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- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - hypotention (https://www.neurotalk.org/myasthenia-gravis/87181-hypotention.html)

Quote:

Originally Posted by Joanmarie63 (Post 511452)

I have the same problem, in fact just this morning I almost passed out in the driveway, thank goodness my husband and son were there to help me. I have normal blood pressure and take no meds so I don't know why it happens.

Hi Joan,

I hope you have that checked out...wouldn't want that to happen to you if you were alone. Take care.

Pat

Hi Annie,

Thanks for the advice! I just sacked my neuro this morning, so am currently without a neuro.. He kept insisting that a lot of tests have already been done for me and since its all negative, he's not gonna do anymore of them. Am so sorry I missed your post before I sacked my neuro. :eek: I'm not sure what to do now, am just taking my time to slowly get up or stand still after i stand up till the dizzines goes away and my vision returns. Its usually quite fast, maybe about 30s. I thought it was normal.. Can I do it at a GP? I don't have any of the stuff you mentioned, bp cuffs etc.. Will see where I can get it around here.

Quote:

Originally Posted by AnnieB3 (Post 511990)

Annemarie, More and more people with MG seem to be having problems with orthostasis (the ability of your body to adjust to changing positions).

The autonomic nervous system is weird!!! They don't know lots about it. It is not a normal thing for someone with MG to have a tilt table test. My cardiologist has been threatening me with one too.

Just have it done. The thing is that it's not what your regular BP sitting around in a doctor's office is that's important in this situation. It's what happens to it when you shift positions. That's why they do the tilt table test. They look for lots of stuff like whether or not you have increased sweating.

Redtail, An increase in heart rate can mean that your MG is getting worse. That should absolutely be reported to your neuro. When the heart can't get enough oxygen, it "speeds things up" in order to get more blood/oxygen to it and the rest of the body. It can also go up during an infection. An increase in heart rate can also mean that you are dehydrated. It usually goes down during overhydration. There are exceptions to every rule though.

Connie, what you are describing is not normal and highly dangerous. Bring this up to your neuro right away. A tilt table test is EXACTLY what you need too. You may have orthostatic hypotension, meaning your BP drops when you stand up. It can be an indication of POTS (postural orthostatic tachycardia syndrome). If your pulse goes up 30+ upon simply standing up, that is one indicator they look at for POTS.

Do you guys have "tools" at home like heart rate monitors, like people use when they exercise? Or a BP cuff? Take your BP/pulse lying down and then take it right after you stand up and then at the 1 minute mark. Connie, if you can't stand up like that without fainting, then just sit up and do it!!!

Geez, guys, I sure hope you are telling your docs about all this stuff. It's NOT normal!

Annie

Sounds like you have waaaay too much on your plate! I have had problems with my hubby expecting me to do more - told him "There's the door" - I am not going to deal with this and deal with any bs from him! He saw the light! I think he was just scared and didn;t know how to deal with it!:D

Is anyone HELPING YOU? Sounds like you are doing the job of a whole family - with MG no less - that really isn't right!

Do you belong to a church or some other organization that could come by and help clean your home?

My thoughts and PRAYERS are with you and your family!
Erin:D

Quote:

Originally Posted by annemarie (Post 512223)

Thanks for all the responses! And AnnieB3, I'm going to order my doctor to order the tilt tests! I'm tired of waiting, waiting, waiting. I feel like I'm always directing him what to do.

Erin, bless you for asking about the family. Unfortunately, we're rather dysfunctional. I don't get much support. Two grown sons, and sometimes small grandsons, still living here at home. I'm still expected to do all. Husband's work keeps him out of town, I get chewed out for all the things I haven't done when he comes home. Nuff said. I know there are many people out there that have things worse off, so I try not to complain. The sun is out today, should be in 70's. I can sit outside with 2 year old grandson and watch him play and enjoy every second!

Annemarie

Erin, you are always so upbeat I can't help but feel better reading your posts! You give so much support and love to people you don't even know! And you sound like you are much worse off with the mg than me. You are truly a special person.

Not long after I got sick, my husband of 24 years turned 40 and began a midlife crisis. Full blown. He's only got one foot left in the door and I don't know how long that's gonna last. Other than that, my family, to include two sisters, a brother, and my two parents are always there for me. At times, they'll make remarks that I'm sure everyone's heard, like if I tried a little harder, I could do more. Or that I've CONVINCED myself that I don't feel as well as I should. Or ,my favorite, the stress in my life has caused the mg. Believe me, I've had more than my share of heartache in my life, but so have millions of others, and it didn't give them mg did it? My husband's always told me if I drank more water and exercised more, I'd be cured. I've learned not to argue with these people (friends included), just smile and change the subject. And don't even get me started on their philosophy of my meds. As for help around the house, the boys (23 and 24) do help out, but it's like when they live at home, they turn 10 years old again. I have a really hard time asking for help. I just can't do it. My mom was coming over one morning a week during the winter to dust vacuum and mop, but I made her take money, so she quit coming. :) We live in a large old country home on 5 acres. I don't ever want to leave, but sometimes an efficiency apartment on the ground floor sounds mighty inviting! That's it in a nutshell.

Well, anyway, so that this post will actually be about something MEDICAL, was anyone else a sickly child? My dad was military, and I grew up in the 70's, so I saw a new doctor every time my mom took me, and they just blew it off. Medical records were lost during a move, so can't look at any test results
if there were any. I would have monthly bouts of horrible fatigue, sometimes fever. My siblings only confided to me lately that they all thought I was going to die! They say they already had my toys divied up. These stopped about the time I entered high school. Just thought I'd throw it out there.

Thanks again, Erin, and everyone else. Don't know what I'd do without this community. It still amazes me when I see responses to my questions! It's a special place.

Connie, You need a neurologist to order a "good" tilt table test or autonomic testing. You should probably have the autonomic testing where the tilt table test is only one part of it. Specialized centers do that. Do you live near a University of somewhere like that? Just ask your "new" neuro to help you out. Your situation is dangerous and you need someone to help you as soon as you can. A BP cuff can be gotten anywhere, like Walmart or Walgreens. A good brand like Omron is the best to get.

Annemarie, I'm sorry things are so tough for you. Maybe your husband needs some "health care!" ;) You're right, Erin is so perky and upbeat that it really does help. Thanks, Erin. I just don't usually have the energy to be like that - though I'm always feeling positive.

Annie