Confused

[momwithsix]

Hello everyone...I was diagnosed with Pure Autonomic Failure but they aren't ruling out MSA. All of these diseases are so confusing because they all seem to have the same symptoms. Is there any one symptom that determines what you have? When I read about POTS, that's me...when I read about MSA, that's me... I'm not going to lie, it's so hard knowing that MSA could be in your future. I really try hard not to think about it, thank God for my semi--good days and try to stay strong on the lousy days...tho that doesn't always work. It makes me so sad when I see the worried look on my kid's face because I can't make it across the room without squatting or stumbling..I so miss doing just simple ordinary things, walks, cooking, working and yes...even cleaning! Tho I can still cook and clean but not like I use to. I am so very lucky to have the best husband in the world, but I still feel like a failure as a wife and mother. Sorry, didn't mean for this to turn into a boohoo session...I don't talk to too many people about the possibility that I have MSA, my husband insist I don't have it and I don't want people to know about it because I don't want people looking at me like I'm dying. OK, I think I will be done for now..thanks for listening!

[lieze]

Mom with six-hi

I have four kids so am going through similar things here.

I have such guilt! I get torn between feeling guilt, frustration, fear and anxiety for myself.

It's very difficult to sort it all out and I still don't know either what all this means for me.

Lately I seem better and able to do more but it's my mind that feels off.

Like I was just trying to clean up in the kids room and my 4 year old was being very ornry and all of a sudden I just felt my mind spinning as if I was going to go crazy. It was a scary feeling but I think I am back to my senses now.

Maybe it was just a type of sensory overload I couldn't get the sweeper to work and he was jumping and standing on it which made me think-no wonder! And next thing you know I just feel like I need to be hospitalized for a nervous breakdown.

So I still have a lot of questions about what's going on???

I was so active before wanting to have fun all the time and now I usually feel like I'm some where in a depression.

I'd love to talk to you about anything keep on posting.

[juliegee]

Hello everyone...I was diagnosed with Pure Autonomic Failure but they aren't ruling out MSA. All of these diseases are so confusing because they all seem to have the same symptoms. Is there any one symptom that determines what you have? When I read about POTS, that's me...when I read about MSA, that's me... I'm not going to lie, it's so hard knowing that MSA could be in your future. I really try hard not to think about it, thank God for my semi--good days and try to stay strong on the lousy days...tho that doesn't always work. It makes me so sad when I see the worried look on my kid's face because I can't make it across the room without squatting or stumbling..I so miss doing just simple ordinary things, walks, cooking, working and yes...even cleaning! Tho I can still cook and clean but not like I use to. I am so very lucky to have the best husband in the world, but I still feel like a failure as a wife and mother. Sorry, didn't mean for this to turn into a boohoo session...I don't talk to too many people about the possibility that I have MSA, my husband insist I don't have it and I don't want people to know about it because I don't want people looking at me like I'm dying. OK, I think I will be done for now..thanks for listening!

Welcome,

Oh dear, if I had six children I'd be confused too One totally befuddles me.

Try not to worry. I have had every symptom of PAF, and many of MSA during bad bouts....and I'm pretty darn functional now- with my meds & certain precautions. Diagnosing autonomic dysfunctions is far from an exact science. And, most of us have symptoms that wax and wane. For me, finding out WHAT was causing my autonomic irregularities- helped me target my treatment.

It can get better & does not necessarily progress into a debilitative disease. You're not alone & chances are you'll figure out a regimen that will help.

Hugs-

Julie

[Sarah4444]

I don't know exactly what lets them know it's "just" POTS versus whether it's POTS on the way to something worse like MSA. I was first referred for evaluation for MSA, so I know how scared you feel, but was recently diagnosed by tilt table test with POTS. I also seem to very gradually be doing a bit better since starting treatment, but it's incredibly slow and variable, and so hard on everyone.