Going to see MD again, advice?
 

So I see my neuro in a few weeks and I was hoping to get some advice from you all on what to ask.

For the past two years every striational antibody test I've had done has been positive(the titers had been almost doubling for awhile). My last one earlier this year was negative. I have had two CT scans both showing reminiscent thymic tissue, no thymoma.

I had been taking mestinon regularly, but for the past month and a half I have not been taking it at all and I haven't noticed a change.

Striational Antibodies indicate thymoma, I know. But could there be any other reason for false positives? I have been doing really good the past few weeks and have been feeling pretty OK.

Is there anything you guys feel I should ask? Aside from blood work/CT's/and physical exams I haven't had any other tests done. Anything you would recommend?

Missed you all, I've been reading this forum almost daily but I haven't had much to contribute so I've been quite :P Hope you all are doing well!

I really can't think of anything to ask, as I myself freeze up when going to Dr..LOL, half the time I can't remember my own name much less ask questions. I hope all goes well with you.

Hey there GD!

Good to hear from you again. I'm sure Annie will have some real pertinent info for you.
The first thing that comes to mind for me is to ask what you asked us. Any other reason the Striational Antibodies would come back positive?

I don't see any EMGs listed on your "resume of tests". There are EMG's, RNS (repetitive nerve stimulation) and SFEMG (single fiber EMG) that are fairly regularly done with MG. If you have a firm diagnosis, your neuro may not see a need for these at this time.

It's wonderful that you've been feeling good, even without the meds! But......

Don't be fooled. Remember that MG fluctuates and can go into spontaneous remission. I know mine started long before it slapped me down and MADE me pay attention. I can remember several instances over the years with extreme fatigue or my lid drooping (which it has never done since then! - go figure) where they just resolved themselves so I didn't bother to chase it. I'm sure many others had that same experience.

I'll let Annie take over, because she is much better versed at the tests and results and what next? things than I am.

Don't be such a stranger. I'm a worry-wort and get concerned when someone stays away too long! LOL

Big Hugs and good luck at the neuro's. Let us know all about it, OK?




Are you seeing the same neuro you had before? Or are you giving the other one a shot?

Hey Gdbyrd!
 

So great to hear from you again! I was worried about you! How is the family? Is your new little bundle of joy here yet?

I cannot think of any additional tests, but just wanted to add my 2 cents and say to PLEASE take good care of yourself! Your wife and kids need you, so if you start to feel weak or are having any problems, don't hesitate to call your Dr. ASAP!

Big, big hugs!
Erin:D

Aww shucks. Nice to see you guys :P

Becky: Hey! I'm still keeping those thoughts in my head as much as I can. I try to carry some mestinon around with me and never really push myself. In August I'm going to get a new job, that's when I'll start seeing the other doctor. Setting a deadline and starting fresh, lol.

Erin: /wave :p I've been doing really well. Jaxon isn't due until June 27th, but as big as his mom is getting I'd imagine he'll be here a week or two early. It's a trip having ANOTHER kid. Scared to death, but that's OK.

Guess I'll have to wait and see. Meantime I'll look into some muscle studies. Hopefully she'll be willing to do them over the summer. So I can get some more answers. Meanwhile I'm going to just enjoy my summer I guess. I'll try and keep in touch here. Always thinking about you guys, but rarely get a chance to get to posting.

Take care!

Hi Gdbyrd!
 

Sooooo glad you are having more testing done! Good for you!

Let us know how it all turns out!

Big hugs!
Erin:D

Hi. There are so many posts lately that it's making me dizzy! ;)

Becky, That's nice of you to say but I'm no expert. I can, however, quote some experts from a book about the striational antibodies.

Gdbyrd, Here goes. From Neuromuscular Junction Disorders by Matthew Meriggioli, James F. Howard, Jr. and C. Michel Harper:

"Antibodies to striated muscle (StrAb) were the first autoantibodies discovered in patients with MG. They are reactive with contractile elements of skeletal muscle. They are positive in 30% of all cases of adult-onset MG. They are highly associated with thymoma, being positive in 80% of MG patients with thymoma and 24% of patients with thymoma without MG. Seronegativity does not exclude thymoma, and seropositivity is not absolutely indicative of thymoma particularly in elderly patients. StrAbs are most useful as a marker of thymoma in patients with MG onse tbefore age 40. A progressive rise in StrAbs titer after resection of thymoma is a good indicator of tumor recurrence. StrAbs may be a valuable marker in middle-aged or elderly patients with mild MG, where they may be the only serologic abnormality. False positives are rare in patients without MG and/or thymoma. They sometimes occur in patients with rheumatoid arthritis who are treated with penicillamine, in 3 - 5% of patients with LES (Lambert Eaton Myasthenic Syndrome) and in recipients of bone marrow allografts with graft vs. host disease."

I guess my opinion would be: What the hell are they waiting for? The tumor to pop out of your chest and say "hello" like in Alien?! :eek:

I would ask for them to redo the StrAbs again. I would ask for the other MG antibodies (Acetylcholine binding, blocking and modulating and the MuSk antibodies). I would ask for an EMG if they find any clinical weakness. But that's just me.

You can't always see a tumor on CT. Did you have your CT's with contrast?

How old are you? In other words, what category do you fit in with regards to the above excerpt from the book?

If I even suspected that I had a tumor, I would want it out of me before it had the chance to metastasize. But again, that's only my opinion.

Have they diagnosed you with MG?

The doctors who wrote the book I quoted are MG experts. Do you have an MG expert as a doctor?

Maybe you could get a used copy of this book. It has other great info in it.

Whatever you do is up to you and your doctors. Just don't ignore the research or your antibody levels. Are you on any drugs that could affect those levels like steroids (even steroids for asthma)?

That's about all I have, my arms are about to fall off. ;) Good luck!

Annie

Thanks for responding! OK. I'll start filling in the questions.

Both CT's were with contrast. They showed no change between the two tests(they were 8 months apart). My neuro had mentioned that she wanted to continue doing CT's every 6-12 months if my levels continued to riise....to which point I would almost glow in the dark :P

My first two antibody tests(spread 3 months apart) were wide spectrum. What exactly I can't remember. I was told that a musk test was going to be a lot of money out of pocket as my insurance wouldn't cover it...I never looked into it personally, as is I pay 400$ every 3-6 months for labs. All results aside from the striational antibodies and ANA were normal.

My only continuing symptom is binocular diplopia in extreme upper gaze(cover one eye it goes away).

I am a whopping 25 years old. Sigh. I know this is awful of me to say, but damn I feel old sometimes. I was "diagnosed" in Feb of last year.
I take NO other medications.

Thank you very much for taking the time to type all that out, I really, really do appreciate it.

Hihi!
 

Hey GD! I just couldnt resist replying to your post! Wow... I'm 26 and I feel like I'm extremely old too. My heart whines whenever an elderly walks briskly past me.. Everyone seems to walk past me now. And yessss.. Haha.. I've always been wondering if the contrast would make me glow in the dark too! =)

Mind's not workin properly today, talk to u again!

Thanks Annie! For the great info. Will process it when my brain's working better. :D

GDByrd, sounds like you have a good doctor, doing all the testing needed. MG is challenging to keep up socially, just remeber your still you, your likes & interests are still in tact, it just takes longer to do them !
Mary