Hi Everyone,

Im just writting this as I am totally and completely confused! (that makes a changeLOL)

I got out of the hospital after 24 hours on IV antibiotics as I haven't been able to shift the Kidney infection Ive had since 8th August. (just my 6th trip this year)

When I usually go into hospital I say Im "query myasthenia gravis" to which the response is, "no your tests are negative". Im usually arguing with a member of the neurology team, or A&E who have seen far too much of me this year!

So I decided to not tell them this, on this occasion. I said "I have a neurological disorder, which is yet to be named". So imagine my surprise that when the surgical team did the ward round they said "This young lady is 35 and has myasthenia gravis, look at the unilateral ptosis, which she says hasn't resolved whilst she has had this kidney infection, despite taking medication" You could have knocked me down with a feather!

After 12 hours of antibiotics the ptosis resolved, so when they did the ward round the next day. "this young lady has myasthenia gravis, those of you who saw her yesterday would have seen the marked ptosis, although its still slightly there, we can see shes feeling better" To which I answered "your right Ive had ptosis since 8th August when this infection started and I no longer have any pain."

My confusion is based on- why do the surgical team call it myasthenia gravis, when the neurology team call it cortical plasticity. I spoke to one of the Drs and said I have got the diagnosis Cortical plasticity, to which he laughed and said thatas a bull **** diagnosis, have you tried the london hospital of neurology. I said yes but they wont see me without a referral.

This isn't the first time other Drs in the hospital have queried my consultants diagnosis. One consultant said to me "hasn't he made his mind up yet?", another said "what more evidence does he need, you respond to mestinon". These people have all seen me take the mestinon and watch my ptosis resolve. I have asked them to put it in my notes, but no one wants to be the one that contradicts my neuro.

This is crazy! As Im sure you will agree.

I also feel heaps better, my neighbour has just seen me and said Ive got colour in my cheeks for the first time since this kidney infection started.

I do feel great, but Im cautious as I always feel fantastic after 24hrs of bed rest!

Love
a very confused.......
Rach x

I am glad you are feeling better the more I read the more I appriciate my neuro. It always amazes me how many Drs just don't listen the their patients.

Thanks for your reply.

Ive been spending this afternoon sorting out stuff to prepare for my appointment with my consultant on Tuesday. I recently bought the MGFA Myasthenia Gravis A manual for the health care provider.

I was having a look at their Quantified Myasthenia Gravis score. From that it was pretty clear my nuerologist doesn't understand the role of the respitory muscles. My vital capacity is around 3.86 (however in 2007 it was 4.01 and I was smoking 20 plus cigs a day). Its pretty much bang on for my age height and weight. On the QMG chart it says basically everyone should be within 80% of their predicted vital capacity. My vital capacity dropped in June and it ended up at 58% of what my predicted capacity was. When I pointed out the drop (at that point I didn't know it was significant and I didn't have a calculator) I was told that this was fine as long as it stayed above 1.5 it was fine. Ive found out since a vital capacity of 1.5 means intubation. I wasn't fine, it doesn't really fill me with hope!

I know Im not dying with a 58% score on vital capacity, but this shows moderate involvement of the respitory muscles. I just feel like I have to do all the work for them!!!!!!!!!!

Love
Rach

Rach, Yeah, I think it's funny too how everyone but the neurologists can "see" you have MG. Well, funny but not since your life can be threatened by it.

A lot of neurologists are psychiatrists first. Maybe that's why they insist that our symptoms are all in our heads.

I'm just glad you got the kidney infection under control. Now they should try to figure out WHY you are getting them.

Hmmmm, infections can make MG worse. Make the infection better, make MG better. Duh.

Obviously your doctor doesn't understand what happens to chest wall muscles in MG. I think you should ask for that referral over to the neuros who know what they're doing. To make sure they don't get into their "blacklisting" mode, you can always say that this other guy was really nice but he might not have understood all the details of MG or something like that. It's amazing how "threatened" doctors can feel - and how quickly.

Sorry if I can't remember but did they do arterial blood gases on you?

I'm glad that guy said the same thing about cortical plasticity, that it's total BS. Because it's not a disease but a way to talk about the state of the brain. Cortical Plasticity is GOOD to have. Means your brain is still "pliable" and can function well.

If people haven't been through this kind of crazy doctoring, it's hard for them to even wrap their minds around it. How could doctors possibly do that to a patient, right? When you are going through it, it is the most threatening, crazy-making and disgusting experience. I am sorry you have had to go through all this. I know firsthand what it's like. All the evidence is making a bee-line to MG but they can't see it to save their life.

Hang in there and keep getting better! You're lucky it's been coolish in the UK lately.

Annie

Ive never had arterial blood gasses done. They were going to do it in January this year but an idiot neurologist marched in and told them I didn't have MG. It was the same idiot that told me the answers to the eye exam as I couldn't read it due to double vision!

Im not looking forward to tuesday, Im trying to put some notes together so that I dont forget things.

Have a good time tomorrow and make sure you rest!

Love
Rach

Hey Rach,

Glad you are feeling better. I'm sorry for all you have been going through and been put through. Hang in there...it's going to get better. Good luck with your appt. Tuesday. Take care.

Hugs,
Pat

Hey hon! Isn't it AMAZING that the other docs "get " that you have MG, yet your neuro is still clueless? How frustrating!

I cannot WAIT till you get to France! I just know you are going to get the help you NEED!

It is fabulous that your lung function is so great! I'm the same way - blew a 4900 @ the last PFT and I am a smoker.....need to give it up, but I'm getting there!

It IS going to work out honey! You have been so brave - so strong - so tough - you are going to get the help you need!

Much love to you!
Erin