Newbie Question
 

Hi Everyone! Newbie Sue here.

I have been reading many of your posts and have learned so much from you folks willing to share. Experience is always the best teacher, but I am sorry so many of you have gained your knowledge at such great hardship.

Luckily, my neuro said on our first meeting, "I don't need tests to tell me you have MG." With that they gave me a pill and retested my strength in 20 minutes. That was when I discovered Mestinon works for me (they call it the Hercules pill in the office!). Bunches of tests were run (they wanted to rule out LEMS) and I didn't have any aCHr antibodies for MG as it turned out.

Even so, they believe it's MG. My case is very mild (especially compared to what I have been reading here) and I am responding super well to minmal doses of Mestinon 3x daily. From what I've learned here, I had a remarkably easy time getting a diagnosis!!

I have read this is a very 'individual' kind of disease - - I think someone here said it's known as the snowflake disease. I'm interested in progession mostly. Does this always, sometimes, or rarely progress with age? Is there any relationship between the way it starts and where it goes? Or is it really just a 'wait and see, everyone is different' thing. I'll ask neuro at my follow up next month - but any info would really be appreciated.

I know there are no guarantees - just looking for 'rule of thumb' info if there is any.

Thanks!! And here's wishing today is a good day for you....Sue

Hi Sue,

Welcome to the group.

Sadly, this disease is different in everyone. It really is a "wait and see" kind of thing. Most progression happens in the first year or so; but it *can* continue to get worse after that.

You should ask your neuro to test for MUSK antibodies if you are AChr neg (if he hasn't already). Your response to medication probably nails down the diagnosis for you anyway, but it is always best to have more information.

Hey Sue!
 

Hi Sue,

Welcome to our little group! I am so happy to hear you found a neuro that gave you a diagnosis of MG and didn't take it back when your labs were neg. Sadly, your case is the exception and not the rule. While I believe the neuro's are starting to change their way of thinking, far too many are still suffering with this disease and not receiving the meds and care they need. Everyone is different with MG and it is so unpredictable. I have had it for 10 years and I would say my symptoms peeked at about 2 years when I was finally diagnosed in 01. I am so glad you have responded so well to the mestinon. If you don't mind my asking, what are your symptoms and how long have you had them? I wish you all the best and hope you continue to do so well. Sorry I couldn't be of more help, but I'm sure others will have more to add.

Take care,
Pat

Wow - great welcome! You're right - -this is the best site on the net! Thanks for quick responses and support!


Pat, you asked about my symptoms.
They started out about 4 years ago. Very active person - thought I was getting out of shape when I began to notice I couldn't hang onto grooming brushes when I was taking care of my horse. Arms would get real heavy - no pain, just heavy. But if I took a break, I could finish up. It got worse over time, my breaks got longer and I began to notice that any repetitious or strength activity was tough. Summertime was awful, but plunging arms in a bucket of ice cold water was/is very refreshing!

Then, in late 2006, my legs (esp. the right) went fibrotic. It had been swelling and getting heavy but I forgot to stop until I got a stasis ulcer. Anyway PCP said lymphedema and I went into therapy for 8 weeks, then into heavy duty compression hose and a very low salt diet forever.

Funny, but it has been since then that more challenges crept in. Each January, I would do an assessment - - and each January I could do less. I used 'scientific' measurements - like how many batches of Christmas cookies could I bake in a day, how many holes of golf could I play before I dropped the club! But there never was a rhyme or reason from one day to the next. I thought it was the lymphedema because they had said mine was primary tarda (genetic, systemic) and I may need to decongest the arms at some point.

Anyway, this last January, my wonderful hubby sat me down and expressed his concerns. Apparently he was seeing many more 'assessments' than I was willing to see. And even I was noticing that my stamina was awful compared to normal. I used to walk at least two miles a day - and over the last 18 months it had become an occasional crawl around the block - - with me arriving home breathing heavy!! So the search was on...and after PCP, rheum, and neurologist #1 (total waste), I got to neuro #2 who is/will be my doc from now on.

Curiously, neuro seems to think that the lymphedema will improve with time. Thinks that Mestinon muscles will better support the lymphatics so they can keep fluid from building up. Would that be great!

Pat, have you had to increase or change meds over the years? I have read that Mestinon levels have to be increased to continue to be effective in some folks - and for others, it stops being effective. Thoughts?

