Hi Everyone,

I just thought I would update you with some good news for a change!

I saw my consultant today and hes agreed to refer me to the national hospital for neurology and neurosurgery in London saying " he feels it would be good to get an opinion from some one who didn't know my case".

I went to the appointment after not taking mestinon since Saturday night as I wanted him to see me in a pretty bad way. I then offered to take mestinon in front of him and have him come back and see me in an hour. He said theres no need Ive never said that they dont work. I bit my tongue as he has told me "I could take them if they made me feel better as they are a stimulant". Also the last time I saw my GP he told me mestinon had never been objectively proven to work for me. So where was my GP getting the info from? So when I saw the consultant I couldn't support myself in my wheelchair or hold my head up. I had to sit with my head in my hands so that I could see him!

I took my husband with me as he had never met my consultant. Jamie explained eloquently and firmly, exactly what its like looking after me. How once I was slipping in and out of consciousness and he had to shovel mestinon down me, with my lips turning blue. My consultant was pretty shocked. He asked if we had oxygen at home. Obviously not, because everyone says I dont have breathing problems. He is now organising oxygen for me through the GP. Obviously I am aware that CPAP machine would be better but its an admittance that there is a problem. Which we have never had before.

He told Jamie if he couldn't cope and I was bad he must call an ambulance. A member of the general public shouldn't be put in that situation. I said thats all well and good but they dont do anything when Im here and treat me like a time waster.

I provided him with a little light reading ! Two academic studies one on seronegative patients and sfemg from 2003 and another on the problems of how data on the effectiveness of tests for MG is incorrect, due to the way the studies had been carried out. Plus the MGFA Health care providers manual, which I had sent from the USA. He promised me faithfully that he would read them.

Today there was no fobbing off or dismissing me or mentioning Cortical Platisticity. We used the term "neurological disorder" which Im happy as a start.

But any how its good news for a change and I maybe able to put my passport away for the time being!

Love
Rach

Thanks Rach, for the update! Am so glad you've finally found one who is willing to listen, and take things seriously. Do continue to update us, will be praying for you. Am sorry to hear that you're in such a bad shape though, please do remember to take care.

Wow, what an "adventure" you are living! yes I said adventure because thats how I look at our illness. I am sorry you suffer so much but I am glad someone is finally listening! Please keep us updated and tell your husband thank you for being so supportive! You are indeed blessed with a good man.

So glad you may get the help you need, to aid your suffering, sounds like this guy is taking a fresh look !
Congratulations,
Mary

Rach that is wonderful news. I am not sure how long you have been enduring this because I am new to the board but I am happy that you finally have found someone who is willing to give you the medical attention that you deserve. I too have a wonderful, supportive husband and am very happy to hear that you have someone just as special as I do

It's always nice to hear good news and thank you for sharing it with us. I will continue to keep you in my thoughts and prayers.

Shari

Rach-

I am so-o-o-o happy for you. Interseting to me that once your husband was describing symptoms 'everything' changed. Same thing happened with my husband and my GP - - though I never had to go through the difficulties you have had to endure. Kind of like the husband validates that (in fact) his wife really isn't a lazy, hypochondriac - - there's actually a problem - - and the GP has an epiphany!! And then good things begin to happen.

Hang in there - - and keep that passport handy as a 'good luck' charm if nothing else!!

Sue

Hi Rach,

What wonderful news! Finally you will get the help you so desperatly need. I am so glad you have such a caring husband too. I will keep you in my thoughts & prayers. Take care

Hugs,
Pat

Thanks everyone for your kind words. I have to say without your support and advice this journey would have been extremely difficult.

But we are only half way there, hopefully I will get a diagnosis, but I am also aware we could also be back at square one. Sorry to be negative but Ive got excited about seeing other consultants before and ended up having the MG diagnosis taken away. So basically Im nervous as hell!

It was a dear friend that I met through the internet that told me to take my husband along. As she has experience in the medical field, she felt that he would provide the Consultant with an objective view. My mum normally attends the appointments, but she doesn't live with me. She can only report on what I have told her. Jamie on the other hand lives with me and can be objective. It is ridiculous and demeaning that with my evidence alone it wasn't enough to convince him prior to this. But if taking Jamie along is what was needed, the thats fine by me. Its come at the right time.

I have done this with all my Gp appointments as I am physically unable to get there under my own steam, but it has no affect. My Gp is treating Jamie for stress and anxiety, mainly caused by my illness and he's yet to put the two together. Or realise how bad it is. As Jamie told the consultant what its like for him, I broke down. He's been so strong where lesser men or women would have walked away. I am blessed, but I am also concerned about the toll it is taking on him.

All I can say is to any new people out there take partners with you, so they can tell the Drs what the illness is not just doing to you but your family as well. Maybe it will have more impact, it certainly proves you dont put it on for the Drs benefit!

Its been a very strange day! My consultant was like a completely different man today. Willing to listen, and not fob me off. He accepted the info I gave him graciously and in the spirit it was intended, to help others and so that he can improve his care of his patients. Thats all I wanted.

Lets just hope and pray they are open minded in London. You may have noticed my faith in Drs has been a little dented!

Thank you again for all your kind messages and support.

Love
Rach

YIPPEE! Finally some progress! I realize you are being cautiously optimistic - and who wouldn't be under your circumstances, but I am soooo happy for you!

I agree that it is degrading and demeaning that your dr was willing to listen with your hubby there, but @ least this time he was willing to listen!

You are gonna be dx'ed in no time! This will all be a memory very, very soon!

I have always respected your bravery - you are an inspiration for the rest of us!

Love,
Erin

Rach, I wonder if the doctors who saw you in the hospital during your kidney infection gave this guy a "talkin' to!" I know it's hard to hope but it's so awesome that you are not going up against a brick wall. And really, what a fantastic achievement to get oxygen. That will help a lot but I should also caution that MGers can sometimes have a hard time exhaling the oxygen and too much can build up. Breathing is an "in and out" thing and we have trouble with both to varying degrees at different times. Like my last breathing tests. My inhaling was fine but my exhaling was getting worse.

I really hope that they other neuros can see the obvious. You are in dire need of help.

I think it's great that you brought your husband. It so stupid that doctors need an "objective" observer, usually a man, to confirm that we are sick. I wish I could've "rented" someone, since I don't have a husband, to go with during my initial neuro appts. Very good descriptions of how he had to care for you too!

Good luck! I'll keep my fingers, toes and anything else I can think of crossed for you (though not for too long or they'll cramp up).

Annie