How hot is hot?
 

At what point does the temperature start to affect your MG? I start to feel my MG at about 78 degrees. I am always amazed to see people out running or walking in 80-90 degree weather. My husband loves the heat. He can lay out on a hot rock and it does nothing to him. It hits 80 and I feel like a limp dish rag.

Hi Kim. This is my first summer with generalized MG. I'm finding that temps over 80 seem to be my tipping point. I can run errands for about 2 hours, then it's get home quickly, totally exhausted. It then takes up to 2 days to recover.
My Neuro advised me to stay indoors, turn the air on, and go outside only when absolutely necessary.
If you're used to being active with boundless amounts of energy, this new 'norm' is very hard to accept.
Good luck to you! Here's to counting the days till fall.

i start feeling the temp affect around 72 degrees. by the time it hits 80, I can barely go outside. In the winter, I set my thermostat to 64 and I am comfortable. In the summer I set it to 74, close the curtain, blinds, keep the lights off and turn on all the selling fans.

kathie

Sonomagirl
 

Thanks for your input. I am a new MG person since November 2013. I had IVIG infusion for 5 days just 2 weeks ago. . After about 4-5 days I felt wonderful. Still on 180 MG of Mestonin a day and 180 MG of time span release Mestonin . Very much a outdoor person and on the water frequently. It will be 2 weeks Monday since I finished IVIG. In the meantime we have been in the Keys with family for a birthday celebration . Did great in the pool, etc. kept up my daily naps and early to bed. For the first time in my life my ankles and legs became so swollen
and became very congested and severe wheezing by the time we reached home last night. Today in bed, elevated legs and used my nebulizer 3 times. Swelling is better but not completely. Congestion has continued.
Has anyone else had any swelling of limbs in conjunction with respiratory problems? My neuro is not on call. Any suggestions or responses will be helpful.
Thank you from Savannah Ga.

You should call your doctor. I am on prednisone and so am use to swelling. if you are not on prednisone, i can not think of any MG reason for swelling. Let us know what the doctor said.


kathie

Sonomagirl
 

Thank you for your reply. I will talk to my doctor tomorrow. She was not on call this weekend. No prednisone at this time. I just was not sure if it could be an effect from IVIG or meds listed. Thanks again.

Thanks everyone for this clarification... I find that 80 is my tipping point too. But I had been wondering what temperature other people were noticing an effect.

I have also had swollen feet, though I am not sure that this is connected in any way to MG or to temperature.

Hi, Kim. Too hot is relative and it only matters what your threshold is.

It's not only the heat, but the humidity and how much you do while in it. And how many days in a row you do activities in it.

I personally hate anything over 70. If there's a breeze, maybe a bit higher.

Sonomagirl, You need your breathing evaluated by a pulmonologist right away. You might even need a cardiologist. Please, don't delay.

Annie

Sonomagirl
 

Thanks Annie and everyone else out there trying to figure things out and off help! I would not know the questions to ask if Annie and others were not on this site.
Update- neurologist ran a full panel for the metabolic, and blood work for kidney function. My pulmonary doctor saw me today. He was not getting my messages and had no ideal that his office had been speaking to and ordering medications since late April. All the changes in insurance had me communicating with PA's etc. He took full responsibility. Did a chest X-ray and pulmonary function test. X-Ray ok, function test not. My rescue inhaler was not helping during a asthma flair which had been once a year until the last 2.3 months. Swelling which he agreed had never occurred is believed to be an after effect from the IVIG. Started me back on a heavy dose protocol of prednisone. Hate the stuff but it does work in my case. See him again in3 weeks if not sooner if needed. New everyday inhaler for maintenance. He wants to review everything with my neurologist and discuss possible weakening in my chest wall muscles. Concerned that the rescue enhancer nor treatments made any improvement. In the meantime naps, indoors majority of the time and continue my MG meds.
I'm a lucky person to have doctors willing to work together.
I continue to learn from your postings Annie and Pingpongman plus many
others. Thank you! Without all of you this would be a little more lonely in this process. Still learning!
From Savannah, D

A D-Dimer might be in order, too. Clots do occur after IVIG, especially for those who have clotting disorders like antiphospholipid antibody syndrome that have gone undiagnosed. APS is quite common. And you already have other AI issues.

And I still think a cardio eval or an ECG are reasonable measures when there is swelling! Don't assume it's the IVIG or breathing issues.

You're very welcome, and I'm grateful I can be of help. Don't forget calcium and vitamin D while on Pred, plus good prostaglandins like flax oil, olive oil, walnuts, etc.

How bad were your PFTs? Were MIP and MEP done? Those are essential to do!

Yes, it's very good that you have doctors working together.

Take it easy!

:hug:
Annie