[kat89]

hi, hope ye're all well. this is going to be a fairly long story but i'd like to give ye the facts in order to get your opinions. i'm a 20 year old girl from Ireland. i have hypothyroidism, asthma IBS, psoriasis and now what appears to me to be MG it all started with the hypothyroidism diagnosis in 2005, although i was borderline since 2000, but doctors were hesitant to treat it due to my age etc. anyway, during 05 and 06 i began to notice double vision when focusing or reading for any lenght of time, which worsened over time. doctor again was hesitant thinking i had dry eyes etc as i was complaining of soreness in the eyes also. the aching was just awful. referred eventually to optometrist who basically said i had weak eye muscles and gave me horrible exercises to do, to strengthen them. they seem to make it worse in my opinion. no other treatment, just exercise and hope it improves. went to college in 07 and due to overwhelming fatigue (worse than that i had been experiencing with the thyroid) meant that once i got home from college i was fit for nothing except sitting down. this progressively got worse, eventually i had to skip some classes as i was just too exhausted. by the end of my second and final (thank god) year, i was attending classes very irregularly and i was experiencing muscle weakness in my arms, eyes were worse than ever due to study and i was aching all over. following a two hour exam, i couldn't actually lift the fork to eat my dinner, i had to literally lie on the table and try eating. despite eating healthily (i'm overweight and in my 20 years, the cure for almost every illness and disease i've had is weight loss, even the common cold it seems is cured by this miracle treatment. i'm sick of it) and doing some exercise, admittedly not much due to lack of energy etc, i was feeling worse than ever. i decided to try a different doctor in my clinic, who was very sympathetic and offered me diclofenac 50mgs two to three times daily. this was no use, i may as well have eaten some chocolate, at least i'd be satisfied. the only way i got any relief was taking two tabs in the morning before college, but once they wore off, i could only take one more tab in the rest of the day. she also referred me to a rheumatologist having done numerous blood tests. my ANA was elevated which she mentioned could be due to lupus which explained the fatigue, joint pain and was linked to hypothyroidism but i wasn't convinced. i am a pharmacy technician so i have studied some of these diseases and on further study i felt that the doctor was wrong, but i waited. during my next appointment, the doctor who previously told me i possibly had lupus backtracked and said my ANA levels were normal, and she honestly hadn't a clue what was wrong. went back to my original GP, who took me off diclofenac and decided i possibly had 'some type of arthritis' and prescribed sulfalasazine 500mg twice daily. i got an appointment to see the rheumatologist who was completely stumped by my symptoms, did a couple of physical tests, checking fibro points as my mam has fibro, but he didn't feel i have it. blood tests were done again, checking my complete blood work, liver function, CK levels, and generally testing for myositis, all which came back normal. im now being referred to a neurology clinic for an EMG so i think he's hinting towards MG. i mentioned the possibility of it to my GP and he just said, ah unlikely, that's rare. that doesn't mean anything, someone has to get it. i'm so frustrated. the sulfalasazine was not helping but i kept taking it thinking it might be doing good and i just don't feel it, but then i started experiencing side effects, diarrhoea within half an hour of eating, like serious diarrhoea. i am fairly used to it having IBS but these cramps were something else. Even in the past two weeks, i notice my muscles in my arms are getting so much worse, to the point where getting washed is agony in the morning, holding a book, scratching my head, reaching, even holding my hand on the steering wheel in car is pure torture and i have to support my hand somehow. when i stand up i'm like a woman of 100 years instead of 20. i'm just so disheartened. my job means that i'm on my feet for 8 or 9 hours per day, constantly walking or reaching which leads to me just collapsing when i get home, unable to do anything. its coming to the stage where i am noot able to work two days in a row, which is impossible as i only work Friday, Saturday and Sunday at the moment, so i can't swap. i've had to turn down my friends so often when they want me to go out with them, even to the cinema as i;m just so tired and in pain. they don't understand as someone of my age (or any age) should be able to socialise and enjoy themselves but i can feel myself getting more and more down as this goes on.it's causing problems at home as well, as i'm irritable due to the pain and fatigue. please help me, i'm desperate to get your advice, could it be MG i have?
thank you so much
Katie x

[gary g]

hi kat89,
i feel your pain and frustration.
i am 59 yrs and was first dx with parkinson's 11 yrs ago,then developed a lot of the symptoms you describe. mg is difficult to dx because the symptoms vary and change so much. my neuro had a lot of problems with my dx because it didn't show up in the blood work. i was a very physical man,so this presented problems in detecting weakness. after many second and third opinions i approached my original neuro and we set up an electrical response muscular stimulation test in early morning and then again the same test that afternoon following normal routine activity. the weakness was dramatic and clearly abnormal. combined with left eyelid droop, double vision,and a few other symptoms he made the dx. shortly thereafter i had thymectomy and now after 9 yrs i take 60 mgs of mestinon 3 times per day and lead a relatively normal life.
good luck. hope you don't have it, but if you do don't freak out. there is a cure in your future and the treatments today can make it manageable.

