Just diagnosed

Hi all, my husband has just been diagnosed today after 7 months of investigations. I suffer from lupus another auto immune disease so we are a right pair together. It is only affecting his eyes at the moment can you tell me can it progress quickly and are there certain triggers to make things worse.

Any help or information would be gratefully received.

Thank you

Karen.

4 Replies

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  • Hi Karen and welcome. I have to tell you that this is not a very active site, although it was the first one I came across.

    Firstly how was he diagnosed? Was he serum positive? If so the treatment is then usually quite straightforward.

    Secondly how is he being treated? Pyridostigmine is usually given as a symptom control and then either immune suppressants and/or steroids treat the disease. Neither are very nice drugs to take but they are the most effective and commonly prescribed drugs.

    How is it affecting his eyes? Ptosis and double vision are the most common symptoms and it is certainly how mine started, along with muscle fatigue and general tiredness, especially during infections, (grandchildren are not good for avoiding infections!). when it is very warm or very cold or when you overdue things, rest usually helps a lot. Heat and cold will affect how he feels. He MUST tell the DVLA if he drives,

    Whereabouts in the country are you? Is he seeing a good neuro?

    As far as progression, it is very individual. As far as I can tell, no specific data to quote, about one third of diagnosed patients with ocular MG will not go on to develop other symptoms. Others will progress, especially when not treated, it is usually descending so what are called the bulbar muscles, voice box, neck muscles, oesophagus and breathing muscles can be involved. I started to get a weak neck, felt like I couldn't hold my head up and by evening I needed a chair which supported my neck which also ached.

    There is/was a patient day in Birmingham on ocular Mg recently - checkout the Facebook page for details as that is where I saw notes for it.

    If he has difficulty swallowing or breathing - A&E immediately! Things deteriate VERY quickly, but I am sure you will have been told about this, I know my neuro spent a long time explaining to my husband just how serious this can be, known as a Myasthenic crisis. But most people never experience this level of difficulty, especially when treated appropriately.

    In the USA we are called snowflakes, because the way the disease develops is so individual in every person so it is impossible to say. In the UK it used to be called Rag Doll syndrome, which sort of explains what happens when it progresses to the larger muscles.

    Apart from the above the best advice I can offer is be very careful in the warm weather, rest plenty, ensure you have a good neuro who he should be seeing every couple of months until it is stabilised.

    You probably already know about the UK charity myaware.org where you can find loads of info - especially note the medications that Myasthenics must not take. Avoid anything containing Magnesium which is known to exacerbate symptoms in some people.

    The Facbook page of Myaware is the most interactive forum in the UK - link from the web page, there is also a forum on the site but again, not that useful I found. I also use several other Mg forums on Facebook - Myasthenia Gravis is international - there are also special sites for people on trials, LEMs etc. Also check out Daily Strength forum - people in the U.S. Tend to be more proactive and I found a lot of information on that site.

    Sorry for the long reply, hope it helps, please ask any questions, I may not know the answer but will attempt to point you in the right direction. Myasthenia is very well understood and so is one the first autoimmune disease which is to trialled with new treatments, there are several on the horizon, in the meantime well treated it can be managed by drugs, sensible lifestyle choices, diet and rest.

    Good to have some company on this site!

    Best wishes CD

  • Thank you so much for your reply, basically his diagnosis has been trial and error. None of the tests confirm myasthenia but the muscle weakness in his eyes only points to that. He is now on prednisolone and lansoprazalone to protect his stomach. We are now waiting for his appointment to see a neurologist for further information and treatment. We are in Lancashire uk so not sure where we will go.

    Thank you again and I will check out the other websites you mentioned

    Karen x

  • For those who are serum negative (about 30-40%) getting a diagnosis is often very difficult and people sometimes wait years. I had to wait for a neuro appointment for 18 weeks which I was not prepared to do so arranged a private appointment, with a neurologist of my choice which you have a right to do on the NHS, and after the first consultation he suggested I went on his NHS list, which I did. He now gives me my next appointment so I don't need to go through the ridiculous booking system in our area (Devon).

    Getting a good neuro who specialises in Mg is the hard part and be prepared to travel. JR in Oxford and Kings London seem to be the centres of excellence and because this is such a rare disease it is difficult to find someone in the provinces. I am lucky in that I have a neuro in Exeter who I am happy with for the moment, he has offered to refer me to JR Oxford though if I want.

    Takes some time to come to terms with as it can be debilitating at times but now I can do most of what I want, most of the time and I have little or no DV and occasional ptsosis on a bad day.

    Myaware will have details of support groups,nay local is not so local and is more social but having contact with others with Mg really helps me although men sometimes don't like to talk about it do they?

    I am originally a Lancashire lass so know the area well. Do you go to Manchester or Liverpool for your appointments?

  • Hi Karen C, I have had MG for 15 months. I was in hospital for 5 days having an i.v. immunoglobulin transfusion which completely got rid of the drooping eyelids, weak jaw muscles and inability to whistle. I was put on to 60mg predisolone which I started to reduce slowly about 6 months ago, now down to 15mg per day, going down 1mg per month now. Have been introduced to azathioprine, 50mg for two weeks, now 100mg per day. Side effects of the pred were putting on weight on the top half of my body, 8 kg in a year but now stabilised, still got a moon face. MG at present symptoms are breathlessness esp walking up hills or stairs and general muscle weakness but as has beeen said before symptoms vary and treatments vary. Keeping your body cool helps me quite a lot. Good luck

    Ian