Waiting for diagnisis

 

Tara

I'm guessing he's started on 12.5/50 or 62.5 if that's the case then it's the usual standard low starting dose spaced out through the day, to be gentle &kind on your husbands body, Sinemet or Madopar is quite usual too start on these days,  they'll prob monitor the effect for a few weeks and then build up if required, there maybe a little nausea too start with but it usually passes within a few days.

Thank you for your reply Sea angler, I have been using this site for a while and have found out lots! I am hoping my husband will join in too. 

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.  

Hello Tara,

I read your post and I know exactly how you feel as I feel the same way. I too as your probably gather if you have read my post above, I worry and part of me feels sure I am on medication too soon. I have found I have felt more unwell and had more pd symptoms since being on the pd medication. But its all fairly new to me. I have heard so many things from so many people regarding it. Some say it takes at least 4months before it all settles down and you feel the benefits! I will just be starting my 5th month of the Madapar. I take the same dosage as your husband.

I hope he gets on well with it Tara, and look forward to hearing how you both are finding it and I hope it makes things much better for him.

It takes me time to sometimes get on here, as i'm just hopless at using the forum. I often want to send a friend a private message but don't seem to know how too! When I go to my account and it says I have new post I can never find them even though I click onto them. So hopefully I will find your reply if you leave one.

Take care of yourselves and I wish your husband well.
Autumnleaves

Hi Autumnleaves, 

thank you for a reply, my husband started taking the madopar yesterday. He was off on holiday and started back nightshift last night. 

He was still concerned about taking them but as well as the PD he has also been diagnosed with arthritis in both his hips and we thought that this was maybe due to the way he walks, as he does get sore. 

Hes had an MRI scan and also a datscan which led to his diagnosis so I'm wondering if they maybe put him on this medication to further confirm his diagnosis, we have an appointment with who I assumed was the PD nurse the second week in June to discuss our concerns but I'm not sure if there will be any improvement by then, I'm not sure how soon the meds become effective. they will maybe discuss other options with him then as so far if I hadn't been looking on this site or the internet we would know nothing of side effects etc. The neurologist Sent us away to do our research online, I am very much  of the mindset  that you can't know enough information where as my husband would rather not know! So I am gathering all of this and telling him anyway. 

Hope you are well also Autumnleaves, thank you again

Tara x

Hello again Tara,

Its nice to hear from you and I do hope your husband starts to feel much better and find some relief and see a difference now he has started the Madapar.

It was the same for me Tara Xmas eve when I was diaganosed, I wasn't told much at all just advised to go on line and then told I would be receiving a home visit appointment from the pd nurse, which I didn't I had to go to her office which was a rented house and she only had a time limit of 30mins with me. That's not long Tara is it when your new to an illness and are shocked as well to hear you have as I had no real symptoms apart from my balance was just abit off when walking. And as I sad in my previous post I have for the past four years felt unwell with infection after infection and did lose weight drastically. Whether they are symptoms of it I don't know.  Having read what the side affects of Amitripline can cause i'm more inclined to think it could have been them that caused all my health issues over the past four years, as I was put on it then, and that's when they started!

I now still taking 3 Madapar aday and being put back on Amitipline to help with my anxiety and depression. I'm not happy with it all though, as i've only become so depressed and anxiouse because of feeling so unwell every day, which I have since taking the Madapar. I truly wish your husband every success on the medication though Tara, it does seem to help a lot of people.  I have strong feelings that I have been put on medication far too soon.

I have heard of this Datscan. I have not been offered one though. I did have an MRI which i'm only assuming confirms that I do have Parkinkson's? I was put on the medication though two months before having the scan. It does and will continue to worry me that they have been too hasty with my diagonise. 

I really wish your husband much good luck Tara and you also, it must all be a worry for you too. Lets hope he starts to feel some relief. Like you I am so grateful to the people on this site for their advice and friendship. I  would say you are welcome to send me a private message if you wish to Tara, but to be honest i'm still after nearly five months not great at finding things on here. Its showing I have four new post on my account, but I haven't found them.

You both take care, best wishes Autumnleaves. xx

Hi Betty Blue

Sorry for the delay in responding. My current dosage is 2 x 100mg tablets of Madopar 3 times a day, but it does not seem to suppress the tremor. Some days good,some days bad, very annoying.

