LUPUS UK
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Anyone Else Have Lupus and Myasthenia Gravis?

Hi guys, some of you might know I’ve been suffering with a really droopy eye for the past few months and have been offering suggestions and support (thank you for that!!). After seeing the neurologist my suspicions came true as I was diagnosed with Myasthenia Gravis. Not the best outcome but just trying to keep positive. I was wondering if anyone else on here has Lupus and MG? Hope you all have a lovely Christmas. Xx

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Hi unf4.

This is just my experience with Lupusy things over the years and seeing a fair few Neurologists. The one you saw may not be aware of how Lupus effects the nervous system or vascular system ?

I'm not an expert but I've just been to two different neurologists recently for a wonky weak left side and both of them had some somewhat different ideas as to whats going on with me. For me its a matter of going back to my Lupus specialist to see what she makes of it.

I also saw one years ago who diagnosed me with Crutzfelt Jabobs disease (I had the SLE diagnosis back then) Crutsfelt's is a terminal illness.........so I wasn't pleased. 14 years later I'm still here.

The problems I had back then were....as always.... due to SLE.

So please don't jump to any conclusions until you have a second or third neuro opinion and have input from a Lupus specialist.

X

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Of course, that all makes lots of sense! Only thing with MG is that there’s very specific tests (including blood tests) that make diagnosis a lot easier. It was my rheumatologist who sent me to the neurologist with MG in mind. I definitely agree about jumping to conclusions though :) x

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I'm really sorry that you've been hit with this double whammy. It must be a bit of a shock.

I hope you're feeling OK.

xox

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Just one of those things for us with autoimmune diseases isn’t it? Thanks so much, I’m keeping positive xx

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Are you been given more immuno suppressants for it ?

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No not at the moment as prednisolone is the best option for MG with ocular involvement apparently. X

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'xoxoxoxoxox'

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Hello again Unf4bul0us. I've been interested to read the outcome of your particular journey. I'm sure you're not too delighted to have this diagnosis but it's better to know than to wonder, of course. How did the diagnosis happen? Bloods? SFEMG? Tensilon test? Are you on mestinion as well as pred? I do know someone with both AI diseases but I don't think she's on HU. She had the MG as a school girl and took many many years to get diagnosed. She had her thymus gland removed with good result but this isn't the solution for all MG-ers.

I hope the treatment works well. I have a book by an inspirational lady called Debbie Pentland who fought (and won over) Lupus and Lambert Eaton Myasthenic Syndrome. It's really worth reading - I'd be happy to send on my copy for you to keep if you feel happy to PM me an address.

Best wishes, Clare

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Hi Clare, so sorry for the late reply. I haven’t been on here for a few weeks.

Diagnosis mostly happened as a result of examination and tests such a Simpson/ice ect as my eye was really bad when I saw him then. Think I will have an SFEMG when I see him next time but we’re not too keen for a tensilon test as I have a tendency to take allergic reactions to drugs. I’m currently not taking mestinon as apparently it’s not great at relieving ocular symptoms. But if my symptoms spread more then I will be started on it. I’ve heard that removing the thymus gland can have really good results but I’m definitely not at that stage yet thankfully!

Aww that’s very kind, thank you very much. And thank you for checking up on me/following this interesting journey haha. Xx

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