[lotusflwr952]

Hi all,
I'm new here and have a few MG questions. I am waiting for an "MG panel" that my dr ordered on me to result, but have a few questions in the meantime.

I know that a hallmark of MG is that you feel better after resting, but my question is how long does that take? My muscles get tired VERY easily. I do tend to push myself, but then I am tired and even more easily fatigued the next day or two (depending on how far I pushed myself the day before). Sometimes I feel better after a short rest (if I am only slightly weak), sometimes it takes a few days to feel better if I pushed myself too hard.

Also, I'm not always fully charged when I wake up. I am on Cymbalta and I think that is causing me to have night sweats. I'm waking up in the morning very very hot and overheated; I think this might be why I don't feel great getting out of bed.

Another weird thing is that when I wake up (hot!), my left eyelid stays shut when my right opens. Not glued shut, just doesn't open. It does open slowly as I get out of bed, cool down and get going. I have been complaining that my eyes feel like they have to work to focus and everyone tells me lately how tired I look. I think this is because my eyes are not super droopy- just droopy enough that I look like I have a headache or am tired.

What does your muscle fatigue feel like? Sometimes, my muscles just feel tired. I had to cancel a date with my friend last weekend because my arms felt too weak to turn the steering wheel. Other times, my muscles shake (like at the end of a really strenuous workout). Is this what it's like for you guys?

Sorry for the long post- hope you all are well and thanks to anyone who has the time to reply.

Barb

[Kitt]

Welcome lotusflwr952

[AnnieB3]

Hi, Lotusflwr! Welcome to the forum!

MG is "relatively" better with rest and it all depends upon how your MG is and what drugs you are on (and you aren't on any yet!).

Do not push MG, because, if you have it, you can end up in a MG crisis! If you can't swallow, breathe well or move well, that's an emergency. It doesn't matter if you have a diagnosis yet. Dial 911.

MG can be deceptive and the weakness can increase so slowly that you think you're okay when you're not.

When I go out and run errands, I will be pretty wiped out for the next two hours or so. The next day I can be generally weaker than I was before running the errands. Day two I call "two day payback." I don't know why the second day is worse, but it tends to be, at least for me.

MG is fairly unpredictable and it can surprise even the most veteran of MGers!

Cymbalta is known for causing night sweats. No matter what the cause, it's not good for MGers to be overheated. It makes us much worse. Might I ask why you're taking Cymbalta? Did you know that the "sleepiness" associated with MG can make a person feel as though they are depressed?

If you have rapid eye movements while you sleep, that use of the eye muscles alone can cause them to be closed when you wake up! And muscles become weaker when we sleep, too. That's why some MGers need to have a BiPap or oxygen when they sleep, because they can have hypoxia (not enough oxygen saturation).

Eyelids can either be shut too much or open too much. It depends upon which muscles are affected. There are muscles that specifically open and close the eyelids. The fact that you have fatigable eyelid muscles makes a MG diagnosis more probable.

MG weakness can present in a bunch of ways.

• One of the first signs of MG is the need to take a nap.
• You can feel as though you are depressed (as I said).
• Your entire body can just feel worn out.
• The body can feel as though it's walking through quicksand.
• Your legs can feel like lead weights walking up stairs.
• Muscles can be so weak that they cramp or spasm. If that happens to your breathing muscles and you can't breathe in or out well, it's time to dial 911.
• There are 640 skeletal muscles and any of them can feel weak (hopefully not all at once!). It mainly depends upon which muscles you use the most.
* Sometimes muscles can feel achy, but that's often if you're on steroids or withdrawing from them.
• Weakness of the throat/neck muscles can feel similar to an allergic reaction, as if your throat is "closing."
• Laughing too much or sitting too much can cause your neck/head muscles to feel as though there's a vice around the back or give you a tension headache.
• Ears are affected, too, and you can have hyperacusis (sensitivity to sounds).
• Hands can feel stiff or cramp up.

There are a LOT of muscular signs of MG and that list is only a snippet.

Please don't push yourself. In fact, you might need to rest and sleep even more now. You don't want to end up in an MG crisis. With MG, the worse you get, the more time it takes to "bounce back."

It might be worth a call to whatever doctor prescribed the Cymbalta to discuss what it's doing to you and that you might have MG. Explain that anything that heats up the body is not good for MG.

I hope you get answers soon. I'm sure you'll have more questions. There's a lot to learn about MG. Some drugs do make MG worse (i.e., Quinolones).

www.myasthenia.org
www.mdausa.org

It's hard facing down a disease, but it's actually a relief when you find out what is causing you to feel so awful! If you have MG, read up on the possible treatments for it. There are side effects to all of the drugs, although Mestinon has the least of them (for most people).

Take it easy!!

Annie

[juliejayne]

Annie,

Thanks for that list, there are a couple of things on there that I had not seen listed before.

