New Update - Neuro says MG
 

Neurologist said I've finally given her enough to refer me to MG Clinic at UC Davis - 2hr drive. She thinks I have MG...but with some doubt, I think mostly because all tests are negative, so far (blood, emg). But I respond to Mestinon. Why all the BUTS with this disease? Can we please close the door on doubt? I'm feeling like the kid who can't pass the SAT's but knows everything on the test.

I had a whole list of questions for her ---she said UC Davis will answer those and handle my long term care. She's sure? No other meds and no increase in Mestinon.

And to boost my confidence the nurse tells me UC Davis MG Clinic hasn't been accepting their referrals. Um, why is that? HUH. But I don't want to put energy into that. POSITIVE MOJO TO UC DAVIS...YOU WILL TAKE ME TO YOUR LEADER!

Can we call this a milestone in what seems like a long, exhausting, heart breaking journey? Mantra: What I need I have. Including all the support.

What shall I do to prepare for my appointment? Pictures? Medical Journal? Get a note from my shrink???! What will they do now that I'm on Mestinon?

Thanks!
Jen

I'm sorry that you are on the diagnostic quest. I found it a nightmare and not knowing for me is often more difficult in all aspects of life but certainly w respect to illness.

I will say since I was seronegative I was initially dismissed. It wasn't until I brought in pictures and videos on my ipad that they started paying attention. My first symptom was ptosis. I have huge eyes so even when they were barely open they were still bigger than most. The before/after shots were very remarkable and told the story way better than I ever could.

My advice is:

Write down a time line before you go. For example, I noticed the first symptom around abc date and then it graduated to another symptom on xyz date. Don't get hyper detailed.

Have your photos ready and all in one place.

Make an afternoon appointment when MGers tend to be worse (vs am).

If the dr doesn't seem like he or she is going to be invested, cut your losses and move on. There will be someone who gives this the attention it deserves.

Best of luck.






QUOTE=bizzymum42;1022757]Neurologist said I've finally given her enough to refer me to MG Clinic at UC Davis - 2hr drive. She thinks I have MG...but with some doubt, I think mostly because all tests are negative, so far (blood, emg). But I respond to Mestinon. Why all the BUTS with this disease? Can we please close the door on doubt? I'm feeling like the kid who can't pass the SAT's but knows everything on the test.

I had a whole list of questions for her ---she said UC Davis will answer those and handle my long term care. She's sure? No other meds and no increase in Mestinon.

And to boost my confidence the nurse tells me UC Davis MG Clinic hasn't been accepting their referrals. Um, why is that? HUH. But I don't want to put energy into that. POSITIVE MOJO TO UC DAVIS...YOU WILL TAKE ME TO YOUR LEADER!

Can we call this a milestone in what seems like a long, exhausting, heart breaking journey? Mantra: What I need I have. Including all the support.

What shall I do to prepare for my appointment? Pictures? Medical Journal? Get a note from my shrink???! What will they do now that I'm on Mestinon?

Thanks!
Jen[/QUOTE]

You might want to call the clinic to see if they want to assess you first without mestinon in your system. I was so nervous about my 1st neuro appointment that I somehow confused the appointment and went a day later. I had to wait another 2 weeks.

It's no fun discovering you might have a rare disease like MG. Looking back, I worried more than I should have, but there was nothing that could have made me worry less. If you have MG it will unfold in its own way and you will be OK. If you can avoid getting tangled up with worry, do that. It sounds like you are lucky to be going to a quality place for treatment.

Thank for the tip about mestinon. I'll call ahead about that. :)
You understand my nervousness. :eek: I feel like I'm prepping for a job interview! I will be OK. It helps to remember that. This is HARD WORK.

Blessings!

Jen,
Others have given you great advice. Both a journal and photos will be helpful. If you're able, take a supportive person with you to the appointment.

It took me 7 long, frustrating years for me to receive a diagnosis after my initial tests for MG were negative (antibody, EMG). A tensilon test and a positive response to mestinon sealed the diagnosis.

