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!


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.


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

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.


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

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

Love
Rach

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

Wow Rach, that is good news & hopefully now a road to some real help for you finally.....my neuro is still somewhat reluctant even in the face of a decremental EMG, cuz of seronegativity.....I've been feeling somewhat better until I try to do any task extensively, then feel the muscles give out...as for my more recent hand/arm/shoulder pain, MRI showed extensive degeneration & damage of both shoulders, so am having lap cleanup" surgery on the left in Jan....all this on top of the MG has me a wreck, guess it goes with the territory....

I hope that Angela Vincent's new test helps out with this dx...

Good luck, have a restful holiday & let us know how they progress with your treatment...

Dottie