Back Again.

Bantaman010
Bantaman010 Member Posts: 15
edited 6. Oct 2015, 13:36 in Say Hello Archive
Hi all I was on the forum a couple of years ago but thought I was getting better so just tried to get on with life then surprise :shock: surprise I have lately been diagnosed with a disease called myasthenia gravis on top of my psa.
My psa is also getting worse as fingers stopped working totally, losing my grip in both hands and swelling feet, I could be mistaken for an oap from the back if it was not for my youthful looks :lol:
Anyway trying to be positive again so joined the forum to share stories with people who know how it feels to feel crap :island-shark:
I started working in a Hospital in March this year part time but I feel this is getting too much for me as the myasthenia is in my eyes mainly and this causes a thing called Diplopia ( double vision ) which is quite dodgy sometimes when working :o

Anyway would love to hear from anyone who wants a wee blether.
:cheers: John.

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hi John,

    Welcome back again to Arthritis Care Forums. As mods we are here to help with any problems you may have on the message boards.

    There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

    I look forward to seeing you posting on the boards.

    All best wishes

    L
  • stickywicket
    stickywicket Member Posts: 27,092
    edited 30. Nov -1, 00:00
    Hello John and welcome back though I'm so sorry that things have taken a turn for the worse.

    I'm afraid these autoimmune forms of arthritis can sometimes lull us into a false sense of security. As for myasthenia gravis – I've heard of it but that's about it. Not good, I'd say.

    It sounds as if you are going through the mill a bit. I hope we can help with support and a few laughs. Please join in anywhere. You'll be made welcome.
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    Hello John, and a warm welcome back. I'm so sorry you've now got additional problems, but here you can air them and we'll do our best to be supportive.

    Any time you feel like a wee blether we'll be here.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I thought I recognised the name - I am sorry you have had to return to our creaky fold and for such an unpleasant reason. I empathise with the PsA because that is one of my beasts; although I have heard of the other, I have no experience or knowledge of that condition. I can see how it would impact on your work, however, not a good thing to be happening to you.

    What meds are you taking for the PsA? I am on a triple therapy of injected meth, injected humira and sulphasalazine tablets but now have added OA in some very useful joints. DD
  • Bantaman010
    Bantaman010 Member Posts: 15
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Hello, I thought I recognised the name - I am sorry you have had to return to our creaky fold and for such an unpleasant reason. I empathise with the PsA because that is one of my beasts; although I have heard of the other, I have no experience or knowledge of that condition. I can see how it would impact on your work, however, not a good thing to be happening to you.

    What meds are you taking for the PsA? I am on a triple therapy of injected meth, injected humira and sulphasalazine tablets but now have added OA in some very useful joints. DD


    Thanks dreamdaisy I'm glad the creaky fold is here because as we all know when someone is moaning about their ailments ours are ten times worse so it's good to talk to people who really know how it really feels. :zombie2:

    I need to ask when I walk it feels like my knee joints are just clicking together and feel very dry. Weird I know. Has anyone else felt this?

    I am still only on Ibprofen and Paracetamol at the moment but like I said I thought it was going away but seemed to be getting worse in the last 2-3 months. Drs on Tuesday for blood :vampire: tests.
    My main medication is for the Myasthenia.The Myasthenia has put me in Hospital twice one of which was 7 days. I lost the ability to swallow which was quite scary. :horror-movie:
    It's the PsA that provides the pain though mainly in my feet, knees and shoulders. Plus my fingers are nice and fat and no longer bendy.
    :spider:
  • stickywicket
    stickywicket Member Posts: 27,092
    edited 30. Nov -1, 00:00
    Is there some medical reason for you not being on DMARDS for the PsA? I can see that there might be a clash with the Myasthenia meds though I've no idea what they are. If there's no reason why you shouldn't take DMARDS it would probably be much better if you did.

    No swallowing sounds very scary. I have to eat carefully due to the arthritis in my neck. I can soon start choking if I don't. So far not fatally :lol:
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    It's a shame but any form of arthritis doesn't go away, as such. It may lie dormant for a while but something will set it off and we are the ones who pay the physical price. My knees feel horrid, there's a sensation of heat in the middle of the joint because I am bone-one-bone so they are rubbing together the whole time, they are hot to the touch and they are very painful but that is thanks to the OA which was diagnosed in 2011. The PsA advertised for an assistant because it was struggling to wreck me all by itself, OA answered the ad and began shortly after. :wink:

    I'm surprised that you are not on any of the 'starter' meds for the PsA, the current thinking is to get in early and hit the beast hard with the meds in the hope that this will slow its progression to a decent (i.e. slower) speed but maybe they could clash with the others. How was it diagnosed? I was classed for four years as having an auto-immune-inflammatory arthritis, this label was changed in Oct. 2006 when my skin obliged with a bout of P on my soles and palms. The label changed but not the medication. DD
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    :spider: Hi John;
    Sorry you are worse and about the MG. I have PsA and often have the dry-knee feeling. I've had the clicking joint sounds for as long as I can remember. Long before I knew anything was wrong.