Thanks for interest and help
Sue

Hi Sue,

I wrote a long reply to you and apparently I timed out and it went poof. When my eyes are not cooperating it takes me so long to type. Well, I'll give you a shorter version. Your story sounds so much like mine and many others. I had ocular & gereral symptoms at the same time. When I was diagnosed I was prescribed Mestinon and the neuro wanted to start me on pred, but I chose to take only Mestinon. I have trouble with many meds, so when he wanted to try another drug, I forget the name, I didn't take that either. After about a year, I started getting worse and he highly recommended a Thymectomy. I had 3 days of plasma pheresis followed by surgery. I continued on the mestinon as often as I could tolorate the side effects and saw small improvements every day. By year 2 and 3, I saw the full benefits of the thymectomy and improved by 70 to 80 percent, which is wonderful. I still have bad days, but they are few and far between compared to having them almost daily. I remember reading that some people need to have their mestinon increased or may have to stop it for a short period of time and restart it. I don't recall reading here that anyone has had to do that. You may very well do just fine on the dose you're taking for a long time. I'm sure you and your neuro will discuss that as you go along. It would be wonderful if the mestinon improved the lymphedema! Any questions you have about meds or treatments just ask and someone here will be happy to help you. There are may posts as well with this info. This is an incredible site and everyone is friendly, supportive and will always be here for you. We are all MG'ers, so we understand.;) Take care and keep us posted.

Hugs,
Pat

Hi Sue,
Welcome to the group - I'm glad you were able to be diagnosed quickly. Knowing what is going on is a huge part of dealing with MG. Just being aware of your body can make a huge difference. You said your neuro told you that you were very mild - that's good news, but be aware that things can progress (but don't always). Like everyone said, MG is very individualised. I was very mild when diagnosed and my neuro said I'd only need Mestinon for the rest of my life but I got worse within about a year and a half. You asked about changing meds - I hope the mestinon will be enough for you. When I went from mild to moderate MG I started taking more mestinon and then was put on steroids and immunosuppresants (150 mg of azathioprine). Things have been looking up lately and I am able to lead a virtually "normal" life. I'm still on steroids (40 mg alternate days) and seem to be stuck (i.e. I'm not able to reduce any of my meds more).

Are you still riding? I've always wanted to take it up, but I'm nervous I wouldn't be able to get on /off a horse! I'm a bit of a klutz. Good luck with everything!
~Kathy

Hi Sue,

Welcome, this is a fantastic site and if you have read my post "does this sound familiar" you will realise what a great support your fellow MG'rs can be.

As everyone has already said this disease is highly individual and most Drs read the symptoms off a list in a text book. If yours don't fit you dont have it.

I was diagnosed in October 2007 with MG only to have that Diagnosis taken away in October 2008, because my blood tests are negative. I respond to mestinon but sadly now its not enough and until I can convince someone to give me a diagnosis I fear I will be in this situation for quite sometime.

Im really pleased that you have been diagnosed ( although its a crappy disease to have sometimes!).

I wish you well

Rach

HI Kathy!
No, I don't ride anymore. My (last) horse and I are growing old together! I have had her since she was 3 - and she just turned 27, but she has been retired for a few years. Many years ago I did a lot of competition riding (hunter/jumper) - that was a blast. Now I just feed her carrots and give her baths!!

Thanks for info - no one ever knows what future holds - but I like being aware of the possibilities (good and bad). Never did like surprises much.

Have a good day
Sue

Nice to meet you Sue !
Mary

Hi Sue and welcome. I think that MG is such a difficult disease to pin down. And just when you think you know how far to push yourself it changes again. I have had a lot of trouble taking mestinon personally. It gives me migraines, so I take a really strong preventative in order to take it. I think I am alone on the migraine thing tho. But I do have to take a lot more of it now than when I first started taking it. Well again Welcome and I try to write down all my questions that I come up with for doctors on a notepad in my purse. That way I remember them all. Good Luck and keep coming back.

Thanks for warm welcome! Sorry about your migraines. I had about four as an after effect from adult mono. I had never had a headache in my life before then. Never even taken an aspirin. HORRIBLE, debilitating, outright nasty migraines can be. Only the four - - and that was many years ago. I am very lucky - - and am grateful.

I am about to 'celebrate' my one week aniversary on Mestinon. Yeah! Right now I am convinced it is a wonder drug for me - - and really hope it stays that way! I have started a MG diary of sorts. My neuro has encouraged me to 'experiment' within limits with the timing and dosage of Mestinon - so I'm keeping track of that.

I wished I had found this forum during the 'searching for what's wrong with me' phase. Honestly, there were times when I wondered if I was just being a lazy, whiny baby when I would have those 'lower than a snake's belly' kind of days. Especially when it turned out the next day was a winner! (hehehehehe)

Anyway, thanks to all for sharing and encouraging words. Validation is a beautiful thing!! Someday, my experience will be of help to someone else as your's are now for me.

Sue

Hi Sue, and welcome. Sorry I'm so late in joining, but I recently was able to return to work (very very close to full time) and I'm trying to conserve energy for that.

You may find as you learn more about MG and look back, that you have had it longer than you thought. Mine started years ago, but MG can go into remission on it's own early on and that's what mine did. I can recall times though that it was flaring and I didn't pay much attention because it wasn't debilitating then. The old school of thought was that it generally progresses for about 20 years, then hits it's peak and levels off. There are periods of spontaneous remission in there, and the symptoms may or may not get progressively worse. That's where the difference comes in. Some people may never progress to a debilitating level and I sure hope you're in that group!

You seem to have a strong awareness of your body, and a wonderful outlook and both these traits will help you alot with MG.

Glad you have joined us! Look forward to learning more about you!