I have an appointment with my Neurologist at QA Hospital, Portsmouth on Wednesday,so will see what he says.

I have no other symptoms of PD, just the Tremor. How about you?

Take care,

Mick 

I am afraid i have more than tremor i have painful stiff joints restless legs a mobility problems and i am on  4 different types of tablets for just my pd then there is the high blood pressure tablets another three then because my sleep pattern is so badly effected by my pd med's there is a sleeper. BUT i am a fighter i call my pd the b**** and it will not win!! if your tabs are not controlling the tremor  i would ask your Neuro about the possibility of trying another medication I have never heard of madopar being so ineffective.

let me know how you get on xx

Hello Hawkeye

I hope you have seen your Neuro by now & things have improved for you. Hoping your finding the Madapar better now or you have been offered another medication. Take care.

 

 

Hello Bettyblue,

 Just to say hi, I really hope alls well with you. I hope your symptons aren't being too bad right now & your medication is helping. You have a lot to deal with,  but such a great attitude & strength. You have given alot of people encouragement too. Take care my friend. xx

Hi Autumnleaves,

sorry i have not txt back been so busy job hunting which usually results with a knock back, i don't really know how i am managing somehow, by 8.30 i am wiped out probably as i am under medicated at mo i see Neuro today. Hopefully he can sort drugs out for me, never thought i would hear myself say i actually want more pills but suppose it is inevitable. Glad the summers hear at last and Hunstanton is weather depending.

 

Speak soon xx  BB.

Hi again Bettyblue,

No worries hun about texting or anything. I just wanted to say hi to you. Bless you it must be so draining for you right now. I am thinking of you. I know your post earlier said about how you were feeling & how much meds you were on. I'm hoping by the time you see this you have seen your  Neuro & things get made easier for you. Also you can manage to get some good quality sleep of a night. Doing all what you do, & having to cope with what you are too is hard enough without not getting a good night sleep.

Don't worry hun about replying or texting I more then understand, & if I txt its just to say hi & keep in touch with you, never worry about replies. You have more going on then I do atmo.

Filling out application forms & job hunting is a dam job in itself, & I can imagine just how much its taking it out of you right now.  It makes it all so much worse too when you've put so much energy & time in to it  then just get blimeny knock backs.   

Lets hope things get better & hopefully Hunstanton may be on for you. Obviously you need to feel ok within yourself. Getting sorted & you feeling ok more important then anything else is right now. I'm thinking of you lovely & will be in touch soon again. (as said no worries about replies, your busy I know) Take lots of care of you!!!!

Autumnleaves xxx

Well my Tremor is no worse or better...nor do i suffer from any other PD symptoms. I have been taking Co-Beneldopa 25mg/100mg capsules 2, three times a day with no apparent benefits. Its mostly a resting tremor.

However, being anxious and stressed does make my tremor worse, but physical activity which I undertake regularly does seem to work.

Hope everyone is remaining positive

I am cool Hawkeye16 you to I hope xx

Nice to hear from you, take care xx

 

Hawkeye16,

I have a aunt and a uncle living in Portsmouth who I am planning on visiting in Nov as that is your hospital I am assuming you live around there if I visit them would you like to meet for a drink Then any further question you have maybe I can help you out with, My local hospital has asked me to be expert patient consultant as I am focused on learning as much as I can about this pesky condition we have.

 

BB

Hi Karen


Yes Karen, I am trying to learn as much as I can about this 'pesky' condition too. I live in Southsea and would love to meet you for a coffee or tea so we can swap notes! 


Take care


Mick


 


[This post has been edited by the moderator to remove personal information]


Hi I will let you know closer to the weekend when I am coming down and I will private message you my mobile number.

There is a free course called good brain bad brain Parkinson through www.futurelearn.co.uk

 

well worth looking up I got 84% really proud of that.

 

take care Karen. 

Hi Karen

Ok I shall take a look at that website.

Look forward to hearing from you soon.

Take good care x

 

Good Morning, this is my first post. My OH is waiting to see the specialist neurology consultant, we have been given an appt for 26 January, is a wait like this normal?