A New Diagnosis

jenzie06
jenzie06 Member Posts: 708
edited 30. Aug 2017, 18:46 in Living with Arthritis archive
In addition to having RA and Fibromyalgia for 19years I'm in the process of being diagnosed with Myasthenia Travis which is a rare neurological condition which causes fluctuating muscle weakness.

So the RA attacks my joints and my ligaments and now the MG attacks my nerves and muscles.

Yay me :(

It all started a couple of months ago, my left eyelid kept drooping in the afternoons, evenings. I only noticed when it passed my pupil or pushed my contact lens out of the way. My husband kept telling me that my speech was a bit slurred in the evenings too (I told him that he wasn't listening properly or that I was tired). I eventually sent a photo of it to a friend who said i should ring an ambulance as I'm clearing having a stroke (I wasn't but it did look weird).

Saw the gp who referred me to the eye clinic and sent me for blood test which came back negative (I've since been told its only 50/50 accurate). Spent ages in the eye clinic (saw everyone with increasing anxiety - if it's nothing they send you away pretty quickly right?). The consultant said that clinically they think its Myasthenia Gravis and I need to see the neurologists.

Now I'm waiting to see them but my symptoms are increasing. I'm so unbelievably tired it's untrue (if i have got this illness I'll have 3 diseases that cause fatigue - it's a wonder I'm awake at all!!) and I'm having naps during the day to get through. I'm also getting breathlessness in the past few days. I keep telling myself its all psychosomatic and I'm becoming neurotic. It's so hard not to sit there worry about every ache or muscle twitch (my eyes have been twitching a lot, the left one did it for a week solidly once drove me crackers!).

If it isn't MG then I'm scared about what it could be (MS has been mentioned).

Mentally I'm struggling. Sleep has been elusive despite exhaustion and I'm not particularly hungry. In addition I've had other news from a family member which has created huge emotional upheaval and I didn't react very well. I've cried a lot this week! Not sure how much you can take without going wibble.

Comments

  • jenzie06
    jenzie06 Member Posts: 708
    edited 30. Nov -1, 00:00
    Oh for goodness sake.

    The illness is Myasthenia Gravis not Travis, bloody sausage fingers.
  • petals
    petals Member Posts: 217
    edited 30. Nov -1, 00:00
    Oh Jenzie,

    What a terrible time you are having. I am so sorry you are having to cope with so much all at once. Having any chronic illness is difficult and life changing. Having 3 illnesses is a massive deal.

    Can you talk to your GP and request some emotional support? Maybe some type counselling.

    Is your family supportive?

    You clearly are in need of some emotional help to guide you through these tough times.

    Hang in there, hopefully the diagnosis will be made quickly and you can move on from this uncertainty.

    Wishing you strength

    Petals xx
  • jenzie06
    jenzie06 Member Posts: 708
    edited 30. Nov -1, 00:00
    I was meant to talk to my gp on Monday but in fact he rang on Fri so I wouldn't worry all weekend (he's fab). He's going to write to try and speed them up and wants me to ring and make myself a nuisance. The squeaky wheel gets the oil and all that.

    I told him how difficult I was finding it. I have questions and can't find the answers. The eye clinic said 'we think it's MG, bye bye' I didn't have a chance to really say anything.

    I need to have an idea of time frames. It helps. Is it going to be months before seeing the neurologists? One of my meds is contraindicated so should I stop taking it? I'm getting breathless when do we need to say help? I just don't know.
  • barbara12
    barbara12 Member Posts: 21,102
    edited 30. Nov -1, 00:00
    Hello Jen
    Its good to hear from you, but so sorry you have all this to deal with, having a good GP is worth its weight in gold..how nice of them to ring you, and speed things up..its the waiting and wonder thats the worse..please let us know how you get on, and I do wish you well..x
    Love
    Barbara
  • stickywicket
    stickywicket Member Posts: 26,270
    edited 30. Nov -1, 00:00
    Hi jenzie.

    I'm very sorry to learn that you also might have myasthenia gravis, another autoimmune disease. I know nothing about it but I did recall more than one person on the forum mentioning before that they had it so I did a search and here is the result. http://tinyurl.com/y9anv44e . Sometimes it can help to hear others' stories. I hope you can find out more asap and I hope your two boys are doing well.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • jenzie06
    jenzie06 Member Posts: 708
    edited 30. Nov -1, 00:00
    Thanks for doing that search Sticky. It does help that someone else is treading the same path as me.
    My boys are really good thanks although the summer holidays seem really long. We've just done potty training with Dillon and he's got it really fast. He's only had a couple of accidents. He's such a stubborn goat, if he decides he doesn't want to do something he won't do it. Wonder where he gets that from? 😉

    Barbara the waiting seems the worst. I'm waiting for new RA drugs and waiting to see the neurologist. I'm much better when I have a plan. All this uncertainty is driving me bonkers.

    Poor husband is putting up with a lot at the moment. I'm rather miserable.
  • stickywicket
    stickywicket Member Posts: 26,270
    edited 30. Nov -1, 00:00
    'Palo' doesn't seem to post recently but she seemed to cope really well with her arthritis and MG. I think she even has her own baking business.

