[draggin']

Hey all, Okay, went to neuro on Friday. He put me back on the Mesty. He explained that sometimes it make symptoms worse before it gets better. Ive heard that about pred but not mestinon but low and behold he was right and my upper body is doing much better but the legs are still on a vacation and dont seem to want to come back. He didnt feel my cain was safe enough and had me get a wlker with wheels, brakes, a seat and a basket. Basically the Cadillac of walkers...I hate it....but It does help alot. Anyway, I have two questions:
1. he's really wanting me to try low 10 day dose of pred. He says if I only do it when I have these bad flare ups, I dont have to worry about alot of the side effects, but Im afraid, if I do that, I will become dependant on them and use them more and more...hence, side effects. What do u think?

2. My MG was diagnosed as purely clinical. Neg emg and antibodies. but for 20 yrs ive responded well to Mesty and Neuropthomolgist felt my eyes and lids were a no brainer...."its MG". But I remember some saying "we'll wait to see if anything presents itself more clearly"...meaning MS. Has MS come up with any of you? I guess I worry since the legs just dont seem to want to come back this time.

Thnx all for any replies

[Joanmarie63]

Actually I had a brain MRI to check for MS because like you I have symptoms other than typical MG, the Dr. said I had lesions but will wait a year and redo the MRI.. that year is almost up.

As for the 10 day low dose pred, I just don't know. "I" can't take it but that doesn't mean it won't help you. I can't tell you what to do about that one, but I do wish you all the luck and please continue to keep us updated.

[jana]

I'm seropositive -- AChR -- have had the test THREE times (three different docs). My first MRI, right after my bloodwork came back positive for MG, did NOT rule out MS -- they thought they might have seen some demyelination. My 2nd MRI, about 2 years later, didn't show much progression, if any. I've begun some tingling in my extremities -- which can be attributed to Topamax, so I'm telling myself that MG is still my ONLY autoimmune. But, I do know several MGers who also have MS.

Like Joanmarie, prednisone is NOT an option for me.

[AnnieB3]

Hi, Draggin' I haven't been on much lately but I wanted to respond to your post. And welcome, because I didn't log on to your first post.

First, Mestinon "kicks in" and "works" in about 20 - 30 minutes. It wears off about 2-1/2 to 3 hours after taking it. So you get about 2 good hours of it!

It doesn't "take a while" to work. Maybe what your neuro meant is that the body is so in need of it, it'll take a while for it to slowly get better. You have to balance Mestinon with rest. If you do too much, even on Mestinon, your MG will get worse.

It's not technically accurate what he said about it making symptoms worse before they get better!!! Damn, I hate when neuros don't explain it well. Too little Mestinon and, therefore, too little acetylcholine for your muscles and you can still be weak. Too much Mestinon/acetylcholine will make your muscles weaker. That's why so many neuros start patients off with like one dose a day of 30 mg. Then two doses a day the next day of 30. Then three the next day. And then they might play with the dose amount or the frequency of the dose. Sometimes people need that consistent dose every three hours (like I do). Some only need it when they do more. It's different for everyone. BUT the bottom line is that the dose AMOUNT is key at first in seeing what you need.

Obviously, don't adjust your dose unless you have permission of your neuro to do so or talk to their office first.

I have known many people who have been on Pred. It can work but it can rip your body apart. Sorry, but I have to be blunt because doctors don't often tell you what can happen down the road if you can't get off of Pred. It can cause loss in bone density and fractures (and outright breaks). I know a lupus patient who had to have rods put in her hands due to long-term Pred use. It can cause Pred-induced diabetes, which may become permanent even if you get off of Pred. It increases the risk for infection. And ulcers. Wounds are harder to heal. Zits too (that's important for women to know!). It may be impossible to regain your adrenal function, even if you do come off of it. It and any diabetes can impair circulation, can lead to circulatory problems and, in severe cases, amputation. There are a lot more side effects of it, like change in pulse and blood pressure (often due to fluid changes). It can affect other hormones as well.

Alice has recently discussed Pred and the fact that it doesn't always work for all MGers. It worked a tiny bit for me but I can't take it long term (too many bad side effects).

Lesions in the brain can be caused by LOTS of things, not only MS. B12 deficiency, celiac disease (probably because of the B12 deficiency though they have recently found it to attack the brain too), tumors, etc. So unless you have an MS expert telling you what's what, how can you know for sure if they are simply making a "guess."

Did they check your MuSK antibodies too? Are you on any other meds that might interfere with the EMG (like inhaled steroids)? Did they do the EMG on the most weak muscles? And did they do a Single Fiber EMG?

My neuro told me when I first met him (the one that diagnosed me) that you think your legs are weaker because you don't walk on your arms! Too funny. Mestinon does not affect all muscle groups equally because they aren't all equally weak at the same time. Just like acetaminophen might get rid of a mild headache but not a raging backache. And if you take too much Mestinon to get your legs stronger, you may "overdose" the other muscles.

One more problem with taking Pred before you are "definitively" diagnosed, besides that it's dangerous to give without defining what's wrong, is that any tests you have from now on - like a SFEMG - will not be accurate. Pred will make any test, even the antibody tests, look normal. This is one of my pet peeves about the diagnostic process for MG. If someone does not get ALL the testing they need to figure out what's wrong and they get a drug, another neuro can come along and say there's nothing wrong with you. Then they make you go off your meds which is, again, dangerous. I like the horse before the cart so I know which way my disease is going!!!

I hope you can talk this situation over with family or friends and really figure out what is best for you. Maybe a second opinion would be a great idea, with an MG expert. Write down any questions you have too. Maybe keep a log of symptoms, Mestinon schedule and what it does for them too.

Best of luck on figuring all this out. It really sucks, doesn't it?

Annie

I looked at your first post. You were taking 60 then 120 mg. of Mestinon, in alternating doses? Yikes. Up and down is not good for MG. Slow and steady is my MG mantra. And Mestinon Timespan can be okay for some people but it can also give you unreliable dosing (depending upon lots of factors like GI motility, metabolism, etc.). Again, starting low and slowly increasing works for a lot of MGers, to see where your optimum dose is. I still think a 2nd opinion is warranted. Not because I don't think you have MG but you need to know for sure and seeing an MG expert is a wise thing to do.

I've used those store carts for a few years now. It's just fine to save your energy for when you both want and need it!!!! Don't feel bad about getting the most out of your body by taking it easy.

[BillF]

Annie had great advice and is in line with what all of my docs think. The prednisone issue is not to be dismissed. Two new eye lenses (cataracts), a new knee joint (deteriorated cartilage), over two inches loss in height (broken vertebrae), numerous blood clots (PEs) massive weight gain all proved that to me. That said, I also think it saved my sorry body. I am pieced together now and in remission and look "normal" (whatever that is).

When I was heavily dependent upon Mestinon, I had to set a timer to remind me to take a dose, so I didn't get to the point where I knew I needed a dose. That worked well for work when my energy expenditure was relatively constant. Sometimes I adjusted according to demands (with my docs approval, since he knew I understood my body and knew medicine).

Bill

[draggin']

Thnx so much for all the info.....you are so right. exactly 3 hrs after dose, it wears off and the Dr also said to keep my dosage equal. I think you hit the nail on the head when you said taking more to help one set of muscles may overdose another....I think thats what was happening. I was taking more and more trying to get my legs to respond and my face didnt want to move more and more. So I think Im on track now with the mestinon and Im just going to hope the legs snap out of it soon.....dont think Ill try pred