Update on Dr. appointment

[DSM3KIDZ]

I saw my neurologist this week and she took my orthostatics and said they were good.........that my POTS is pretty mild. I was hoping she would address my hr issue which I feel is adding to my stomach problems. But instead she scheduled me for update in 2 months.

That's all fine and dandy but last month she said my orthostatics were as bad as they were when I first got sick. So obviously they alter.

I guess I was upset because she said my pots is mild, not that I want them to be bad but I've been really symptomatic lately and don't want her to just brush it off.

My standing hr was 100. Is that normal?

I guess I'll just wait the two months and see what happens.

I think I'm just venting because I'm mad about this illness tonight. This bears such a weight on my shoulders, I just want to feel carefree again. Know what I mean?

Thanks for listening

Dayna

[Jacquie802]

Ohhh the carefree days....can barely remember them! I know what you mean about the POTS being mild...it just seems like when you're at your worst the docs seem to think you are doing good...Go figure! I don't think anyone can truely understand this whole POTS thing unless they have it.

Hope you start feeling better!

Jacquie

[Guest Belinda]

I undrstand completely...normally my heart rate is 90-100..I think it depends on the person. Lately ity has been lower..but Let's just hope your neuro is o the all and maybe you can start feeling the results of good stats??

Take care..Belinda

[dianaD]

I understand completely what you are talking about!! I think that this disease involves SOOO much more than just OI, so if they are looking at that to see how you are doing, they are only seeing a tiny portion of the condition.

I think when all is figured out, they will discover that POTS is not just a postural problem, but OI is just one aspect of many aspects of this dysautonomia.

Ever since I went on minocycline, my OI is vastly improved, as is my tremulousness and over responsiveness. Im starting to believe that I could possibly pass a TTT if it was taken in the morning. But wait until the afternoon, and I get much worse, with pain near my diaphragm, difficulty breathing, wheezing, gastroparesis, bloating, visual disturbances, blah, blah, blah.

I'd be tempted to say something like, "Well, my OI is better at this point in time, but can change, and my other symptoms of dysautonomia are still debilitating. So, what can be done?"

Good luck, and know that you are not alone!

Diana

[Ernie]

Hi,

Yeah, I know what you mean. My cardiiologist told me last week that I was not that sick and that he did not believe that I needed a wheelchair. That's because he saw me walk 50 feet to get in his office (I wanted to show him that I had improved). When he told me that on the phone he did not know that I had fainted getting off my wheelchair to get in the car after my appointment with him. I did not bother to tell him either because I have decided to change doctor.

[Lulu]

good for you, ernie!

i hope you find a more sensitive and knowledgeable doc! i know what the other posters are talking about, too. i'm as symptomatic as i've ever been, but my orthostatics are fine and my vitals are fine. so i guess nothing is wrong........

with all the heavy duty heart meds i take, i don't think i could convince any doctor that i have hypertension or hyperadrenergic anything.....but i do! that's why i take the meds, duh! my BP used to run 180-200/100-120 now it's a steady one-teenish over seventy something. HR used to be in the upper 90's-120's just to say "hi" now my HR is in the 50's. i don't know what the freak is going on anymore. my body has started a coup.

i agree that our conditions are so sensitive that we change day to day and within a day. some people just really find this hard to understand....like why it's hard to get going in the morning or afternoon or whatever, but some other time that same day i feel fine! but it's true!

like i said, you don't have to be crazy to have POTs, but it helps (or as Janine says, you will be crazy eventually!) i want to be carefree again, and not have to be on ativan to get there. good luck, dayna! (and everyone else, too!)

love and light,

lulu

[futurehope]

My neuro who sees me every four months noticed on prior visits that I "wasn't that bad". This past visit he noticed my vitals were worse "than usual" and acted really surprised?!

Whereupon I said, "I'm having a bad day."

It's almost as if they want to think you've improved, and then are totally confused when you're not doing well again.

We all know. We change hour to hour and day to day and just taking HR and BP does NOT describe how this condition affects us.

Obviously, people without this condition do not necessarily "get it". Even when we hope they do.

[taylortotmom]

I think most of us can relate to what you said. It's so frustrating because sometimes when we feel our worst our vitals and other "verifiable" objective signs are okay and then other times we may feel okay but our numbers might be way off. There just isn't a rhyme or reason to all this sometimes. So, I can't offer any advice just some support. It stinks- royally.

Carmen