    Good luck with the potty training. One of mine used to sit on the potty for so long that when he stood up it was attached to him :lol: He's OK now now though :wink:
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • palo
    palo Member Posts: 239
    edited 30. Nov -1, 00:00
    Hi Jenzi,

    Yes, I have MG, since 1999, and have been on most of the meds and treatments for it, so ask anything.

    What you say sounds typical of MG, one very important thing to remember is stress - try to avoid it and manage it, it will make the MG worse.

    Don't worry about the breathing, or any other wierd and wonderful symptoms, they are very varied and unpredictable - anything from falling over, dropping things to choking - any voluntary muscle can be affected so don't panic if you suddenly stop talking etc etc.

    Some people are only affected in the eyes, so it may be just that - double vision, droppy eyes etc.

    Good luck

    Palo
  • jenzie06
    jenzie06 Member Posts: 708
    edited 30. Nov -1, 00:00
    Thanks for responding Palo.

    I'm unsure how it affects things. Do things stop all of a sudden or is there a slow reduction? My eyelids have been twitching like mad. The left one twitched for a week without stopping drove me barmy. They did say it might just be eyes but the slurred speech indicates it may not (I never notice the slurred speech, my husband says I slur a bit. Personally I think he doesn't listen properly).

    I've lost words recently, I know the word is there but it won't come out. I have no idea if it is the fibromyalgia fog or possible MG. I also fell over but that was because I caught my big toe in the hem of the opposite trouser leg. Went down like an elephant.

    It's interesting stress makes it worse. I've had an extremely emotional couple of weeks and the RA is making itself felt. I'm booked in to have a chat with someone help me see the wood for the trees.

    I've managed to have some success with rheumatology. I received a letter saying my new meds had been NICE approved but I have to wait 3 months before they can prescribe it (due to red tape and the pharmacist deciding). So i rang pharmacy to ask why I had to wait for 3 months. CCG policy apparently but my consultant can apply before this (she wasn't going to bother). The pharmacist was lovely and said he'd go and talk to her. So now I'm getting the drug! The end is in sight (will be a couple of months though, ugh).

    The neurologist is on holiday and my referral is in his in tray and so is the letter from my gp saying can you hurry up please.

    Phew.
  • palo
    palo Member Posts: 239
    edited 30. Nov -1, 00:00
    Hi Jen,

    I have never really been aware of twitching, that for me is only when I am on too much medication (Mestinon).

    In terms of does it happen slowly or suddenly both. Slowly initially as a clockwork item running out of battery juice, until it stops, or suddenly as just sliding to the floor as your legs give way.

    The slurred speech can be nasal too, and speech can also get fainter and fainter until it fades out totally.

    If you feel like you are encased in concrete and trying to move or do anything is far too hard, that is generalised MG - your arms get too heavy too lift, as do your legs, and even holding a pen or piece of paper is impossible. In fact one of my party tricks is to keep dropping a pen in my hand, the other is falling to the floor...

    When speech is affected it is not so much as losing individual words as the whole of the speech process is too hard or just doesn't happen.

    But the 'cure' is rest, rest and rest. In my first few years before being stabilised with drugs I slept 12 hours and rested the rest, and occasionally managed to do something more than that.

    Good luck, with effective treatment you can regain most of the energy/functionality MG robs you of, and it is a broad spectrum in terms of extent of symptoms I am at the severed generalised end unfortunately, but do manage to do a fair number of things these days (well until the last 2 years dealing with gallstones, arthritis and now sciatica..) and am just learning to adapt again.

    I know you will find your symptoms improve if you can deal with your stress, and sleep properly, that too makes a massive difference. Your body needs time to recover and believe me rest and sleep are the least toxic of the treatments available.

    When I get stressed now my whole body just shuts down so everyone knows that they have to handle me with kid gloves, it just is the case. I will be unable to move, talk or function until the stress passes.
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Hi Jen,

    Gosh, you've had more than your fair share of heartache. I saw your post a while ago and meant to reply sooner, I'm so sorry. Firstly, I'm pleased to hear about the new drugs and although you have to wait, at least you know something is happening. Often, it is the unknown that's then worst. As for the neuro appt, I wonder if there is someone else in the meantime who can be given an ever-so-gentle kick up the backside and get you seen? I don't know if they have neurology nurses like other specialities but perhaps a reassuring phone call would go a little way to give some reassurance.

    As for the lack of sleep, appetite and tears..well I'm not surprised, you poor thing. ((Gentle hugs)) You have so much to deal with and your emotions must be all over the place. Please don't be hard on yourself and just take it day-by-day, even hour by hour if things are tough. I don't know if this is helpful for you but counselling has been invaluable for me and I'd recommend it to anyone who is undergoing a big life stress like this. I recently started again after a long break as I am finding my 'new body and new life' hard to accept. Even if it's just for the short term, to give you time and space to explore how you feel. Of course, we are here to be a friendly ear if you need to vent or rant or cry or just tell someone "hey, this is unfair and hard" because it is so unfair and hard. However, you are an incredibly strong woman and I know you'll cope with this, like you have with everything else that has come your way. You are never alone here.

    Hope your lovely little ones are doing well.
    Take care,
    Sophie x