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

Sononomagirl
 

Hi, thanks again did not know about adding flax oil or walnuts while on prednisone. I will add flax oil to my green shakes in the morning. Not sure what my numbers were but bad enough for my pulmonary doctor to be very alarmed . He has followed me since 1994. Of course today with the large amounts of prednisone I have zoomed around all day. Sleep is difficult because of being wired from the prednisone. Yes MIPS was done please tell me MEP not sure what that is. You really are so well informed. Still gathering information.
Thanks again!

Sonomagirl
 

Annie,
Just looked up MIP and yes he did both test you mentioned. Not sure of numbers but as I said he was not pleased. He clearly saw in the sting that the rescue inhaler during testing made no change in results. This was when he asked more about overall strength. You know I had done well until April. The prednisone is really helping the coughing and breathing. Just need to slow myself down. Thanks again. Feeling very wired or batteries charged to high. I know that sounds crazy.

Pred can make you feel wired. It affects people differently. And insomnia may follow in those people in who it has that effect.

Pred is an antiprostaglandin. That's why good prostaglandins like omega 3s (no matter what the source, such as fish) are good to take while on it. Pred can reduce the gel coating of your stomach due to that, and you need to maintain a healthy stomach! Good prostaglandins will help you to do that. They're good for other things as well (i.e., brain function).

Some people even take vitamin C while on immunosuppressants to help with infections. Though do not take C at the time of day you take Calcium/Vitamin D. Calcium is best absorbed with food.

Get a copy of your test results. It's good for you to know what your numbers are (normal and abnormal). It sounds like you have a smart doctor who gets MG.

Annie

Sonomagirl
 

Hi,
All much appreciated. Yes my experience with prednisone has been wired. I have had to take it over the years for asthma flares. I have been adding flax oil and walnuts to my kale/spinach and fruit shakes. I certainly have an energy boost going on due to the prednisone. Still having some wheezing and coughing as the Pred . is decreased. Talked to my doctor and he wants me to stay the course. Been out on the salt water in the evenings and coughing is much less.

Yes I'm very fortunate to have a great team between my pulmonary and neurology docs.

Thanks again,
Debbie

I wasn't on the look out for a tipping point and new, missed the opportunity to pay attention. I felt like a wet noodle throughout the winter but was comparing that to pre-MG life. Now though, typing this reply is exhausting. It's been in the high 90's all week and we're topping 100 at moment - with more 100+ days for most of the rest of the week.

We live in a mobile home, do not have AC and couldn't afford the electricity if we did have one. Like I said, I don't where the tipping point is - but I passed it a long time ago.

Angell, You don't have ANY electricity? OMG. Or is it the BILL you can't afford? Do you use wifi? There has to be some kind of state program that could help you!! In my state, it's criminal to allow someone to be in that level of heat.

Then you don't even have a refrigerator? I guess I can't suggest a fan or cool packs then.

This isn't even funny. Can you call your state offices and ask them what kind of program that might assist you?

I hope you can find some relief. I'm not even amused that we can't take care of our own people in this country!

:hug:
Annie