the call or to call me back.

Yes- even a common cold or stomach flu can exacerbate MG.

Also - missing your IVIG may be contributing to your exacerbated symptoms.

p.s. Immunesuppressants are often a "necessary evil" with MG and other illnesses/conditions. Your doctor (and you) will monitor the "pros and cons" of immunesuppressants and make the right decisions for your particular situation. You may not always need to have IVIG treatments.

Let us know how you are doing.

[bny806]

Thank yall so very much.. I am finally recovering from the bug, and my strength seems to be returning slowly.. I had a few days where it felt like I had concrete in my shoes and arms, and throat!

I have an apt with my neuro on tuesday- i am SOOOO nervous.. as I don't have a firm diagnosis, I always fear they are going to tell me something awful!

Do yalls lungs ever feel like they haven't expanded enough at nighttime.. When I wake up in the mornings I feel like I haven't breathed deeply all night long.. it has felt like this for over a year.. though after my 1st few rounds of IVIG I was all better for many months until the recent cold I had.. I have pulmonary function testing this week too . just curious if yall have that sensation during exacerbations

[jana]

Originally Posted by bny806

Thank yall so very much.. I am finally recovering from the bug, and my strength seems to be returning slowly.. I had a few days where it felt like I had concrete in my shoes and arms, and throat!

I have an apt with my neuro on tuesday- i am SOOOO nervous.. as I don't have a firm diagnosis, I always fear they are going to tell me something awful!

Do yalls lungs ever feel like they haven't expanded enough at nighttime.. When I wake up in the mornings I feel like I haven't breathed deeply all night long.. it has felt like this for over a year.. though after my 1st few rounds of IVIG I was all better for many months until the recent cold I had.. I have pulmonary function testing this week too . just curious if yall have that sensation during exacerbations

Are you sleeping on your BACK or your SIDE?? I'm primarily bulbar (with DV) and can ONLY sleep on my side. If I sleep on my back, I feel like I'm suffocating or drowning.....cannot get a good, deep breath.

[Anacrusis]

Originally Posted by bny806

I have an apt with my neuro on tuesday- i am SOOOO nervous.. as I don't have a firm diagnosis, I always fear they are going to tell me something awful!

You donīt have a firm diagnosis but you sure got some firm symptoms!
So just remember that tomorrow....and Good Luck

[bny806]

Jana - I ususally sleep on my side, I have heard other people say that lying on their back they feel more short of breath, and I don't feel a difference.. in fact sometimes sitting up in the car can be the worst.. but also it just varies SOOOO much day to day, it really is crazy how it fluctuates!
I don't feel short of breath most of the time unless I really exerted myself - going up the stairs with a kid in my arms etc.. every muscle in my body just almost gets paralyzed by the top of the stairs when my symptoms are bad.. when my symptoms are bad simply reading a book to the kids makes me short of breath, but usually I'm decent, especially when not exerting myself.. but I almost always wake up in the morning feeling like I didnt breath deeply enough
. and when my symptoms are bad I also wake up feeling like I didn't close my eyes tightly all night.. but when my symptoms are good, they feel fine!? Do you feel like this too? Did you ever have to use Bipap or anything at night? I don't have morning headaches or any of the other warning signs, but still it's anxiety provoking!

Anacrusis - thank you so much.. I tell ya, I always think I'll get used to these appointments, but its been four months or so and I'm just as nervous as ever!!

Thank yall both for your support!! I really appreciate it!

[jana]

When I am REALLY short of breath, I have noticed that my heart POUNDS -- almost HURTS. This happens a lot when I am in an exacerbation -- especially when I go up steps or try to walk too fast or pick up something heavy.

I dunno -- I sleep with a fan/air purifier -- blowing IN my face. Maybe that helps me breathe better? So sorry you are getting enough air. I have asthma, too -- not getting enough air is a BAD feeling!!

I don't think I need a BiPap or CPap, yet -- I don't have any symptoms, either. NOT really wanting that mask on my face -- makes me think about the thing they put on me in the MRI.

My eyes closed fine UNTIL I started having bad DV last Fall. When I went to the neuro-opthalmologist, he saw how dry my eyes were and told me about OTC drops and cream to use (from Walgreens). I don't like the cream (scary to get a tube that close to my eye) -- but, the drops feel AWESOME!! And my sceleras have gone from grayish BACK to white.