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Noobie in the USA

SanddancerUSA 1 post Jun 23, 2009 5:28 AM	Just had confirmed yesterday through blood tests what I had suspected for several weeks, that i have MG. Just how many auto-immune diseases should one be allowed? I think i've have more than my fair share. Bugger! I have the double vision stuff going on along with the occasional droopy eyelid, and an inability to focus (apparently my mother and my maths teacher were right). To me it often feels like I'm badly drunk but without the unnatural desire to consume a kebab. Anyone have double vision on waking? I had this for at least a year or two prior to the diagnosis. Just thought it was part of getting old. It would tend to sort itself out after several minutes. Two years ago i had an episode of severe back pains. It was akin to my lower back muscles badly cramping and going into spasm. It had me bent double for a while. Some heavy duty pain killers and a warming pad seemed to help. I started to suspect coeliacs (auto bloody immune!) which it wasn't but i began to avoid gluten and that seemed to help tremendously and also did wonders for my psoriasis. Even though i tested negative for coeliacs i had had such a good response (felt better all round - more energy) to the gluten free diet that i have genrally stuck with it. Not strictly but generally. I feel the need to get to the gym and try and blast through this. Apart form the obvious benefits anyone found exercise of any use? Am i right in believeing that MG has probably been with me for quite some time and that something has allowed it to make itself know? What kicks it off? Post viral? Stress? Diet? Change of exercise routine? Martin PA.
TinaM 120 posts Jun 23, 2009 12:46 PM	Hi Martin Welcome to the forum, I was diagnosed by 1 neurologist then told by another that he thinks its not MG, so still stuck in limbo land, but taking mestinon. Read my profile (click on my name on the left for all my symptoms), but fuzzy/blurry vision is the latest thing. It can be bad on waking, and mestinon seems to sort most things, but not this vision thing. It's on and off throughout the day. It is getting quite scarey as I am scared my driving will get affected eventually if not properly treated. It is sometimes slight double vision but blurry mostly, who knows how it will progress!! Is your vision blurry or double? Does it go OK for a while if you blink & try to re-focus? I find mine worsens as I look at one place for too long. I've had 2 eyetests in the past few months & both were OK. I do believe from what I have read that stress or a virus could start/worsen MG. I also believe (if it is MG, and I'm sure it is) that it's been with me for a while, but worsened after 2 operations and a bad back episode last year. ---------- Tina Gloucestershire UK
RobR 34 posts Jun 23, 2009 4:07 PM	I have ocular MG. I was diagnosed (by blood test) about a year ago but was having some occasional double vision issues for the previous 6 months. I've had dv on waking for at least 12 months now. I was originally prescribed Mestinon, which seemed to have little effect on the double vision, but did help with eye fatigue. Since being on Mestinon I've not had droopy eyelids, but I only had that a couple of times pre-diagnosis, so I don't know whether Mestinon has helped there :-( In March this year I started on steroids which made things significantly worse to begin with (double vision 24/7 instead of for a couple of hours first thing, then again in the later evening), but has fairly recently 'kicked in' at around 55mg alternate days. I'm building up to 70mg on alternate days (which I will hit next week). Things are much better now. The morning double vision clears within 10 mins or so (it used to take 2+ hours) and my vision is pretty 'normal' most of the day, but my eyes do get tired in the evenings. I don't know what brings this on. Mine started after an incredibly stressful year, many believe that stress can be a contributory factor. All I know is that it hasn't gone away now that I lead an unstressed retired life :-( Coeliac condition will not cause these symptoms. My daughter is a Coeliac. Gluten destroys the villi in the small intestine in Coeliacs - it is not an auto-immune condition as such - it is an intolerance of a protein. I don't know how you were tested negative, but the ONLY 100% reliable test for Coeliac condition is an endoscope biopsy of the small intestine. Regards, Rob
