Now What?

[DESPERATE DEB]

Thanks to all of you who replied to my last post today .

I feel really upset and disappointed today. I waited three weeks for this appointment with a new doctor at the practice. The other doctors I have seen, especially my regular GP, has been so rude and unhelpful and this new one seemed like she was one who would actually listen. On helpful advice from this site, this time I went there armed with all the info I could find, highlighting the symptoms that applied to me (which were almost all of them!). Also a carefully written diary of my blood pressure this week, which I thought was actually quite low each day, average being 100/60 dropping to 90/50 standing. My heart rate has been about 60 every time, sitting or standing while I have been monitoring it but then when I am monitoring has never been a time when I was at the point of passing out! (obviously). Saturday evening while just doing some cooking I actually felt really bad, pain in my chest and my heart felt like it was pounding (out of nowhere) as if I was excited about something or scared. Really strange and it wouldn't stop. It started with what felt like my feet and legs were really itching and tingling then I could hardly breathe. I went and sat down for about 20 mins and thought I'd take my bp and my bp was about 100/50 but my HR which is normally only ever about 60 was 99 after resting so I don't know what it had been earlier. This happened about three times during the evening while I was lying down. It just kept racing followed by palpitations.

I told her all of this today and that it had been happening since last July and she said well it appears fine today. Then the dreaded question which always follows: "are you stressed about anything at the moment?" I felt like wringing her neck! This is what I have had since last year. I said the only stress I have is trying to find out what the **** is wrong with me and if I am asked that question once more I would explode.

I asked her if she would refer me for tilt table test etc as she obviously didn't know anything about this. She said she is not allowed to as she has to have a meeting with my regular GP because he is more senior! which is the one that thinks I am crazy. Maybe I should not have gone in there so optimistic! I came out of there and almost burst into tears at the sheer frustration. I just keep going round in circles. She wants to do some iron tests (again) when she can see on the machine that \I have been anaemic since I was 16! It has never made me feel this bad and I have felt like this whilst taking my iron. If I had the money, I'd just go private but now I have to wait to see if my doctor decides to" let "me have a tilt table test!

Is there anything else I can do but just wait for a decision?

[TheLivingDead]

sorry about your day. i havent been able to see any doctors since my diagnosis of POTS. i will be starting soon and im gonna slap someone if they try that running around BS. i cant stand that they spend so much money and time of thier life to become a doctor just to pass it off every time becuase they dont know ****.

[DESPERATE DEB]

sorry about your day. i havent been able to see any doctors since my diagnosis of POTS. i will be starting soon and im gonna slap someone if they try that running around BS. i cant stand that they spend so much money and time of thier life to become a doctor just to pass it off every time becuase they dont know ****.

Thanks for your reply. This has been probably about my 20th visit to the docs since last July including all the blood tests and now I have done the legwork for them and think I have found what is wrong they have to make a decision to let me be tested for it! I could quite cheerfully hurt them when they ask if I am stressed about anything. I think if I keeled over and passed out in front of them they'd find an excuse rather than concede that something was actually wrong with me.

I seriously wish you all the luck in the world getting some help now you have the diagnosis. Luck shouldn't come into it but keep in touch and let us know how it goes for you.

[lieze]

I'm sorry you're struggling there.

Maybe it would help to let them check your iron if it is low and see if they can help you out with that. I know my doctor tested my B12 levels and folate levels and they were both normal.

I'm not sure what mine is but with my heavy periods I think I battle constantly to keep it normal. And I am quite sure it makes our POTS worse.

So it is something to be concerned about.

My doctor was all over the tilt table test and I didn't want to submit to the torture.

Could I just do a carnival ride instead?

lieze

[arizona girl]

Deb, how much time have you done researching on dinet's main page? If you go to the Pots place section on the left, you will see causes, click on that and a list of causes for pots will pop up.

Dysautonomia or pots is a set of symptoms that are caused by something else. Say you have a positive tilt table and get a pots diagnosis, that is not the final diagnosis because then you will have to find out why you have it.

You may be a head of the game already because anemia is one of the causes of pots. It is right there listed under causes. A friend of mine ended up having an ablation for her high heart rate and it turned out it was being caused by her anemia due to massive monthly menstrual bleeds. She had a hysterectomy to stop the bleeding and is now much better.

I myself have it due to small fiber autonomic neuropathy. While knowing that is great we still don't know what has caused the neuropathy and are assuming it is autoimmune. So I am having plasmapheresis to see if antibodies are causing it.

There are a lot of people here that have it because they have EDS or joint hypermobility. The fact that you already know your anemic may be why this is happening to you. So don't just blow it off!

Hope this helps you.

[DESPERATE DEB]

I'm sorry you're struggling there.

Maybe it would help to let them check your iron if it is low and see if they can help you out with that. I know my doctor tested my B12 levels and folate levels and they were both normal.

I'm not sure what mine is but with my heavy periods I think I battle constantly to keep it normal. And I am quite sure it makes our POTS worse.

So it is something to be concerned about.

My doctor was all over the tilt table test and I didn't want to submit to the torture.

Could I just do a carnival ride instead?

lieze

Hi Lieze,

Thanks for your reply. Yes I am booked in for the blood test tomorrow and I can almost predict what the result will be because it is always low. They will prescribe iron, which I take but then it goes down again. It's been going on since I was a teenager. I hadn't thought about it that way before = that it makes the POTS worse though. The next post from Arizona makes sense too. I really haven't been researching very well. I think I have just been feeling so bad and then the docs have made me so angry that I am not thinking straight anymore. Having said that, I still felt terrible when I was taking the last lot of iron. Thanks for your help and its not the first time you've helped me either I will post my result as soon as I get it - normally a week or so.

By the way, your reference to the carnival ride made me laugh!

[flop]

Hi Deb,

I know that often GPs like to have one doctor in charge of your care, maybe if you like today's dr better than your regular gp you can switch to seeing her. Once she knows you a little better she may be happier to make decisions without going back to the other dr?

In the UK there are only certain tests that GPs can request directly (for example they usually can't ask for a CT or MRI that request has to come from a hospital consultant). I think that a TTT would be the same, rather than asking for a tilt test you may do better asking for a second opinion from a specialist. Many of us start out by seeing a cardiologist and as you are having fast heart rates and palpitations it would seem resonable to ask to see a cardio.

In London Prof Mathias (neurologist) is good for getting testing and a diagnosis but he is more interested in research so not so good for ongoing treatment.

Flop