Please give him a call. That way you will not be worried over the Holidays.

Hi Debbie,

Sorry to hear remission is over fist of all. Hope that turns around for you again soon...

Besides you not having symptoms and having symptoms, how is it/was it identified for you to have and no longer have MG? Was your blood tested before/after/recently or did you just go by the symptoms and stop taking drugs etc?

If mestinon is not holding back your symptoms or you are finding you need more and more, you need treatment to push this back. Don't be messing around with your breathing. Contact the neuro before your appt. We will be here for you...

Love to hear your story and answers to my questions. If you prefer, I will message you also.

Peace be with you.

Troy

Thank you Sami & Troy. I was 15 when I was first diagnosed, unable to walk, talk, eat, double vision. At one point I would be talking & I was the only one who knew what I was saying, no one could understand me. I was diagnosed at U. C. Davis & where I had my thymectomy. ICU for a week after surgery. I don't know if they still do this, but they took away mestinon to see if I would go in to spontaneous remission. My husband had to fight to get it back, said she is never going to get off the vent if you don't.
I was able to decrease the mestinon till I know longer needed it.
About 5 months ago I started having blurred & double vision, then some breathing problems. My husband & I were camped in the high Sierra the first time so I thought that was it. We live in the Sacramento valley so when it continued to happen I asked my GP to run a blood test. It came back 41, so she wanted to run again in a month, it was up another 15. It only took me about 3 weeks to get in to the nureo. It's been 25 years and I swear it could be yesterday. He didn't do the tensilon test which I had the first time around but everything else. EMG was abnormal. So here I am wondering what the heck. I guess with the breathing being one of the first thing to show back up I'm worried about how bad this is going to get. My husband is retiring in three months and we are suppose to start traveling in our motor home. Thank you for listening.

Debbie, I can only imagine how you feel after 25 years of being symptom free. My symptoms came on fast this summer. Within 3weeks I had ocular, bulbar and limb weakness plus incredible fatigue.. What I know from others here is they there is no rhyme or reason to MG. you may want a Cat Scan again. I learned thymic tissue can grow again. Don't mess with breathing, go to ER if necessary .be well, and stay in touch,

Thanks for coming here. So glad to hear you are symptom free. They stopped my mestinon in the hospital because I couldn't swallow and I ended up on respirator too....What in the world were they thinking.

Anyway.....have you had unusual stress or illnesss that triggered this setback?I went down hill fast once.
I am just wondering what triggered your crisis? A death of some one you love????
Ann

Stay in contact with your neuro and let him know about your breathing problems. You may need something else added to your treatment plan.
hugs
sherry

Thanks for the story Debbie.

Were you diagnosed this time at UC Davis? They have a resident expert there, Dr Richman in Neurology. He has published works and I know my neuro took residence under him in college.

I presume your current testing done by your GP was an antibody against the receptor testing when you mention the rise in numbers?

There is no correlation to severity of MG in reference to the amount of antibodies we have against the receptors, only that we do or do not have them. Seronegative is another story. I tested at 247.38 nmol/L, which may be a different number if measured differently. I don't know how everyone is measured or if there is even a standard for measurement. So me reporting 247, could be 24.7 to others? Not sure.

It sounds like the first time around you did get spontaneous remission. That may have happened whether the thymectomy or not, which is the crazy thing. For them to take away the Mestinon certainly carried risks...
I sometimes wonder had I not taken any mestinon ever from the start what would have happened? I noticed my issues just with nasal speech. They gave me antibiotics for sinus infection to appease me. I didn't know any better, only that something was wrong. I worsened after the antibiotics and got weaker overall as I was generalised and not knowing. Through research online, I diagnosed myself and then my PCP agreed and I was MG panel blood tested positive, as mentioned. I was sent to a Rheumatologist for add'l testing and a Neuro, whom I have close contact with anytime now.

These EMG's given around and about must be done by very experienced people. They are a tricky diagnosis and I am surprised you would get one if you tested positive via blood. You wouldn't have a tensilon test either if you tested positive via blood, me thinks. Why would there be further need for testing if you test positive via blood and react to mestinon?

Am I understanding all you have said correctly?

I appreciate you sharing your experience. Keep in mind what we have said about your breathing. It is very serious.

Sorry that you are here, but thanks for being here among us.

Please let us know what may have triggered you recent set back...if at all poosible. I found your situation very hopeful.
Thanks

So CT scan said no to any thymus tissue.
@Troy. It was my idea to have the blood test. When I started having symptoms after 25 years I asked my GP to run the test thinking instead of working up my fears it might calm me. That came about because I had the EMG for a auto accident. So when it came back abnormal no one could seem to answer my question (is this because of the auto accident or my MG). It was preformed the same way as the one I had done years ago.
The tensilon test was done in my teens when first diagnosed..it was done by the head of nureo on MG research of UCLA who was at U.C. Davis that day. That stuff lasted 30 minutes on me. I wish it was part of the maintenance drugs because except for my full remission that was the best I had felt in two years.