jon1965 5 posts Jun 25, 2009 9:50 AM	Hi Martin, I'm new to the forum, I'm the one who just posted the thread regarding holiday insurance, amazing how fast the response is, brilliant. I have had MG for about a year now, woke up one morning with double vision, thought i had put my contact lenses in the wrong way round, obviously not, the double vision continued for several weeks. I could'nt wear my contacts and had prisms put in glasses, helped for a while and then the double vision improved, so did the prisms. I still get double vision occassionally, mainly at night. My eyelids still drop, especially when tired or concentrating on something for too long, one of my eyes shifts from its position, not a good look! The best way to describe my vision now is that i have the wrong presciption in my glasses, I can see ok but just not right, its the eye muscles playing havoc, it is very frustrating, i also had a drooping eyelid at first, I still get this when i'm tired. My MG is now generalised, arms and legs, I have good and bad days like most, I would say its mild to middle. I have no idea why it all of a sudden appeared, I have always exercised and at the time it started I was excercising alot in the gym and running, maybe just a coincidence. My neurologist said if you can exercise then do so, i guess you find your limits. My exercise is now taking the dog for a walk, i shouldn't complain, especially after hearing about the severity of other people's MG on the forum, it can be scary reading. I am currently taking Mestinon. 3-4 60mg a day, the neuro had suggested i have the thymus gland removed as soon as, I told i'll think about it, not my idea of 6 weeks out. Crikey, I do go on, don't I!! Back to your question, I don't think anyone knows why it kicks in when it does, it may have been in your system for a while, may not, main thing is now that it's controlled as best as possible. If your still awake by the end of this, I hope its helped. Regards Jon
SanddancerUSA 2 posts Jun 25, 2009 6:04 PM	Thanks for the replies everyone. I just got back from Philadelphia a few hours ago. I was checked out by a couple of Neuro Ophthalmologist who pretty much confirmed that it was occular MG and prescribed mestinon (pyridostigimine). They seemed quite up beat about my position. They want me to start on 3 x30mg first three days and then move on to 3 x 60mg. This was all very interesting because i managed to get a consult at the the Neurology Hosp. next door. The chap specializes in MG and he told me not to start on too higher does of meds but start 30mg/day. I felt much less confdent in my position after talking to the neurologist. He told me that it's 50:50 for this to progress from occular to the full blown MG. Then he gave me a whole shed of things to be careful of. Stress, operations, antibiotics, heat......WTF! The subject did get round to the possible whipping out of the thalmus but he said there was no definitive proof that this works. I had to laugh as he mentioned there is a study to determine once and for all if the procedure works. They are looking for volunteers to have the procedure done some will have the thalmus removed some will not. As the procedure requires the ribcage to be cracked open and you could be the one getting the 'placebo' they are a little short of volunteers. No hand up here. Anyway i've taken my first dose. On the double vision thing in the morning, all the docs seemed to think it's unusual and probably more related to the rubbish sleep i generally have. I have DV all the time but find i can turn my head to see past it so driving is not too bad. My drive to work is quiet so i'm not too worried. Yet. Martin
JanS 21 posts Jun 25, 2009 8:57 PM	Just a comment about adaptation. I live in USA, so when I drive, I have to check over my left shoulder to check my blind spot. So, of course, I have to close one eye to see how many cars are really there. I have had double vision for so long, now when I look over my left shoulder for any reason, my right eye closes as it they are connected. So, see, clever bodies do some amazing things. I take Mestinon 30 mg 3-4X/day and most of the time, that is enough. I add if I have to, but then the tummy stuff starts becoming intolerable. My MG is always worse with stress, physical or emotional. Be sure you get an accurate list of the drugs to watch out for. I just learned on this forum that there is quinine in some soft drinks. Hope something I said helps or makes you smile! JanS