[kat89]

hi gary, thanks for replying to my post, its nice to hear from someone in possibly the same situation. I'm sorry to hear you haven't been well. I know from my job that parkinson's can be difficult to deal with, never mind combined with MG. I hope you are well now anyway. I've had some progress since my last post. My doctor decided to try me on 20mgs Prednisolone daily for one week which didn't improve my situation, so I went back but had to see a locum due to holidays. he thought a higher dose might help so tried 40mgs daily for one week, then 35mg for one day and reducing be one 5mg tablet every day for one more week. well it was the worst fortnight of my life. i didnt sleep for more than 4 hours any night until i reduced to 15mgs or less.. my muscles felt the worst they ever had. i had joint pain, and the headaches were unbelievable. i had been suffering from them while muscles were bad prior to steroids but this was just unreal. i would wake up in morning and have headache within 2mins of opening eyes, would take 2 xSolpadeine (Paracetamol 500mg/ Codeine 8mg) and headache would ease (never disappear fully) but would be back worse than ever by 1pm and the same again by 8 pm. when i went back to my own original doctor, he agreed with me that the steroids weren't going to do any good long term, even though many medical sites say it could take up to two months to see the effects, i couldnt go through that again... so i decided to ask if he could test my blood for mg checking for ACh receptor antibodies and MuSK antibodies, and even though he wasn't sure if our local lab could check, he went ahead. turns out they send the blood to England, so I should hopefully have results next week, all going well. This has given me some hope although i realise i may not get any answers. Ive recently had to get a prism put in glasses to aid the double vision and this has helped significantly but i'm afraid that long term use may weaken my eye muscles but at the moment, i need them, so i'll have to figure something out. anyway, thanks again for reply, hope you get on ok... keep in touch kat

[gary g]

hi kate,
i hope you are doing better.
everyone is different and mg is very complex. although we all seem to have similar symptoms but a little varied possibly because there are so many treatments out there. i had pneumonia x6 the first year from the swallowing mechanism. after researching the side effect s of steroids i declined and opted for thymectomy.the recovery went well and now i take mestinon 3x daily. when i feel an mg crisis coming on i increase the dosage and usually this works. actually i have learned to balance the meds and am pretty much in remiss. i stay active with exercise at a tolerable level. swimming is low impact and in my opinion the best. pregnazone causes weight gain and is good for some but problematic for others. i also had two cysts in the cervical region and was quadripallegic. after surgery they said there was so much spinal cord damage i would never recover. i worked 24/7 and manage my own therapy. i recovered totally. the mind is the strongest med. always look into side effects and options in respect to meds. mg is manageable to the well informed.
god bless. use the tools you have and you can beat this thing.
gary g

[kat89]

hi again gary, my god you've been through a lot... hope you are doing well now though. you are completely right, the mind is the best cure. my blood results came back negative from the MG screen, and while i know that this might not mean anything, it does seem like I'm back at square one. I have been pretty much working every day with the past three weeks and although i am wrecked tired and my arms are fairly bad, i find i am better on the days i am busy. yesterday i was off work and i had the worst day imaginable. my headache became a migraine, my back, arms and legs all ached as if i had climbed mount everest!! i honestly don't know what is the next step for me, all my other health complaints are starting to flare up again, so i think i need to do something.
best thing is to just stay positive but its so hard sometimes.

best of luck
god bless
kat.

[gary g]

hi katie,
i'm so sorry you're having such a terrible time of it especially at such a young age. i don't know what type of insurance you have but there are a lot of neurologists out there that can really help. the internet is very helpful also. i use it almost every day.
it may be stress causing the mi grains but i'm not a doctor so it's just a guess. they have a med called zomig in pill form that melts instantly in your mouth and is incredibly effective. the nature of the disease causes more pain and fatigue due to physical activity. if you could possibly take a short power nap during lunch break this might help.
try to get input from as many neuros as possible. they all have different views and treatments so you could possibly find the one with your silver bullet.
i hope and pray for some relief for you. you seem to be a very good person and don't deserve this.
stay strong, there is a way to better manage this. for what it's worth i'm always here for you.
gary g