Blood test results

[BabyOleg]

Is anyone able to explain the MG blood test to me please. Seen the neurologist today, who said my symptoms lead her to believe it’s MG and my blood test that was done a few months ago was a “borderline negative” - she wants to repeat it in 6 weeks. Is this somthing that can change? What does borderline negative mean in terms of results. Are there ranges? I thought it would be either negative or positive

[Blueoxo]

Hi, hope I find you as well as can be. When I had the test done they just said I had slightly elevated levels of the Antibodies. They repeated the test a few times and then gave me a provisional diagnosis of Myasthenia or LEMS. Not sure which yet. Not everyone who has myasthenia tests positive, although as far as I am aware no one ever gets a false positive. Other tests can be done to support a diagnosis. As far as I am aware if u have raised antibodies you have myasthenia. There is another group ‘myaware’ which is a closed Facebook group, this seems to generate more replies. Myaware can also send out to you information about Myasthenia Gravis, tests etc x

[BabyOleg in reply to Blueoxo]

Thankyou so much I will check it out. She seemed very fixed on the “it’s a very borderline negative” and I really wish I asked more questions. I’m left wondering now which is very annoying. How are you? How are you feeling? I have so many things going on atm I would just like to know what is happening to me. I don’t need a name but just an idea of how to fix things would be lovely x if you don’t mind me asking what was your symptoms when you was diagnosed x

[Blueoxo in reply to BabyOleg]

Hi, I was only diagnosed in October last year and still having tests. I was initially diagnosed with Fibromyalgia the year before but wondering now if that is wrong given a lot of the symptoms are similar. What effects me most is the fatigue. It hurts my legs when I use the stairs, feels like I’ve got to the end of a marathon rather than up one flight. It also hurts my arms holding them up, like when drying your hair. One leg always feels a bit weird, sort of weaker but not noticeable to anyone else when I walk. It’s like I have to think about it when I’m walking, it feels different. I’ve also been getting short of breath but not sure if that is MG related yet. Symptoms seem to change across the day or come and go. I have had times where it’s felt like an effort to hold my head up or where my tongue had felt like it isn’t working properly, with an effort not to slur, again not noticeable to anyone else. Iv never had double vision or lower eyelid droop but my upper eyelid does drop at one side, this tends to vary across the day. The doctor started me on mestonin and it has made a big difference to the amount of energy I have. I didnt realise how fatigued I was until I felt okish. I can tell when it is wearing off as I can feel the symptoms returning. It is frustrating trying to work out what is going on. I’m still waiting for a follow up with the neurologist and did the same as you. I came away with lots of unanswered questions. I did lots of reading up but have learned most from the myaware group. Membership is free and you don’t need a confirmed diagnosis to join. Hope this helps and you get some answers soon

[BabyOleg in reply to Blueoxo]

Thankyou that’s really helpful, I have the drooping eye lids it alternates each side from time to time, but self resolves with closing my eyes, I also find that my arms ache terrible when I dry my hair this has been going on for a few months now maybe even longer, I do feel I have much more other than sometime I can talk and my words don’t seem to form properly but I never ever though that was somthing I always assumed it was me talking to fast lol. Maybe I need to keep an eye on that.