chairman MGA Chairman 1128 posts Jun 26, 2009 2:00 AM	Sandancer You wrote: "he mentioned there is a study to determine once and for all if the procedure works. They are looking for volunteers to have the procedure done some will have the thalmus removed some will not. As the procedure requires the ribcage to be cracked open and you could be the one getting the 'placebo' they are a little short of volunteers." You seem to have mis-understood (or been mis-infomed) about what is going on in the Thymectomy trial.) There will be a randomisation to see who has their THYMUS gland removed. BUT there will be no placebo operation. Those who are not chosen to have a thymectomy will simply not have the operation at all. (What you have described would never have got past the ethics committees - even if there were any volunteers. "Unfortunately" this somewhat dilutes the value of the trial because obviously the patient will know if he/she has had a thymectomy - so the trial is not truly "double blind". ---------- Peter Finney MGA Chairman Last Edited on 26-Jun-2009 11:15 AM
alice 382 posts Jun 26, 2009 2:59 AM	Dear martin, your approach not wanting to have a relatively agressive treatment that is still controversial regarding its benefit, for occular MG is very sensible to me. on that note, I have found the design of this international trial quite briliant, as although the patient (obviously) knows if he had a thymectomy or not, the physician doesn't!. I also really like the philoshopical concept, as in most clinical trials it is either that both physician and patient are "blinded" or only the patient is, and in this specific trial the patient is the one that "knows best", and "holds the cards" in his hand. I do think though that you should consider treatment, as there are studies that suggest that early insititution of immunosupressive treatment with relatively low doses of prednisone, does alter the course of the disease, and decreases the risk of developing generalized MG. this makes a lot of sense, as many seemingly benign disease, when left untreated will eventually progress. and obviously you want to "land" in the good 50 %. and it is good that your physician warned against what can exacerbate this illness (better safe then sorry), but I promise you that most likely with time, you will learn what your own limits are, and what you should or should not avoid, and what would be the "price" of not doing so. and eventully learn to make your own priorities and decide when it is worthwhile to pay such a price every now and then. and hopefully if you end up being in the "right" 50% you will never have to do that any how. it is also a good idea to try and learn from the mistakes of others (or the right things that worked for them), instead of "inventing the wheel" yourself. this is actually one of my mistakes, that only relatively late in the course of my illness, due to many reasons, I started to seriously try and learn from other patients, and realizing that many times the patient's perspective of this illness, is different then what you learn from just listening to your physicians, who obviously never experienced any of it themselves. and last but not least, you definitely do not want any one whipping your thalamus, which is an essential part of your brain, as one of the good things about this illness, that it doesn't effect your brain at all, and you want to keep it that way! take care, alice
TinaM 123 posts Jun 26, 2009 10:49 AM	Hi again Martin I'm no expert but as regards double vision when you wake up, could it be because you get up early and are still tired? I have found that my vision is bad in the mornings, but generally only when I wake up tired. I also find my droopy eyes & mouth can be bad if I get up when still tired too (ie 6am for work, rather than 8.30 - 9.00am at weekend). This improves after an hour or so when I actually feel awake and have taken mestinon. ---------- Tina Gloucestershire UK
CLASystems 13 posts Jun 29, 2009 2:19 AM	Martin When I wake up, I have far-vision all double, and near-vision weak and hard to lock in so both eyes agree because they are so weak. I take Mestinon immediately, since things will only get better in about 45 minutes or so. Later, I have marginally serviceable far vision, but only by craining my neck all the way back, or modestly less than that; only that small range is not double. However, the close vision is quite good once the Mestinon kicks in. I was diagnosed with MG late in the game of actually having symptoms, which we recalled back to April, 2007 [I and my wife are the we] I first had the ptosis [eyeld droop] of the left eye. In late August 2007, I was driving at highway speed, when spontaneously I nearly killed us in an auto accident, but was able to steer off the road safely. [After we settled down, my wife took over the driving. It was truly fortunate because we were hundreds of Km from home and almost a hundred from our