DESPERATE DEB

Hi all, Been a while since I've visited the site. The last time I came on here I was battling with my GP to get me referred to see Dr Mathias in London. After months and months of arguing and pushing for a referal I got to see Dr Mathias last month I have never been so happy in so long because he actually knew what I was talking about and didn't make me feel like I was mad or worse still a hyperchondriac. He said he thinks he can help me and have to go in for a couple of days's testing. Seems mad to be so excited that you have found what is wrong with you but as you will know, it makes you feel like that after so long and that there is some light at the end of the tunnel. Anyway, what I wanted to ask and I may have this all wrong (as usual) after I had my appointment I was looking on the internet and came accross something about adrenal something or other which is a kind of dysautonomia and that normally it goes hand in hand with gynae problems. Strangely enough All my problems started about two years ago, soon after emergency surgery on my ovarian tube. I had had a serious infection. Dr Mathias asked me about problems with birth and I had complications with both (which I won't bore you with) I didn't mention anything about the operation two years ago because I didn't think it was relevant. Does anyone think I should have mentioned this? Do I have my facts right about adrenal and gynae problems? To make matters worse I have ongoing gynae problems and seeing consultant in 2 weeks. Does anyone know what I am talking about?..... I don't

Hi everyone, Interesting question. I am based in London and on advice from another member on here, I took matters into my own hands and wrote to Professor Mathias myself. He replied personally as well as his PA and said based on my symptoms, I should ask my GP to refer me. Great! I was so pleased....... Called my GP just today and told him about it. He said he is not allowed to refer me to anywhere apart from local hospitals! He went on to say "in any case we can't just keep referring you willy nilly, we need to make a clinical decision" Which is exactly what I have been trying to get since last August! I really don't understand this and I have told him I am taking this further. I know that not everyone on here lives locally to Professor Mathias so I think this is just another fob off. I would love to say in answer to your question that this would be easy, and I hope it is for you. I feel like writing back to Professor Mathias and telling him I can't get referred. Good luck to you and anyone else in getting help with this. Take care. DD

Hi Mirry, The feeling that no-one is listening is common among most of us. The only advice I can give is what I decided this weekend. It is YOUR body. You know when something is wrong. Keep on and on until you get answers. If you be a GOOD patient and sit quietly you will definitely make their work easier and they will never give you a second thought when they go home at night. Meanwhile you're left suffering. It's you who has to live with the misery and worry about what is wrong. Get some answers even if you have to really push them. Take care X DD

Dear Bellamia, Thank you for taking the trouble to post the link. I have had a look at it and have done a bit of research myself too because to be honest I didn't really understand what ferritin was. I think the best thing I can do now is ask my gp for a print off of my results and go elsewhere. Like I said before, I have been going there almost a year now with the same problems and they seem reluctant to help me in any way. I don't understand why they won't send me for autonomic testing as I just want to get better. It's almost as if they are so busy trying to prove it's in my head that they have stopped becoming doctors. The lady that game me my results told me herself that the notes left on the test by the doctor was "await patient contact" which basically means just leave it unless I felt unwell and called for an appointment, I would never have known about it. This tells me they were hoping I would just "forget" I was feeling like death and leave them alone! Also, when this all really kicked in last year, I pushed and I mean PUSHED for B12 testing because I read about that too while trying to google my symptoms. The test was normal and when I asked what they thought it could be then, the doctor I saw then barked at me "look if you think you'll feel better, make an appointment and I'll give you a shot!" I made her feel really silly then and said "well if I don't need B12, why on earth would you do that?" It was her way of being sarcastic and nasty when all I wanted was an answer to why I felt so bad. Thank you so much for your kind words and those of everyone else on here. I think I would go mad if I didn't get to speak to other people about this. Take care everyone xx DD

So pleased to see you have found someone that knows what he is doing and hopefully you will start feeling a lot better soon x DD

I can definitely relate. I can't even lock the door on the bathroom anymore and actually take my phone in there with me just in case I have to ring someone in the house because I can't shout out to them! I get nervous when I'm out in case it happens and sometimes I think I will actually bring it on just by keep worrying about it. I really feel for anyone who has this phobia because it really affects my whole life now. I want to go back to work and am worried that I'll start work and won't be able to keep it up or if I fainted at work then they wouldn't keep me. I have now found a place where hopefully I can get some work at home which would suit me much better. Hope you all have a "good" day today xx

Hi Nikki, Thanks for your reply. How awful that I'm happy someone else feels so bad just because it means I'm not alone

Hi BellaMia, Thanks for your post. I think my GP is doing the normal CBC so if that is my problem as well, then this will not show up. Funnily enough this has been going on for years and although it always shows up anaemic, it is never severe enough for me to be feeling so bad and they are always puzzled that I feel so bad. Maybe it's something to do with the ferritin then. I wonder whether the GP can run these tests or whether I have to be referred. I like the sound of these molasses I'll have anything to feel better.

Rene, I hope you feel better really soon. My thoughts are with you x DD

Hi everyone, Haven't been on here for over a week and thought I'd come and have a look how you are all doing. The worst thing about this is that there is such a lack of recognition of this horrible thing and it is always such a long wait to find out what is wrong. I'm still waiting for blood test results for anaemia because as you will know GP's don't and won't try and understand that it could be anything more until they send me for testing which they don't really think is necessary!!! I have been anaemic most of my life and I know I have never been here before. What is driving me mad at the moment is these horrid "waves" of weakness that seem to go through me at any time of the day where I feel like I just want to lie down and hold my legs. I feel like I'm trembling inside and everything that moves makes me jump out of my skin. Even a page turning can feel like an electric shock to me at the moment. I really am fed up with it and thought I'd let off some steam. Does anyone else feel really jumpy at times or feel like you want to shake your arms or legs to get rid of the horrid achy, shaky feelings? I think if I had the energy I'd be a great dancer the way I feel at the moment I get shivers through my body for no reason or I'll go to the other extreme of feeling so hot I feel I'll explode.

