Feel like I'm going crazy?
 

I had labs drawn this week(anti-striational antibodies). Every other lab draw I've had done for that has had positive titers, indicating MG.

My labs drawn on Monday came back today and they were negative. What does that mean? Does that mean I'm in remission? Or does it mean nothing?

The ONLY positive indicator I had for this disease was this lab test. I came in with double vision when looking upwards, that and occassional fatigueability. I had remaniscint thymic tissue as well, but that's it....

I know how powerful the mind is over the body, now I'm wondering how much of this stuff is in my head. Is this normal? Am I going crazy? Lol, feel like I am.

I would like to speak with my neuro but she's very difficult to reach, next appointment isn't until June : /

You are NOT crazy!
 

Hey Gdbyrd! I felt the same way....no one believed me - thought I was looking for attention, whatever, even my dr who checked for my swallowing tests told me I was "fine".

You are not fine. You may be denial, cuz' no one wants to have MG - no one, but you sick!

If every test has come back negative, save one, you prolly have it.........you have to be your own advocate on this one.......Hang in there!

Once you have your dx and your meds, you will feel much better, and your chances of going into remission will go up. You are young. You are strong. You have a great attitude!

It will get better! Don't let anyone tell you that this is in your head. It is MG.

Let me know if you want to talk....I'm here 24/7!


Big, big hugs!
Erin

Gdbyrd, I don't know much about your history. What doctor told you that striational antibodies were specific to MG?

Patients with MG can have them, that's true. But patients with other diseases can have them as well. It's not an MG-specific antibody per se. And it often indicates, depending upon how high the titer, that a person MIGHT have a thymoma.

http://www.mayomedicallaboratories.c.../Overview/8746

http://www.ncbi.nlm.nih.gov/pubmed/15767509

Page down a little bit on this site:

http://neuromuscular.wustl.edu/mtime/mgthy.html

Do you feel that your neuro has been thorough in testing you? Have you had a SFEMG? Do you have ptosis, along with the double vision (I would imagine so)? I suppose I should not be so lazy and look through old posts!

I'm really sorry that you don't have answers. You have every right to call your neuro before your appt. and have a conversation about this. I hope you do just that. The diagnostic process can be so incredibly frustrating.

If you feel you need a 2nd opinion, then get one. If there is a possibility that you have a thymoma, then getting that taken care of soon is important. No, I'm not saying you have one! But if there is that possibility then someone ought to be doing more to find out.

Annie

If you're going crazy we all are!
 

I bet almost everyone of us was made to believe we were crazy - I was flat told that by one neuro - said it was all depression over my dad's death and that I needed to be in the psych ward!

You'll have to check out the new post I'm going to do in a minute here.
I have found THE neuro in my area. She's awesome, and I will relay some of what she told me.

The important thing for you to know is that your doctor WORKS for you. You can fire her if she isn't able to answer your questions, isn't willing to call you to discuss your concerns, or if you feel there's something she's not doing.

I had one neuro I really liked right after I got my last dx (I've had 2 now) for MG. She stopped taking anything but Medicare or BC/BS insurance because her real specialty is end-stage MS and I'm sure that's all most of those people have for insurance.

Anyway, I started a search for a replacement neuro when I starting have some minor issues again. The first one may have been ok except that her English left a lot to be desired and I needed clarity. The second one was close to my home, but it turns out he mostly deals in head injury type neuro stuff. I began searching everyway I could think of to find one that lists at least neuromuscular diseases as a specialty and hit the jack pot.

In the realm of feeling well cared for, understood, and taken seriously, I feel it is so important, though very difficult, to find a neuro with the right sub-specialty.

If you'd like, I can help with the search or checking out your doc/docs if you would like to let me know where you live. I'd be happy to help.

Don't despair - you are in control even though it feels very out of control right now.

:grouphug:

Thank you guys for helping me not feel alone on this. It's really frustrating. I consistently seem to defy the norm for the dx I was given last year. I can do a lot of physical work, forget to take my meds, etc...and most times I don't get fatigued at all..the other times, who knows, it may be because I'm out of shape or because I'm imagining it... I do have trouble swallowing sometimes, but I've had that a long time. Just a choke every now and then while drinking, which as my wife pointed out today I've had for a really long time.

