Back from my appointment
 

Hi Everyone,

I thought I would just update you on how my appointment went today as you have all been rooting for me.

Ok firstly I still don't have a diagnosis but the Prof is heavily leaning towards Seronegative MG. My SFEMG was negative again today. However the Prof said thats not uncommon in patients with seronegative MG. I have had bloods taken and its being tested by Angela Vincents team, using the new very sensitive tests they have for people with seronegative MG. They claim its identifies up to 95% (of those previous 20% on the normal achr test) as positive for mg. However should I still test negative for this its not the end of the road. He would be keen to do a plasma exchange, should I improve after the plasma exchange that would be positive proof of seronegative MG.

Hes writing to my GP and hospital Consultant (should be interesting as they have both told me mestinon doesn't objectively work for me and they are 100% convinced I dont have MG).

The only condition mentioned throughout the consult was seronegative mg.

Obviously with Christmas being next week (still can't believe that!) then the new year this will slow everything down.

I managed to stay calm and in control throughout the appointment.

Very pleased with how it went. He wants me to send him a copy of my tensilon test video - eyebrows raised when he found out that I had responded for 5 mins with improved speech and 1 min plus for my eye opening.

Happy even though there will be a wait.

I apologise in advance for spelling mistakes its 1145pm! But I just can't settle to sleep.

Love
Rach

Rachel,

I am so relieved and happy for you! That is fantastic news- I'm sure that when they do PLEX and see how much you improve, that you wont have any problems anymore with a diagnosis...

I also think that it's awesome that he said that SFEMG and blood tests can be negative (obviosly) in seronegative MG...That's the truth, anyway! I don't know why your previous docs. were being so resistant...Seems like they don't really understand the variety in MG...

This doc. really sounds like he knows his stuff, and that you guys are on the same track...What an awesome prelude to the new year!

:hug:
Nicky

It sounds to me like you finally found a doctor who is actually "objective" and can see you have MG. That's FANTASTIC! Thank you, Oxford doctor.

I hope what this means for you in very real terms is a better MG treatment plan, better treatment by these other doctors and a higher quality of life. I have to tell you, I was really worried about you. Those O2 saturations of yours are dangerous.

I hope you will have a very good night's sleep tonight, knowing that someone FINALLY took you seriously. They should've taken the disease seriously a long time ago.

Now you probably have to make decisions about what treatments to have. Sounds like they'll try plasmapheresis first. Read up on it - in a couple days.

Thanks for telling us how it went. Like Nicky, I'm very relieved.

:hug:
Annie

Rach -

Ditto to what Nicky and Annie said.

I'm terrifically happy for you - - after all this time, you now have the 'right' doc.....you know, the one who has a brain and is willing to use it!!!! (hehehehe). Good for You!

Sue

Rach,

so happy that this Doctor has started things happening!!!
take care
Kate

great news,

I am so glad that you have finally reached a neurologist that understands that a patient can have myasthenia with a normal SFMEG.

such neurologists are so few and far between.

let's hope that he will publish it somewhere, so that others will learn as well.

and not less important, that you will start recieving better managment soon.

alice

hi
 

Just thought I would say Thank You, to everyone who has supported me, cajoled me and generaly just been there for me on this journey. (which I know has yet to reach its end)

All I will say is you are all very special people to me and this forum is my sanctuary.:grouphug:


And now I am going to be resting for a bit as my adventures seem to have caught up with me!:eek:

So don't panic if Im not on for a couple of days, Im just feeling a bit crappy!

Love
Rach:winky:

I am so happy for you Rach! Been a long time coming and you must be so relieved. Get some rest and feel better.;)

Hugs,
Pat

Rach, what great news that you are on your way to a diagnosis. I too am seronegative. I was fortunate to have a neurologist that looked at the "big" picture. Although I did test positive for the SFEMG. I hope that this step in the right direction gives you some relief and you can enjoy the holiday season. Take care~ Melanie

Great news!
 

hi
 

Thanks for all your messages.

Haven't posted much on here as I managed to come down with the flu and a chest infection the day after visiting Oxford. Must be all those foreign germs! (can't remember the last time I actually left Devon!)

I received a copy of the letter my Oxford Consultant has sent my GP. Which clearly states that seronegative MG hasn't been ruled out. That they are completing a whole battery of tests including the new one which is more sensitive. He also states if the bloods are negative it still doesn't rule out seronegative MG, as only a plasma exchange will do that. Which is what I have been saying to my Drs here and anyone that will listen to me for over a year.

The good thing about the letter is that if I do need to go to hospital before the results are in, I can tell them (again) and show them the letter that proves it is possible I have seronegative MG and be treated humanely rather than if I have munchausen syndrome!

On antibiotics for the chest infection (safe ones) and thats clearing. Jamie (husband) thinks all his christmases have come at once because I have lost my voice. I sound a bit like minnie mouse! and I can't go above the volume of a whisper.

Thanks again

Love
Rach

Hi Rach,

sorry you arn't well, hope that clears up soon.
I'm so glad you have a letter to take to hospital if you need to, heres hoping you don't.
take care
Kate

Merry Christmas Rach!
 

Hey Rach, am so glad to hear that you're being taken seriously and that the doctor you're seeing is so nice! =) Its great news!!! *hugs* do hope that the test results will be out soon, and that you'll have your treatment plan worked out.

Hi Rach, This sounds good news and that you now have an informed GP is even better. Hope the chest infection clears up soon. And the voice !

Hey Rach,

Hope your chest clears up soon. I'm taking antibiotics for mine too. My voice sounds squeeky, but I'm starting to feel much better. No fevers for 2 days now. I'm just so happy you found a doctor who believes in you. The letter is so important and good to have. It's been such a very long painful road for you, but I think you are well on your way to getting a diagnosis and the proper treatment you so desperately need. I'm pulling for you. Take care.;)

Hugs,
Pat

Rach,

I'm so happy for you that you're being taken seriously. What a relief for you! That letter must feel golden for you. I know when I finally saw my mg diagnosis on paper, I showed everyone. I loved seeing it in black and white. Sounds totally strange, but after years of not having a diagnosis it was such a relief.

I hope the tests that come back help you even more.

Ally

thank god for some positve news
 

I still believe at local consultant level because of the statistics of mg even an excellent consultant does not see enough patients to see the rare cases that stump everyone .
My case is the same (read my recent posts)my consultant refuses to accept my inability to hold up my head using my neck muscles is not mg related but spinal without any proof by testing .
I have touched base with my gp on this and mentioned Oxford.
Was your referral to Oxford done by your Gp or Consultant.
I wish you all the success with your treatment in the future and a happy new Year:hug:

Hi Patrick
 

My GP did the referral but only with a lot of tantrum throwing by me. So your GP can refer you directly, however with a GP referral comes the possibility of your PCT refusing to pay for it without the consultant getting on board. I was lucky and had no problems.

I will personal message you with the details of who I was referred to.

Neck weakness is a classic symptom of MG so I am surprised that your Consultant doesn't realise this. Well actually Im not, look what Ive been through for nearly 3 years and I still dont have a diagnosis, just a bit of paper saying that they haven't ruled seronegative mg out.

Love
Rach