Is it worth it?

[penguin2]

I'm in the US, and I am 99% certain I have POTS based on all my symptoms, and the sustained HR increase of 30+bpm upon standing.. I have been tested at neurology until I was blue in the face and all the "scary" stuff had been ruled out. (I say scary because that is how my doctors have worded it, even though these symptoms have been VERY SCARY for me!) I had to push to be seen by a cardiologist familiar with the condition, and that appointment is now coming up in a few weeks. My plan was basically to tell him all my symptoms, that I think POTS would cause these things, but that I'm not sure and ask what his thoughts are.

Here's my issue: Now that I've gotten the appointment and I feel confident I'll get a diagnosis with this approach, I don't know if I want it. I don't plan to medicate, as I generally react poorly to pharmaceutical medications.. I am a business owner, which means if I ever need insurance such as disability insurance, long term care insurance, or even life insurance, a diagnosis may make it difficult, cost prohibitive, or impossible to qualify for. I'm also concerned about being "labelled" by the medical industry and then having even more issues dealing with my doctors after diagnosis. Since I plan to treat this naturally on my own, I'm asking myself: "is it even worth it to continue seeking a diagnosis?"

I'm curious if anyone has had any more problems since diagnosis compared to before diagnosis and if anyone regretted getting diagnosed? I'm also curious if anyone thinks it was very well worth it to get the diagnosis and if it's made things better or easier in another way I'm not thinking of? I'm just torn on if I should keep my next appointment or not, and would appreciate real-life examples of if it is worth it or not.

**Not asking for advice on what I should do in my situation, just curious of other people's experiences so I can make a well-informed decision for myself.**

[Xanna]

I understand how you feel.  That is an issue I am also struggling with.  I have had primary progressive Multiple Sclerosis for 27 years. It is the most aggressive form of the disease.  It has only been in recent years they even had a medication for it.  I have only used muscle relaxers sporadically and use cannabis as my primary medication, diet and yoga for my MS.  As with Dysautonomia, doctors do not understand either condition.   Since I cannot find a doctor to advise me on what to do, I am going to do my own research and be my own advocate/doctor.  I have no choice in this matter.  I cannot find a doctor that will see me for atleast a year. If I were you I would keep the appointment to ask any questions you have and base your decision on their answers.  You are very fortunate to have a doctor that you can get in to see. In the end, you need to do what makes you comfortable. 

 

 

 

 

[Pistol]

@penguin2 - I am glad that I got my diagnosis, after years of being ignored and mistreated by uninformed physicians. Having a diagnosis of dysautonomia is not a death sentence and does not mean you have to go on disability. I know more functional POTS patients than disabled ones. The thing is that with dysautonomia you need special treatment for procedures that require anesthesia, you may be medication ( and supplement ) sensitive and should remind your providers to start you on the lowest dose of any new med or supplement. You may find that viral illnesses or even a cold or allergies can make your symptoms worse, and having a diagnosis would explain that. 

Regarding your concerns of a chronic illness affecting you financially - POTS is not a diagnosis that is considered life threatening, and it should not affect you applying for insurances. Most patients with POTS function just fine, and many improve as well. 

The decision is yours but I can tell you from my personal experience that all medical providers are extra careful with me because they understand that with this diagnosis I can easily become unstable. If they would not know about my diagnosis they would not know to take precautions. 

[MomtoGiuliana]

I was glad to have a diagnosis bc it helped me to make better decisions about my health.  It has also been helpful to see a specialist and for him to order IV fluids when I have bad flare ups.  Without the diagnosis or that relationship, care would be a lot harder.

[miraclewhip22]

I smoke 4-5 cigarettes a day and it actually helps, ashamed to admit. 

Not a pharmaceutical so I thought I'd mention.