Please let us know the outcome of your appointment. :hug:

Cate

Jen,

I just want to send you a big ol' :grouphug:

Have been (close) to where you are right now.

The diagnosis of MG seems to be such a precarious "call" for so many physicians (and their confused and ill patients).

I have an amazing neuro-opthalmologist who was POSITIVE I had MG - even before I endured all of the elaborate diagnostic tests. Basically, he just took a good "look" at me, performed the VERY scientific "ice pack" experiment :D (it worked) and confirmed the diagnosis. And then sent me on to the team of neurologists...........

Which opened a big can of worms. It amazes me how one neuro can see symptoms or a person's reaction to meds one way, and another neuro sees them completely different. :eek:

Finally, the skeptical neuro sent me to an MG specialist (2 hrs. away) who performed SFEMG. Which was positive for MG.

HOWEVER, after the test, he (the specialist) told me he KNEW I had it from the moment I walked (shuffled at that point) into his office.......

Then he sent me to a colleague who had a practice near where I live. My current neuro is not considered an MG specialist, however, he has consulted with the "expert" who diagnosed me a few times, and I have much confidence in him.

MG is indeed, a merry-go-round.

Whether you are in the diagnostic stage, or finally have a diagnosis and are being treated, it can continue to have its ups and downs.

Hang in there.

:grouphug: Again to you.

I'm tacking on another question here. They increased my dose to 60mg 4x/day, which helps a lot.

I've been told to "do as little as possible" (along with the lecture about going to the nearest ER if SOB isn't controlled by meds) by my neurologist's nurse.

Last Thursday I had SOB and couldn't walk for a bit, hence the increase in meds. I over did it by trying to do my normal routine, sad to say. Had to cancel my schedule the next day.

I wait to see MG specialist.

Not to be negative, I'm thankful for the meds. I'm coping on the couch. How do I climb back up?

J

Take it easy and don't do too much before you see the MG specialist. The MG backlash from doing too much can sometimes take several days to recover. It took me a year to accept that and in the meantime I made my life much harder than it had to be.

Mestinon makes me feel better but it does not let me act and do like before MG. Even on a good day, I still have to pace myself.

Take it easy and take frequent breaks, nap when you can. Time your activities after your mestinon dose so you are stronger. My recliner is my best friend. Ice packs help me if certain muscle groups are more effected.

Good luck with your appointment
kathie

I was diagnosed by a neuro specilaist in the hospital. He said based on my symptoms he thought he knew what it was but wanted to do a test to make sure. He used the tensilon test and I responded. He started me on Mestinon in the hosp. and I responded to it also........That has led me on a merry-go-round of testing. All other tests have been negative so now none of the neuros around will treat me and my PCP says it must be all in my head. You are lucky you have a good neuro.:grouphug:

I'm so sorry your getting the run around and now they say its in your head. :mad:
I don't understand how they can diagnose you with Mestinon and a Tensilon test, then take it away? I thought the blood tests and even the EMG, didn't rule out MG. And from what I've read in the posts, even a SFEMG doesn't always pick it up the first or even second time. ???

Does it effect your eyes? Have you seen an ophthalmologist while you're symptomatic? (that's what got the neurologist to listen and take me seriously, from what I could see). Have you gone to an MG specialist? I bet you've tried many things. I hope this forum helps you find a path that will get you to a helpful doctor. My heart goes out to you.:hug: Don't give up!! This is your health!

I know once they tell you its in your head, the doubt can really get to you. If you still have symptoms, maybe its time to take a chance with yet another doctor? I switched GP's to a "hippie" MD who really listens. I feel loved. LOL. And he believed me right off. I'm hoping he's also a good doctor. So far, I think so. He's the first MD to take me seriously about all my eczema and allergies and extreme sensitivities and put it all together with autoimmunity. MG or not, he doesn't think its just in my head. He could tell something ain't right.

Anyway, I wait to hear from UC Davis MG Clinic.

Jen:grouphug: