POTS diagnosis at LAST!

[persephone]

Hi everyone, I want to say a big thankyou to you all because i went to see Professor Mathias today in London and he was lovely. He says I have NCS, POTS, and EDS. i'm going back for more testing, but I feel so relieved just for having some answers, you know?

Atleast I know I'm not nuts! I would never have known this doctor existed if it weren't for this website, and I certainly wouldn't have had the courage to get the train to London and see him, were it not for the encouragement and kindness I've encountered on this forum.

I came up with the idea of sending an email with a list of symptoms before the consultation, so that I wouldn't have to sit and rhyme off the same old stuff in the actual meeting. That was the best thing I could have done because he'd read it all before I got in so he was able to sak me about other things. Like the fac t I'm double jointed and used to be gymnast, the fac t I'm always cold, that sort of thing.

How terrifying is it though tha tI have proved wrong three cardiologists and another neurologist and I haven't studied any biology since I was 16? Yet I know more about my autonomic Nervous System than THEY blimmin' well do? Ben, you're right, mate, when you say "trust me, I'm not a Doctor." Except for Professor Mathias, because he is awesome

So thankyou once again, people!

[Gena]

Persephone,

I am so happy you had a great experience with your new doctor. Yes, the internet and this forum are truly a blessing! I know it's such a relief to get a diagnosis. And what a great idea to email your symptoms to him ahead of time. What a time saver that is, instead of having to take up so much during the appt. going over our litany of strange maladies! I hope he was able to provide some insight to your plan of treatment. It's great to have a doc on your side who know his stuff. Take care and keep us posted.

[Guest tearose]

It is soothing to hear some positive news!

That Professor Mathias has a good reputation so I am glad you have him on the medical team!

I hope you get all your questions answered, and that you create a treatment plan that gives you back a full happy life!

best regards, tearose

[Guest Mary from OH]

Isn't it scary when we get excited when we're diagnosed with something wrong with us??!!

But, I know EXACTLY what you mean!! I have, so many times, wanted to go back to some drs and say, SEE, I TOLD YOU I wasn't crazy!! YOU were the one who got your degree from a cereal box!!!!

I'm glad you were finally vindicated, but sad that you're now "officially" in all of our shoes...

Good luck in finding treatments that "work" for you!!

[yogini]

Congratulations on getting a diagnosis - that is really great! Hope you can get the testing you need soon.

[Ernie]

Congradulation for finally getting your diagnosis.

Ernie

[violahen]

Congratulations Persephone

I am so happy for you! Validation is such an important thing...especially when you are struggling with an illness like this.

I wish you all the best in your treatments.

(It took me 36 years to get an accurate diagnosis...I know how you feel!)

Kristen

[opus88]

Congrats, Persephone!

I know exactly what you mean - it is exciting to finally be able to say to the world, "See - I TOLD you there was something wrong with my BODY, not my mind!" I'd love to go back and throw that in the face of many doctors from my past!

Now you can move forward with a focus. How wonderful! Hope this leads you to many improved days!

[persephone]

Thanks everyone. After the initial relief I experienced, Im now really angry. It's like white rage that I'm experiencing. We're now making an official complaint against the hospital in Scotland where I was told I was nuts.

But the good news is, I can scrub my last term's work and go back to college and finish my time off properly.

The only thing is, the lovely people I was living with before Christmas are, I tihnk, going to be wary about having me back to stay with them. I was so very ill when I stayed with them, I'm sure they'd be petrified in case something else like that happened again. Any one got any ideas on how I should broach the topic with them? It's going to be nearly impossible for me to get accommodaqtion anywhere else as I'm nearly halfway through the academic year.

These people are the loveliest people ever, but when I said I wanted to come up for a party they were having this weekend, they said I they didn't want me to come incase I fainted, that they would spend the entire night worrying about me. They said I would be aliability to my friends, and basically a bit of a burden. Anyone got any ideas?

[Guest tearose]

Persephone, You are on a roll! Keep going forward!

Since you asked for opinions:

I think the best thing to do is to gather all your thoughts and make a "date" with these folks you lived with and have a long, informative discussion. Let them ask you about all their fears and you open up with all that is going on. If you don't at least try to alleviate their concerns it doesn't sound like they will get over it.

Keep an open mind. I do believe that even though it will be a bit hard to find, you will find another living situation if need be.

Try to believe that what is meant to be will happen! I do believe that anything you with an open heart and mind, integrity and truth, will only bring you to "good places".

Best wishes, tearose