Result!!
 

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

Wow
 

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

Thank you
 

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!:eek:

Thank you again for all your kind messages and support.

Love
Rach:grouphug:

Hi Rach!
 

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). :hug:

Annie

Rachel that sounds encouraging. I sometimes take my husband to my appointments. I like him to hear the info from the neuro and to offer his input.

Rach
I think it is important to keep our partners involved, as it effects there lives to, as much as ours. Doctors not only give medicines, but knowledge, & hope, when we go, & we should share that with others also.
Mary

So pleased for you Rachel - I feel a bit guilty when I read your posts because I was diagnosed so easily. I agree - husbands are great, mine always sticks up for me when we go to the doctors. Take care of yourself and let us know how the next step goes!
~Kathy

Too good to last
 

Hi,
Thanks everyone for their positive responses.

Yesterday was the day from hell! I knew I was in trouble from the moment I woke up. My right eye was closed and everytime I tried to look at something my left eyeball decided to roll back in my head. That eased off but my breathing went all wacky, one minute reading 84% Oxygen the next minute back to 99%. I was exhausted and scared so I rang my GP for advice.

He told me that the Primary Care Trust are likely to block the application for me having oxygen at home. Due to the fact, these are his words not mine " you have an unknown condition, Oxygen is given to people who have a recognised condition of the lungs". To say I was devestated would be a minor understatement. So due to the day I had been having I asked "whens it best to call an ambulance?"
"When you feel short of breath and your numbers are low."

So I already feel like Im back at square one. I battled all day to stay out of the hospital, because I knew I wouldn't get anywhere if I did go.

What am I supposed to do?

Love
Rach

I'm really sorry you are having such a tough time - and really upset at the medical folks for their behavior. Do you feel it is your doctor...or the system he works in that is the bigger challenge here? I guess it doesn't matter much...except that if you feel it's the system, then maybe France is the best answer.

Is today any better? I hope so much that it is.
Sue

Hi Sue
 

Thanks for the response.

Im feeling better today, still not been able to do much, but better.

My husband said yesterday I was grey, hardly moving or talking. He says I look better and obviously I have been able to move around a lot more.

I think its probably the system here. Everything is budgets, the Primary Care Trust will have a budget for oxygen. Despite the fact that its cheaper than me calling an ambulance and being admitted, they dont seem to lok at the big picture. Its frustrating as hell.

Im keeping France as an option, but I may be able to see a pulmanologist in this country, if the neurologist in London doesn't pan out.

Thanks again

Love
Rach

Well, MG isn't a condition "of the lungs" but a condition of the chest wall muscles!!! Let's at least get the facts right, dear doctors.

84% is scary low. I still think you should document the oximeter, how you look, etc. every single time it happens. Just keep the camera around and your husband can do it. You'll feel like you're part of a freak show but at least you'll have "proof" to show your docs. Like proof you are low on oxygen and NOT holding your breath!

I'm glad you are better but you know that won't last. ;)

When someone whose MG is worse walks around, the stats go down. Then when they rest, they can go up. Take that oximeter with you when you are up doing things and see what happens. If your pulse goes up too, your heart is compensating to get you more oxygen. Not a good sign.

Don't be left alone if you get worse. What if you get so bad that you can't talk or walk? Some people even have tape recordings of them saying "I'm in a myasthenic crisis. This is a tape recording because my voice muscles are so weak I can't talk. Please send an ambulance to . . . (your address)."

I just hope someone can help you soon. In the meantime, kick back and relax and try not to get into trouble! :hug:

Annie

Hi Annie
 

Thanks for that.

Thankfully Jamie is off work at the moment due to the stress and anxiety of it all. I say thankfully, Im just thankful he is around.

Luckily I have an emergency setting on my mobile phone that will send a message to Jamie and my mum should I get in a bad way. I always wear an outfit that has pockets so I always have a phone with me.

Im going to video the pulse ox when it goes low and video myself. At least I can then download it onto a disc and take it with me when I go to London.

Yep Drs, Im not going to say anymore as the moderator will step in and I may just teach you all a few swear words that you didn't know! I want you so much to believe that Im a refined young English Rose LOL !!!!

Love
Rach

How I Got A CPAP
 

Hey Rach,

I'll tell you how I got a CPAP, and maybe it could help you. First of all, the last neurologist I saw, back in the spring made me so angry because I tried and tried to tell him how I was suffocating both day and night and he literally just shrugged. After that I was determined to find a way to record my breathing problems because no doctor was going to help me and even when a test is ordered it seems like on that day I'm miraculously better.

