Hello again Sea angler,
Sorry for late reply & thank you for your advice. Just to make things better I have had a stomach bug all over the bank holiday! I am almost at the end of my tether with it all lately! Hence just on now replying
I had a call from my Consultant this morning regarding the Madapar. I rang his secretary to ask if I could come right off everything for a time just to see how I get on, then review things & if need be start again on the Madapar (but just the 3 aday as that's all I would need! I know I didn't feel good upping it to 6! Or if I should need medication perhaps even try me on a different one. I told him I am fed up now with feeling unwell everyday, no sleep, hot flushes, bad mouth ulcers & I seem to now have pd symptoms that I never had when he diagnosed me in December!! All I had was a balance problem whilst walking, I was inclined to be a little like someone who had had rather too much to drink!!. Just didn't seem to be able to walk straight! Nothing really other then that. I have for the past four years, had a lot of infections, lost over a stone in 4 weeks with no explanation for it & did have a lot of back pain & just generally felt unwell. But I never would have put that down to pd. And my gps hadn't they in fact sent me to a Gastro Consultant who told me he suspected something else and has been checking me ever since then. So the pd diagnosis for me was totally out of the blue!
I know little about it hence i'm grateful to this site for the information it has given me, the support of the pd nurses on here is 2nd to none! And the friends on here you meet are so kind, and so always there! I have learnt a lot and felt supported by one friend in particular. She is so knowledgeable.
My concerns are and this may help Tara, (if she reads this) so many people I have spoken with including my pharmacy. But more so a private therapist I saw the other day to help me with the pains in my head etc. She did something called Cranial therapy! I think that is what its called! ("I'm a right one aren't I, having something & not sure of the name of it!") Anyway she tells me that she has 4 other pd clients, and they all have more mobility issues then myself and they all have been under going test for approx 6 months or so! She seemed to be under the impression that your not given a confirmation diagnosis until you have had lots of different test over a period of time!! Then your illness is or isn't confirmed and your not given medicine until that happens. She told me that she is amazed to hear I was diagnosed and prescribed meds after just a few test and during a short appointment. This also has made me think too, as my sister in law rang last night to say my brother had the same test as myself 4 weeks ago, and they have said he may have pd or it could be something else its hard to tell, he has to go back in 8 weeks time to be re-tested and they will probably keep checking him for some time before confirming his outcome. He hasn't been given medication either, and apparently my sis in law said he failed most of the test. Where as I didn't!!? This all plays on my mind!! Like Tara has said in her post, I am worried about being prescribed medication too soon!!
But back to my conversation today with my Consultant, he first agreed and said I could stop if I wanted too, but he didn't feel it would help my my anxiety?? I'm not anxious as such, i'm feeling unwell on it and fed up with it!!, and what's making me anxious a little is I am hardly feeling well enough to go out, i've been stuck indoors now for I don't know how long! Suffering from panic attacks as I have for a long time and overcome them in the past couple of years and just started to enjoy getting out doing what I want, i'm afraid staying in, they will return and all my hard work conquering them will be lost!! I told him this, but he seemed to keep on the anxiety path. (That's one thing I hate if you have suffered with anything such as anxiety or panics etc I personally feel you get labeled and am not sure your always seen as you want to be! He has suggested I stay on the 3 Madapar a day, as he feels I will be just as anxious if I come off it!!? And I go back on Ametriperline (think i'm spelling a few things wrong here, so do excuse me)! So that is my story today! I am staying with the Madapar for another month or so, going back on the anti depressant and then see how I feel then, if no better they are taking me off the Madapar to see how things are then!
I appreciate your post Sea angler, thank you for reading my long I know post. All advice is always so helpful though for all of us. We learn things from reading what others say.
It is annoying when so many people keep saying you shouldn't be on any meds yet or you should be tested more or moinitered longer before prescribed meds, but none of the people saying it would support you if you asked them to in front of your Consultant, and I feel uncomfortable questioning their decisions!
I hope your well Sea angler and all others that have taken time to read this no doubt boringly long post again. Take care Autumn leaves.