[Aw3sk3r]

Hi everyone,

I am a 34 YO male and was diagnosed with MG about 5 months ago. For the Last year I have been experiencing MG symptoms starting with a weakening voice after 5 minutes, then fatigue when smiling, difficulty swallowing when tired, blurry vision though no observable diplopia, head droop in the afternoon, gradually leading to overall weakness by the end of the day. My anti-ACHR was what triggered the diagnosis it was at 54 (and the normal range is 0.0 - 0.4 I guess). My EMG was inconclusive due to the pain I experienced during the testing of my neck.

Mestinon appeared to work at first but I continue to have issues... Should I worry about ALS? Is MG a degenerative disorder? Sorry I am new to this and I am very worried...

Thanks

[Joanmarie63]

Welcome to this site and I am sure you are scared but you will find this sight a great help.

Your symptoms seem to be classic MG. I have been DXed over 18 years and the problem with MG is it is different to everyone at different times. I thought I might have had MS because I have things other than just the "weakness" but all tests still say no, just MG.

Everything you have written screams MG. Has your Dr talked about a thymectomy? Now realise not everyone has a tumor of the thymus. I didn't, but I had a fatty thymus, meaning it was spread out around my other organs and they went in and "scraped" my thymus out.

I went into remission for 17 years. Now that I am out of remission I am back on mestinon {can't take any other meds}

I hope you find answers that you are looking for and know we all understand how you feel.

[ewizabeth]

Welcome to NT!

I'm sorry about the MG diagnosis and I understand your concern. When I was first diagnosed with MS I used to wonder how it was going to progress and even if it was MS or not.

I hope you'll make some new friends and learn more about your condition. Take care and feel better soon.

[Aw3sk3r]

Thanks JoanMarie63 and Ewizabeth for you considerate thoughts and info. I have read many of the personal histories contained here and have found them helpful. This is something that has been slowly tearing me down, from the weakness stealing the things I love to do from me, or the steroids that make me feel like I'm dying, to the secrecy of trying to appear normal... and to the uncertainty of the future (even tommorrow).

I have a question as to what I should put on a Med Alert bracelet (other than name, condition and allergies).

Thanks again

[DesertFlower]

"the secrecy of trying to appear normal"

What a great way to say it! This is one of the things that is making me feel crazy. I want to shout out to everyone that I have MG and I don't care what they think. I am tired of explaining or even worse feeling like hiding the fact that something is wrong with me.

Thank you

[erinhermes]

Hey hon! I've often thought about making a shirt that says "I've had a thymectomy/MG. What's your excuse?" but my hubby thinks that it would offend too many people. LOL!

The last time I was in the hospital a teenager innocently asked me if I was pregnant - needless to say I was mortified! I always had a 22-24 inch waist - now it is 36+ and my face feels like it is HUGE!

Love,
Erin

Originally Posted by DesertFlower

"the secrecy of trying to appear normal"

What a great way to say it! This is one of the things that is making me feel crazy. I want to shout out to everyone that I have MG and I don't care what they think. I am tired of explaining or even worse feeling like hiding the fact that something is wrong with me.

Thank you

[Aw3sk3r]

Originally Posted by erinhermes

Just wanted to say hello and Welcome to the BEST SITE on the net for MG!

Your symptoms do sound like MG - at least as far as I am concerned! I am still a relative "newbie" to MG - only being a year and half into it......hate this darn disease, but it CAN be controlled and life long remission is possible!

I am very curious about what you said about the 'roids....how do they make you feel? I love them, but I am the exception to the rule in that respect! LOL!

You do not have to put on a happy face when you are upset or scared! THat is what WE are here for! Come here and vent all you want! We do know what you are going through......

When you are tired, rest. It is just that simple. When you want to cry, cry. MG is a very scary and LONELY disease b/c we (for the most part) LOOK OK, so people tend to think we are being lazy - I have learned the hard way not to push it - just not worth it for me!

Again, hello and welcome! We are here for YOU!

Erin

Hi Erin,

I am glad to hear that steroids work for you, as for me I feel as if I am jumping out of my skin, I toss and turn all night due to the sweats and jitter. I jump at every little sound now, and oh boy my stomach! (not to mention how the mestinon messes with my stomach). I hope to start the stronger stuff soon and taper off the roids. Thanks again for the welcome! This is a pretty cool community

Originally Posted by DesertFlower

"the secrecy of trying to appear normal"

What a great way to say it! This is one of the things that is making me feel crazy. I want to shout out to everyone that I have MG and I don't care what they think. I am tired of explaining or even worse feeling like hiding the fact that something is wrong with me.

Thank you

I feel your pain. I still haven't told my family yet let alone people at work/friends.

[ConnieS]

Hi Aw3sk3r! Welcome to this site...

I'm sorry to hear of your diagnosis, but as all the others have mentioned here, MG is a much better autoimmune disease to have than some others out there. Don't mind me asking, what caused you to start worrying about ALS? The AhCR figures do show positive for MG, which I wished I had. Lol.. I started off with symptoms similar to MG, but later found out that it was because I was too weak (sort of malnourished). I didnt test positive for the AhCR, nor the EMG for MG. After all the nourishment, when the weakness persisted, and spasticity and cramps came in, then was ALS suspected, and subsequently diagnosed.

Pardon me, but I do hope its MG and not ALS for you. I'll type more next time when I hav more energy~! lol..

[justdeb]

Hey, sorry to hear about the diagnosis. It is not fun, but it can be managed. With an ACHR of 54 was it, you have MG. I can't say you DON'T have ALS or some other illness concurrently. BUT I can say that if it walks like a duck and quacks like a duck.................it's probably a duck. It is not at all unusual to begin with just mestinon and have things progress to the point of needing additional treatments/meds added to the regimen. This is where having a good neuro you trust and who knows MG AND isn't afraid to think outside the box to get the best possible regimen for your case.
Again, it sure is MG. And yes you could have something else as well, but that is rare.
Deb

[AnnieB3]

MG is mainly about muscle weakness that is variable. If it would help to have the EMG redone to reassure you, then maybe you should do it (by an expert). Or you could see a neuro-ophthalmologist to have them objectively show you if you have double vision and why. It's easy to freak yourself out when you feel so bad and start thinking because you have ALS. An MG expert would more than likely know the difference between the two.

Maybe if you sought out the opinion of an MG expert, you would not only feel better but have more information you may need about the course of the disease, treatments, etc.

MG is an autoimmune disease. Mestinon only helps with symptoms; it does not suppress the immune system that is reducing your acetylcholine and making your muscles weak. Some studies do suggest it does help with the immune system but not enough have been done. The increase in symptoms may only mean that you need another treatment, as Deb said.

Please call your neurologist's office and make an appt. to discuss all this. It's hard enough dealing with a new diagnosis let alone worrying about it being ALS instead or progressing.

Annie

Here are two websites so that you can read up on MG:

www.myasthenia.org
www.mdausa.org