Also I am interested that you said that

When I go out and run errands, I will be pretty wiped out for the next two hours or so. The next day I can be generally weaker than I was before running the errands. Day two I call "two day payback." I don't know why the second day is worse, but it tends to be, at least for me.

Does this apply then even if you are on meds. Now that I have Mestinon I was thinking I could start rebuilding my strength that I have lost over the last 10 months. But a day out (now possible) does leave me feeling pretty tired the following day. Do you think that is something that we have to live with or is it just that I am 10 months 'out of condition' and pushing too hard?

[lotusflwr952]

Hi Annie B-
Thanks for much for the info! I am on Cymbalta for nerve discomfort (tingling/stabbing/burning) in my legs that I have been experiencing off and on since April. It was worsening when I got to see the neuro in August so he prescribed it for me. It has helped with the nerve discomfort, but my muscle weakness has gotten progressively worse. Not sure if it's because of the Cymbalta or just a coincidence. I am still adjusting to taking it, so I'm hoping the overheating/sweating stops once my body adjusts.

When I saw the neuro in August, he and my GP were working me up for MS due to weakness, tingling and shock-like muscle/nerve pain. My weakness at the time was focused on my left arm and more of a always a little weak feeling. MRI of brain slightly positive, but they couldn't rule MS in or out (small changes that could have also been due to migraines- which I never had until recently).

Over the last few weeks, my weakness has changed from a subjective "feeling" weak to obvious muscle tremors after use. While I'm distressed that I'm getting weaker, it's strangely "nice" to have a problem that my dr can easily see.

I noticed something on a post from about a month ago about dilating drops. I have been having problems with my eyes for a few months and my dr was checking me for optic neuritis (negative). She dilated my eyes and sent me to the waiting room for the meds to take effect. Weird thing- when I was sitting in the waiting room I got the sudden feeling like I couldn't breathe and my throat felt like it was starting to close. I got scared thinking I was having an allergic reaction. Thankfully it passed after about 10 minutes. I read in another person's post that they hated to get the eye drops-- wondering if the problem I had is common in MG patients? I asked the Dr about it and she said she had never had a patient complain about that before. I was already feeling slightly crazy for seeing YET ANOTHER dr, so I didn't press it.

Another weird thing that may be explained by possible MG is my consistently low creatinine level. I have been between 0.3 and 0.5 each time tested. One dr actually questioned me about anorexia/bullemia. My diet isn't great, but Lord knows I eat When I was reading up on MG, I noticed that a low creatinine is not diagnostic of MG, but not unusual in MG. Do you have experience with this?

Thanks again for all of the info- you really cleared up some things that I thought may mean that I don't have MG (like not feeling completely normal after short nap and eye droopy/tired in the morning).

Barb

[AnnieB3]

Barb, Did your doctors check your Vitamin B12 level?! If not, please ask your primary doctor to do that. Slight demyelinating changes in an MRI can be caused by a B12 deficiency.

I feel that way every time I go to the eye doctor. Have you ever heard of Atropine? That is usually in the drops you're given. It does the opposite of Mestinon. In other words, it can make someone with MG worse, especially in the eye/neck/throat area. It also affects my breathing. My MG gets worse within the next day after I have them.

Doctors don't know everything. Even my very good ophthalmologist missed my ptosis (I've had MG my entire life, but diagnosed in 2000/2001). You might want to tell your eye doc that Atropine is particularly bad for MGers not on drugs yet!

I've also historically had a very hard time coming out of anesthesia. Yup, it can make MGers worse, too. As can some other drugs.

Minor side effects of a drug usually wear off within a week or two (Mrs. D could tell you for sure). It's been 7 months! If you have a B12 deficiency causing nerve pain, Cymbalta won't help, only B12 will! BTW, Neurontin can make someone with MG worse and has been shown to bring it on in some people!

If you have MG and if you have a B12 deficiency, it could be that the Cymbalta isn't what is making you worse (besides the side effects), but the B12 deficiency. That's a lot of "ifs," but you need B12 to make acetylcholine in the body. My MG became worse when I had my deficiency back in 1997-1999, although I wasn't diagnosed with MG yet. It just became more noticeable.

Some things can cause neuropathies/paresthesias to become worse, such as MSG in foods (naturally occurring in tomatoes, too), and too much B6 in supplements. You could visit the neuropathy forum here for more info, or keep asking questions here!

This is only anecdotal, but my creatinine has been low a couple of times in the past. Anyone else?

You might have more than one thing going on, which is not uncommon with those of us who have autoimmune diseases. Sometimes doctors have tunnel vision and are looking for that one "magic bullet" disease to explain all symptoms. At one point, I had three conditions at the same time. It amazes me how bad some doctors are at diagnostics! No offense to anyone's doctor, but that's been my experience.

JJ, if you begin to see a pattern of feeling worse after you do activities, then you have to adjust your "resting" time after that to make up for it. Some people can gain back strength or conditioning, but I can't say how you'll do or not! Just don't push your body, and alternate activity with rest (and common sense).

Annie

[southblues]

My creatinine also runs low.