start as houseguests of a friend. It was rather scary: Suddently, I had one eye correctly continuing the notion of driving in-lane, while the other decided I was "flying" over the shoulder lane, around 2 meters up in the air! Keeping my head, I decided one eye was in hallucination, while the other continued reality, and slowly worked my way off the road. During this incident, I had a symptom I haven't heard of much in MG discussions: My right eyelid spontaneously totally closed, slowly and smoothly taking about 5 seconds or so. I could open it again, but it just "viscously" closed again and I could not stop this. I never had a repeat performance of this, but this was my first double-vision episode. Can anyone explain this other strange lid behavior? The condition came and went for months, sometimes being totally symptom-free for as much as a month. By April 2008, I had nothing but double far vision, but OK near-vision. I was diagnosed soon thereafter, and was on Mestinon 60 mg every 6 hours, with intense and painful stomach cramps, including some form of hiatus hernia type of symptom that suggests I have an alien in my belly as it distorts and bumps out quite profoundly at moments, etc. In late September, I discontinued Mestinon because I was in the midst of a bout of bacterial pneumonia that nearly killed me, coupled with severe "weeping" leg edema and pulmonary embolisms. However, while recuperating from the pneumonia and all of the rest, I went into total remission of the MG! I was actually driving in November symptom free. However, by January, 2009, I had double-vision at all distances, and Mestinon had no effect, and curiously no side-effects either. In March, I underwent a 4-5 day course of IVIG that has had various "booster" sessions every six weeks, including 3 days ago. Ever since, the Mestinon now works again, although I cannot even get any noticable side-effects unless I fast for about 6 hours [I am on 60 mg every 4 hours of awake time]. And even then, it's a barely noticeable baby cramp, and totally ignorable; eating anything makes it never appear. However, it does get me that little "boost" that starts 45 minutes every a.m. after the first 60 mg Mestinon. The Mestinon gets rid of the eye droop, but only adds that modicum of improvement in the vision, but I'll take anything I can get! [At least I can work with my hands on the keyboard again.] I intend to test my theory of "heat" stress reduction returning more normal vision next Novembeer [well, it has been true for the past two years!] Since heat is known to be stressful, I am positing that heat removal removes the stress, which perhaps explains why it remissed then, until I got used to the new cooler temperatures. I am 62 years at this point; as a male, a typical onset at age 60. No cancer or other thymus complications, and at my age, no recommendation for thymus removal. I am not a candidate for the steroids, as it makes be an instant diabetic. While I am here, I want to ask a question on another topic: I understand MG and alcohol don't mix. My question is: Does taking alcohol cause a general degradation of condition, or is it just a transient condition. In a nutshell, is a glass of wine a day a problem, or is getting "blind drunk" very infrequently also as bad [other than the next day]? cjl [an inquisitive non-drinker who wants to know his social limits. I no longer can say I don't drink and drive because now I can't drive!] Last Edited on 29-Jun-2009 2:26 AM
AnneH 3 posts Jul 02, 2009 4:01 PM	Hi Further to your query about MG and drinking socially. When I was diagnosed I asked that question of my neurologist, as usually meds and alcohol don't agree and his answer was "my dear not only is it allowed - it's almost compulsory". Needlsess to say I've taken him at his word. I take 30 mg of Mestinon 3 x daily and haven't had any reactions. Hope that helps, and pour one for me. ---------- AnneH South Manchester UK
SanddancerUSA 4 posts Jul 06, 2009 6:10 AM	AnneH That's good to know about the hooch. When i'm trying to describe what my vision is like to others i sometimes will equate it to being badly drunk but without the unnatural desire to consume a kebab or a hot curry.
AnneH 6 posts Jul 06, 2009 7:46 AM	SanddancerUSA, I know what you mean about the eyes. When I'm tired my left eye does its own thing. I have 2 sets of what I see, one about on top of the other and to one side, so I close one eye when movong. Needless to say I can get some odd glances with people assuming I'm winking at them I think. If only I were a little younger it might work on my behalf!!! Cheers. ---------- AnneH South Manchester UK