    Best wishes. How else does MG affect you?

    Anna
  • Bantaman010
    Bantaman010 Member Posts: 15
    edited 30. Nov -1, 00:00
    Thanks all for replying.

    What are DMARDS this is new to me?

    On top of PsA I have ocular Myasthenia 0.015% of the population in the UK have Myasthenia so even less have my condition. It was discovered by mistake as they thought I had a stroke as the right hand side of my face dropped and my eye closed. Now I suffer from double vision and when my body tries to correct my vision my neck and shoulder muscles take the beating. :zombie-cat:
    Went to visit our daughter today on her 19th birthday at Glasgow where she is at Uni and driving home was like being on a flying carpet :scary-spider: .

    I am one of those people who get to the Drs and say " no I'm fine in fact I think it's getting better" when some mornings I wake and think " what's the point ".
    I am booked in for light treatment for my scabby skin that when itchy requires loads of rubbing then some blood mopping as the skin peels away as it is very thin and starts weeping.

    Thanks Again John. :zombie2: Love these smilies.
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    DMARDS stands for "disease modifying anti-rheumatic drugs". I take two kinds, Plaquinel and methotrexate. They have helped a bit and, I recently started an anti-TNF called Enbrel. All are geared to check back an over-active immune system. That's a gross simplification of how they actually work (or don't, as for some of us :skull: ). I also look ~80 from the rear until you see the front :monster: :horror-movie:
  • stickywicket
    stickywicket Member Posts: 27,092
    edited 30. Nov -1, 00:00
    As Boomer says DMARDS are the meds normally prescribed for autoimmune types of arthritis. Ibuprofen and paracetamol won't do much for it. When do you next see your rheumatologist? I do get the “I'm OK, doc, thing” but, if you're not, it's better to tell it like it is. Otherwise they can't help. You don't need to lay it on with a trowel :wink: – just tell it as you've told us.

    That car journey sounds like the sort you'd pay for at a theme park :o (I trust you weren't driving :horror-movie: ) I think nausea would be on the cards for me. You must cope very well with it. Is that the stoic in you again :lol:
  • Bantaman010
    Bantaman010 Member Posts: 15
    edited 30. Nov -1, 00:00
    One thing I have not mentioned is my needle phobia. I had blood taken a couple of years ago after taking diazepam to calm me down and went private for the arthritis but I didn't go back for the injections they wanted to give me so I just plodded on then the myasthenia kicked in so I spent a year in the house with that.
    My needle phobia I now think has passed because when I was in the Hospital they put me on a drip and took blood every second day from me :vampire:
    I am at the Drs on Tuesday so will get him to take blood and then be referred to a specialist.:zombie-mummy:
    So I suppose I am really just starting with all the Arthritis malarky. The thing is some mornings I get up and I am more stiff than sore, does anyone else have this?

    Thanks John
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I start every day sore and stiff and end every day the same, if not a touch worse thanks to getting on with things during the day. The DMARDs are usually in tablet form so easy to take. Am I right in thinking that you haven't yet seen a rheumatologist? I apologise for being woolly-headed, I had my flu jab yesterday and that has added extra aches and soreness to the norm. DD
  • Bantaman010
    Bantaman010 Member Posts: 15
    edited 30. Nov -1, 00:00
    I saw a specialist a couple of years ago and that's when the injections were mentioned but I never went back. I have a terrible phobia of needles and as people love to say the injections are meant to be really painful :zombie-cat:
    I just kept taking painkillers.
    The good thing is that when I lie in my bed I have no pain at all so I sleep no problem.
    I am back to work tomorrow, I only work 5 hours a day so here's hoping.

    John
  • Bantaman010
    Bantaman010 Member Posts: 15
    edited 30. Nov -1, 00:00
    Boomer13 wrote:
    :spider: Hi John;
    Sorry you are worse and about the MG. I have PsA and often have the dry-knee feeling. I've had the clicking joint sounds for as long as I can remember. Long before I knew anything was wrong.

    Best wishes. How else does MG affect you?

    Anna

    Anna the MG is in my right eye I see double when tired or any time really. My right eye closes itself after a while when the medication wears off. I was in Hospital for a week when I lost the ability to swallow last month that was scary:zombie-cat:
    I get tired very easily and sleep any chance I get.

    John
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    UGH... sorry about the MG. My pain also improves when I lie down. I just can't make a full night's sleep because my back and neck insists I move. I also get extreme fatigue and have to lie down/sleep a lot. It's very heavy fatigue and hard to fight through, so I don't. Fighting it makes me get worse :horror-movie:

    I have a neuropathy along with the PsA but it hasn't be figured out yet. It was very active a few years ago and has settled down a lot. I still have nerve problems in my legs but it's not like it was :zombie2:

    Unfortunately, DMARDS come with monthly, or less frequent for some, blood draws to monitor liver function, etc.
  • Bantaman010
    Bantaman010 Member Posts: 15
    edited 30. Nov -1, 00:00
    Well I'm going back to work tomorrow to see how I get on :skull:

    I work in a Hospital that has rest bite and Alzheimer patients so have seen some people with bad arthritis and wonder if this is my road.
    :zombie2:
    Going to be fluffy now and ask if anybody cries a lot. I don't feel sorry for myself but when I watch something on the tv and it's sad or hits me hard I shed a tear or two. Maybe just me. :roll:

    Now sky has started the Christmas movies and this seems to kick me off.
    My favourite time of the year by the way.
    Clocking off now as I am fighting my right eye to stay open.

