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Hello - I'm New Here

Star 1 post Jul 01, 2009 5:31 AM	Hi All I have been reading some of your topics before I decided to introduce myself and an amazed at the variation within MG. I was diagnosed last October with occular MG, by blood test after my local hospital eye clinic detected something was amiss after I had reported double vision to my GP. I was quickly given an appointment to visit the neurologist who prescribed Mestinon which started off at half a pill four times a day and has now increased to 1.5 pills x 4. I now experience awful stomach cramping but I understand I can take Propantheline half an hour before the Mestinon I find the double vision occurs when I am tired (and it doesn't seem to take much to make me tired these days) and the droopy eyelid, despite medication, is also more prevalent in the evening/tired time. The only other symptom I can realistically relate to MG is the occasional difficulty in swallowing so have learned to eat smaller mouthfuls and avoid dry food. I have mild asthma, and have B12 injections which have now settled down to one every three months. Sometimes I suffer toe curling, but this was happening prior to MG and seemed to begin during the iron deficiency period; prior to this I have been inclined to suffer cramp for no apparent reason. I am determined to be upbeat about all of this and live as well as possible. Laughter is a great medicine. The information I am picking up from your topics is just wonderful - do our neurologists read this?
TinaM 127 posts Jul 01, 2009 12:34 PM	Hi Star I'm glad you can still laugh, I think you need to with this disease. I'm fortunate that even when my face is looking like the worst frown in the world I can still laugh about it (albeit with a funny look on my face). I don't get lots of cramps, but have had these when I first started on mestinon, they're only occasional now. It's interesting that you have B12 injections, is that for pernicious anaemia? I believe that too is quite rare, but my sister has it - although she doesn't have to get injections as often as she thought she would initially. I don't think my neurologist reads posts on here!! He's of the opinion that someone with MG must have certain symptoms and anything looking a little different must be something else - he's still not told me what that something else is though. Fortunately there are many that don't share the same opinions as him, it's just a shame that many on this forum have taken a while to find the right neurologist with an understanding of MG. I do hope you have a good neurologist. I was also prescribed propantheline to take with mestinon but I cut this down to one per day then eventually found that I was fine without it. It was also nice to not have a dry mouth when I stopped taking it as it used to make my swallowing even worse together with the MG symptoms. ---------- Tina Gloucestershire UK
sally1louiselouise 773 posts Jul 01, 2009 1:02 PM	B12 injections are very common, they are given for a variety of reasons, B12 deficiency can cause a lot of symptoms that are also familiar in other conditions. SALLY ---------- Margaret South Wales UK
Star 2 posts Jul 02, 2009 12:35 AM	Hi Tina and Sally I have B12 injections for anaemia and it has taken two years to reach a point when they only have to happen every three months. Thanks for the reference to Propantheline it helps to know how others find their medication affects them. I didn't know it would cause a dry mouth; I also didn't understand how Prop. could stop the reaction in the gut but not elsewhere? I don't think I understand what else is being affected by the Mestinon. I know that sometimes I get tingling along the sides of my tongue and on the lips, not unpleasant but odd. I don't think I know my neurologist well enough yet to determine whether he is deeply interested in MG. I find when an expert asks "Any questions?" I wonder what those questions are that perhaps I should be asking????? I have been efficiently dealt with and seem to be falling into a six-monthly cycle of appointments for follow-up. I think really I have a fear of something awful happening as I live on my own. Perhaps someone will understand this and let me know how they cope with this aspect of things. Maybe I am being overdramatic but from what I have read there is a possibility that choking or respiratory problems can arise. Crumbs, the foregoing doesn't sound too upbeat does it! Never mind - looking forward to a family weekend and a wedding so onward and upwards. :-) By the way not long before the double vision started I had a tender small swelling over the centre of my left eyebrow and just above the temple. This didn't cause pain, it was just tender to the touch. I did wonder whether to bother the GP with it but after about a week it disappeared on its own. Last Edited on 2-Jul-2009 12:42 AM
TinaM 129 posts Jul 02, 2009 3:03 AM	Hi Star I know it's easy for me to say, especially as I'm in the same boat as you and never had trouble with choking/breathing. I honestly would try not to worry too much. I do get swallowing problems and sometimes I think they may progress, touch wood that to date the worst has been the total inability to swallow on two occasions, this has been fine again after a few seconds, but swallowing is sometimes more difficult on the plus side I am still able to swallow and it's not a permanent thing. As regards your Neurologist, I think the important thing is that he sees you regularly and listens. I have also found a really good GP at my surgery, so I always ask to see the same one. That probably helps, I don't think you should be made to feel that you are "bothering" them. They are there to take care of our health afterall. As regards questions to ask the neurologist, I wouldn't be scared to ask anything you ask on here, nor tell him about your concerns on breathing/choking etc.. I hope you have a nice weekend & enjoy the wedding. I'm off work today and don't work Fridays so having an extra long weekend..... ---------- Tina Gloucestershire UK
AnneH 2 posts Jul 02, 2009 6:36 AM	Hi Both, Reading your messages and I can say that I'm new to all this too. I was diagnosed in Feb.09 and had a little trouble with my voice ( sounded on occasion like Jonathon Ross on valium)! I too take Mestinon and have stomach cramps occasionally. Not enough to take anything for tho'. I apparantly have a high antibody count but very few symptoms, so far so good. Must admit though to casting a sideways glance at the breathing problem that can occur. Not too keen on going there. Has anyone any thoughts on swine flu and the vaccine? As the vaccine is probably formed on the previous virus and can give you a mild form of flu, is it worth taking it? cheers AnneH
alice 398 posts Jul 02, 2009 9:08 AM	Star, I personally think that the fear about breathing problems, is because it is not discussed properly by (I believe) most neurologists. one has to understand that crisis/breathing/ swallowing problems can be a part of MG. it is true that some patients will never experience it, and others will more then once, but I am not aware of any way to know, who will, who will not and when. I personally think that the fear can be significantly reduced by having a better understanding of what it is, and how to manage it, and also knowing when one should seek immediate help, semi-urgent or none. it is also very important to have a physician or physicians, that you feel are compentent, capable of truly assesing what is going on, and instituting proper management. and knowing that in case you have to go to the ER, they either know what should be done, or could/ would be ready to consult your physicians. I know that my patients feel very confident, and have much less fear with time, as they know they have all that. and I have put a lot of efforts into making educational material that could help them understand their illness, treatment, possible complication and measures to be taken in such a case. I know that the MGA has a lot of such written material that is very helpful. I am not sure if there is anything specific for those issues. I believe that many neurologist think that if they will discuss such issues at a certain length with patients who have relatively mild symptoms, this will lead to undue stress. I personally think that the opposite is true. and I am sure that living alone makes those concerns much harder. and I do not think that you are overdramatic, just trying to have a plan, which is very reasonable in my oppinion. don't many nations have plans for a possible atack by a neighbor country, even if none seems to be a real threat? alice.
sally1louiselouise 774 posts Jul 02, 2009 9:25 AM	Hi Star, I don't think you are being dramatic, I think it very sensible to be talking about your fears. Living alone I am sure you will be concerned about any swallowing problems and any breathing problems that may occur and they should never be ignored and if you are in any way concerned then you should conctact your neurologist. I am not saying this to alarm anyone or be the bearer of doom, but if anyone does suffer swallowing or breathing problems then they should get attention ASAP. It is always sensible to be prepared, even for something that may never happen. Enjoy your weekend, take care......... SALLY ---------- Margaret South Wales UK
Star 3 posts Jul 02, 2009 10:29 AM	Dear All You are so kind. I will think of how to make a plan and discuss with my GP.