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!

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.

Hi McBlonde, Yes I do but I thought it was due to the fact that I am always standing when on the phone. So strange because now you mention that I realise that this has been going on a lot longer than I thought (which was about last July) when the fainting started. I remember a lot earlier than that when I would put off phone calls because I thought I'd get breathless and dizzy. Sometimes I'd dread people asking me how I was as if I talked about what was going on it could start it off! Thank goodness this site is here and I don't feel so weird anymore

Definitely! I can't believe it. I must show this to my mum. I was only saying this the other day to my mum. I definitely feel lightheaded after I have been laughing or shouting at the kids! Sometimes I feel like I can't be bothered to talk afterwards and just sit there quietly smiling and feeling like I'm not part of the conversation until it passes. Thanks for mentioning this because sometimes I feel like I'm "exaggerating" or being "dramatic" about the way I feel at times.

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?

Please can as many of you POTS people answer this one question:- Does your blood pressure drop when you stand every time and every day or do you have times when your blood pressure is normal going from sitting to standing? The reason I ask is that because my blood pressure didn't drop today when I stood up my GP has said it can't really be POTS.

Firstly, I'm sorry to read about the **** you're going through at the moment. I have still not been diagnosed but I found this so interesting because, although I had had occasional unexplained weakness and chest pain and near fainting, my problems worsened and became more frequent immediately after surgery I had in November 2008. It's so strange because I couldn't see any connection to the surgery but when I had to think of a time when it had all started I always said it was after the surgery. Now I'm wondering if that was the cause. It's all gone downhill since then and it took me so long to get back to normal afterwards and my consultant found it strange that I should have been feeling so awful. Christmas was a blur for me and I couldn't even do my own shopping until January! He said I was just run down and people do get like that after surgery, of course, I just went along with that. I have learned a valuable lesson since then - never just take a doctor's word for it and never assume they know best. Not referring to the consultant of course as he wouldn't have known anything apart from what I went in hospital for. I'm referring to my GP who has actually made my life a misery and made me feel like I was mad! Thank God for this site is all I can say. Best wishes to you. Deb x

Ha ha ha. I look like a shuddering smurf! By the way my post was headed "another weird thing" and I was feeling like a weird thing because nobody responded

Hi Daisy, I feel horrid to say this but I was pleased to see your post about this! I did a post about this last week. I have this really bad, sometimes its like a tingling but sometimes its like a shivering in my head and at times it goes right through my body and I feel like I shudder for no reason. I am warm and not in any draughts or anything and it drives me crazy sometimes. I sometimes I feel like I want to rub my head for it to go away. Nobody answered my post so I thought I was the only one. I am not on any medication yet as I haven't had a diagnosis yet. Oh yes, and definitely more so on standing.

Hi and welcome! I read your other post too. Did you have to monitor your blood pressure at home before seeing a doc? If you were having a good day, did your readings come out normal or "potsy" I am having a couple of good days and am supposed to be monitoring it to take to see doc. I have a horrid feeling they will come out normal and I won't get referred to a neurologist. Don't get me wrong, it would be wonderful if they all came out normal, but then it wouldn't explain why I feel so awful at other times. It's a confusing question but I just wondered what others' readings were when they were having a good day? Thanks. Deb x

Hi Elfie, Your post made me laugh! I felt like a freak for complaining about taking my blood pressure. That is exactly what I do too - hold my breath when I take it because it hurts so much. Probably haven't been accurate readings at all. It's just if I don't get them done I won't have anything to show the new doc and she probably won't refer me and draw the same conclusions as the rest = that I'm a crazy woman making it all up out of boredom! Thanks for your reply. Deb x

Congratulations x

Hi Ajw, Thanks for your reply. I followed instructions carefully (it says to be able to fit two fingers under cuff). I tried it like that and it hurt so I loosened it. Maybe too loose like you say. I will try this again

Hello everyone, On some great advice from the members on here, I invested in a blood pressure monitor. I was very careful to make sure I had the right cuff size etc. I put the cuff on as loosely as it can be without it slipping down my arm and whichever arm I try it on, it hurts so much when I take my blood pressure I feel like my arm's going to explode and end up numb for ages after! I have tried it a few times now and I really can't work out why it does this. I was hoping to get a record of readings written up for my appointment next week but I don't think I can do this anymore. Anyone think of why this could be? I know the cuff's not too small as it's quite loose. My other question is, and it's probably a silly one, but if you have POTS would you be symptomatic all day every day because mine doesn't happen like this. The readings I have managed to do haven't been too alarming either but I have been feeling a bit better the last few days anyway. When I'm symptomatic it really is bad and I cannot even go out but then I have 'okay' days. My question is would the readings only be high readings if I was feeling unwell? If I managed to keep up the readings and they were okay for over 3 days, would that mean that it couldn't be POTS and must be something else? Also how else can I take the readings without a cuff? In the past, when I remember having my pressure done at the GP's office, it never hurt like this but obviously I won't be able to go there every day to get it done.