Erin: From the beginning I've been in denial but it's just too wishy washy for me. I don't feel like I think I should with this disease, things just don't follow through : / Who know though you know?

Annie: That's what she told me too, that it was indicitave of thymoma. I have had two CT's, both showed no thymoma. Both did show remaniscint thymic tissue though. I'm 25 btw. I don't have any ptosis, I do get fasciculations in my arm and facial muscles when my MD tries to tire me out...she says that's fatigueability, which she also uses to aid DX. There again, that could be from the Mestinon.. Aside from a barage of labs, two CT's, two MRI's, and several thorough physical exams, no other tests have been done.

Ras, I'll take any help I can get. Right now I'm seeing Dr. Victoria Parada, she's of Valley Diagnostic Clinic in Harlingen, Tx. I'd love to get a 2nd opinion, but from my colleages opinions she's my best bet within a couple hundred miles. But, that may be with normal neuro stuff, not this sort of thing.

Seriously, for now, I'm going to stop taking my meds..do stuff as I'd like, and see if anything comes up. Start going on bike rides and working outside again, see what, if anything comes up. Not sure what else I can do on my own but I'll for sure leave a message for my neuro to get back to me.

Grr....lol. Sorry guys and ty very much for all your help.

Whoa! Please don't stop taking your meds, especially not without talking to your neuro first! Any med is dangerous to stop cold turkey.

The thing with a thymoma is that they may not see it on CT. Even a "little" thymoma can cause MG. When the tumor is gone, no MG. There are cases like that.

Maybe you need the 2nd opinion of a thoracic surgeon. They could look at the films, etc.

Just please take things easy. When I decided to get reckless and ignore my disease, I ended up in the hospital having a crisis. You do NOT want that to happen!

Annie

I agree - don't stop meds!!
 

Gdbyrd,

I hope you turn out not having MG, but IF you do and you come off your meds you're asking for trouble. I also fought it, etc. but it will come back and bite you if your not careful and believe us when we tell you that crisis is very, very scarey and awful. :confused:

Please see my newest post with information from my new neuro. She was very sharp, up on all the newest info, and she actually lists MG as one of her sub specialities, which mean she actually studies and keeps up with the disease news and developments, and I really trust the information she gave me.

Hang in there buddy - you can try the excercise and such while on your meds. Just start slowly and build up as you find you can tolerate it - just in case!

And wait until they remove your diagnosis for sure before pulling off your meds. I'll try to do some searches and such on Neuros for you tonight. I'll send you a private message with what I find, ok?

Talk to you later.

Becky

I am in the same boat as you are - but none of meds they have given me to date have worked so I am not on any. I only have a positive SFEMG and one other test.
You may find as I did that your diagnosis is given and taken away like a lollipop - it makes no sense to me. After all, my symptoms are still here.
Do take it easy and listen to your body.

Hello Gbyrd!
 

All I can say is PLEASE take it easy.........this is from someone who had a terrible crisis and spent 8 days in the ICU cuz' I was in denial..........

I know you feel OK right now, and I pray that you STAY that way - always, but you NEED to take care of yourself......if not for yourself, then for your beautiful family.

Please,please,please listen to your body!!!!!!!!!! I think it is great that you feel good enough to do all of the stuff that you are doing, but if you start to feel weak, please take care of yourself!

Hang in there and know that we will be here if you need us......


Big, big hugs!
Erin:D

Sorry about that, was just really frustrated and needed to vent. I'll continue taking some of my meds, just not as frequently as I had been..see how I do. I called my neuro and she's supposed to call me back by Monday.

Just super frustrating. Have to wait and see what she says. I'm going to see if she wants to do anymore tests before my next appointment. I did notice that I still have occassional trouble swallowing, so I'm definitely going to continue taking my meds.

Thank you guys for your support and letting me vent! I'll post what my neuro says this week just for an update. Thank you guys again.