    John
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Yes, I cry when I watch movies. The slightest sad part sets my eyes leaking. Hubby always pokes fun at me for it but I really can't help it. Funny thing is, I rarely cry over much else, apart from my Mum's death recently, that was terrible.

    The worst movie for me was Hilary and Jacquie, about Jacqueline Du Pre. I cried uncontrollably through that one. I think I cried enough for everyone afflicted with a chronic, deteriorating illness. Absolute bucketsful :skull: So, John, it's not just you.

    I cry with relief sometimes. Like when I got my diagnosis and approval for an anti-TNF, otherwise, I'm not really a crier. I think I'm more likely to make a joke about something serious. My boss told me once I had a tendency to laugh at inappropriate times. My way of coping, I think :spider:
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Good luck at work today, I hope you find you can manage without too many difficulties. If the people with arthritis you are referring to are elderly then don't put too much store by what you see. Firstly you may not know what type of arthritis they have, secondly the drugs that we take for granted for the auto-immune kinds are fairly recent arrivals on the scene and are greatly reducing the risk of joint damage, thirdly although we all bear the same generic label of arthritis your experience will be different to mine.

    I think the sooner you find out what is happening within your joints the better, obviously the treatment for the MG has to be taken into account which may complicate things - thereagain it may not.

    Cry? I do but not very often. It's a human response to the stress we are under and sometimes a trigger such as a film allows the tears to come, they release tension and that is a good thing. DD
  • Bantaman010
    Bantaman010 Member Posts: 15
    edited 30. Nov -1, 00:00
    Work sent me home I need an all clear from the Doctor first in case something goes wrong. Seems sensible enough.
    I popped in and said hello to some nurses before heading home.
    :zombie-cat:
    Boomer13 I also laugh at the wrong times. I have been pulled up at work for saying the wrong thing at the wrong time " all in jest ". Working where I work you need a laugh now and again.
    As for movies you need to see November Christmas it's about a sick young girl who's dad is having Halloween and Christmas early, but it's the neighbour who helps him who lost his son that the focus is on. Hankies quick. lol
    I have Drs tomorrow at nine so I'll see how I get on.
    :spider:
  • stickywicket
    stickywicket Member Posts: 27,092
    edited 30. Nov -1, 00:00
    Good luck with the doc. If you want to see a rheumatologist (and I think you should) just ask. You have a diagnosis of PsA and they are the ones who can treat it. GPs can only tinker round the edges.
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    Sorry I`m late coming onto this thread John - just wanted to wish you good luck at your appointment. I`ll look in later to see how you got on.
  • Bantaman010
    Bantaman010 Member Posts: 15
    edited 30. Nov -1, 00:00
    Woke up this morning and not feeling that sore so walked the mile to the Doctors for my nine o'clock appointment to be told it's next Tuesday.
    :zombie-cat:
    My fault, the receptionist did whisper in my ear there was a 9.50 appointment she could squeeze me in as an emergency.
    I got took at 11.00.
    Doctor did tell me that I have already been referred to a specialist so glad about that. I heard him mention the word gout, can you get this in your knees and shoulders. Another thing I noticed is that I can't bend my left hand backwards. Does this sound familiar to anyone?
    Worst thing for me was on the way home my double vision kicked in so looked like I visited the pub on my return journey.
    :spider: :spider:
    If I cover my left eye it feels like I am falling backwards and feel dizzy.
    I have blood to give so going to get the nurses at work to do this for me and then I can get my results.

    John
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I'm pleased that things are now on the move for you, so to speak. My husband has blasts of gout from time to time but usually in the classic joints, the big toes. I believe this is another condition which is on the auto-immune spectrum and I have no idea if it can occur in other places - I don't see why it couldn't because it is caused by a buildup of uric crystals. He is fortunate in that after a few days of anti-inflammatories it clears up - must be nice to have something like that!

    The daughter of another member also had a tremendous fear of needles but had to overcome that when she was diagnosed with leukaemia aged 16 in December 2013. She has done so by sheer force of will and, once she was getting better, a short course of hypnotherapy. I'm not fond of them but they are useful things - despite doing my own injections I still cannot watch when my bloods are taken! DD
  • stickywicket
    stickywicket Member Posts: 27,092
    edited 30. Nov -1, 00:00
    How lovely of the receptionist to squeeze you in :D

    It's good that you'll be seeing the rheumatologist. Gout, PsA, it doesn't much matter which variety of autoimmune arthritis as the medication is virtually the same. I hope the appointment won't be too long but bear in mind it might be.

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