Okay, what I did was buy an oximeter that will record oxy sat rate and heart rate every second for hours. Then, you can upload the data onto your PC with software they provide and see and print a graph and a report that will tell you which percentage of time you spent with an oxy sat less than 95, less than 80, less than 75, etc. Now brace yourself because this oximeter costs $299 (don't know what that is in pounds!) which is a fortune too all of us as we're all strapped financially. But it's the best investment I ever made. When the docs see it in black and white it makes an impression. Doctors, I think, are concrete thinkers and they have to have something to see. They have no imagination. :) Here's a link to the oximeter: http://www.devonsuperstore.com/PC-68...roved-P75.aspx

The first night I hooked myself up and as soon as I woke up that morning I was dying of curiosity and uploaded the data. Sure enough, I was suffocating all night long. I had some oxy sats dip into the 60's and spent a good deal of time in the '80s. I made an appointment with a neurologist who only does sleep work. Of course being a neurologist, he wouldn't let me talk until he had lectured me for 20 minutes on the facts of sleep apnea (what any idiot can get of the internet in 10 minutes, lol). Then he "allowed" me to show him my graph and report. His jaw dropped. He was speechless. He set me up for a sleep study the next week and it confirmed everything I had recorded on my home oximeter. Here's the funny thing: my eye was really drooping that day and I told him I had tested positive for the mg antibodies and he got all irritated that I hadn't been diagnosed yet. He kept say, "it's pretty simple to diagnose MG, I just don't understand". Anyway, he set me up with a CPAP. He said come back for a BiPAP when you have an official diagnosis (huh!) since he could only give me a diagnosis of severe sleep apnea. But I have to tell you just the CPAP has been a godsend. It's a miracle machine. I have a respironics remstar with what they call C-flex which lowers pressure (not as well as a bipap, but still helps) on the outhale so that does help and it's no more expensive than any other cpap.
I don't think that without the oximeter recording I would have been able to get a sleep study (they cost $2000) and then a cpap. Also, the oximeter reports gave me enormous confidence. I can pretty much predict now what it will show according to how I feel. I can also tell from my current oxysat and hr reading whether I'm heading downhill and need to lie down (at a 30 degree angle) with my cpap for a few hours. I really think this has kept me from completely tanking and also kept me out of the ER a couple of times (they don't do anything for me there either).

So far I have reports that show when I'm sick and lay down my oxygen sats drop into the low 90s and upper 80's, that when I sit up the sats are in the low 90s and my heart rate rises too high, that the sats go down into the 80s and stay there when I am on a plane, and that some days my heart rate goes whacky and bounces between very high and very low. I also have reports that reflect the same data as my official sleep study by an official sleep doctor. I can't tell you how good it is to have proof that I can show. I have an appointment with an mg specialist in California at the end of September and while I'm not getting my hopes up (ok, I am, I know I shouldn't but I'm sick and desperate, broke and scared) I do feel better having these reports to show him.

Anyway, I hope this can help you. I know what a terrible situation you're in because I'm in the same one. Make sure your husband video tapes every horrible thing that happens. Just amass as much evidence as you can. Let them know how serious you are. It seems like I had to waste thousands of dollars going to the Mayo (waste of time) before any doctor really took me seriously. Just because I now had records from the Mayo. It's irrational and stupid, but it's reality.

Just keep shoveling evidence in front of them. I figure at the least the docs that wouldn't help me will look pretty silly when my heirs sue them for malpractice after I die. (Sorry - gallows humor!!!!!!!!!!).

You notice that when the Dr sees you it is usually after you have been sitting and resting awhile waiting for him to come into the room, so of course you are stronger because you haven't been doing anything. It always ticks me off when they say, oh your O2 level is fine, and I am like, well where were you 20 min ago when I walked in here and couldn't breath.

From all I am reading with you and others across the pond, I am thinking I am glad I don't live there after all {I always wanted to}

You are in my thoughts every day.

Hi Rach!
 

Oh Rach I really feel for you.

I agree Joanmarie, that you sit in the Drs office for an age, and then pass all their tests with flying colours. mine gets frustrated when I once again say "No I havn't got a job yet", due to the fact that driving can sometimes be scary and , a bad night sends my mg crazy, who whould want to employ someone as unreliable as me. Still I'm good on the day, so I must be good at other times.
OOpps sorry I've hijacked the thread, sorry, I'm venting....
Kate

Hi Everyone
 

Just to update you.........Im getting my Oxygen on Tuesday. Its been agreed by the PCT Hurrah!

Now I just need a diagnosis LOL!

Love
Rach

Rach
How wonderful. that should make you feel so much better !