Sound familiar to anyone?
 

Good evening All,

Im hoping for some kind replies. I've had mysterious symptoms come and go since the fall of 2014 and no one has figured it out. Not a pleasant place to be as I'm sure many of you know. Initially my neuro mentioned MS, but that no longer appears to be the case.*

After a period of 7 months or so pretty much symptom-free, things are back. The last episode (fall 2016) brought muscle weakness in my arms and in my upper back. I could hardly cut up potatoes, for example, prepare a meal because the weakness was so bad. It stopped after 2-3 weeks.*

In the spring of 2015 things were at their worst. I had episodes of leg weakness where just the thought of walking to my car in the parking lot at work exhausted me, or running to the store to pick something up. I also had episodes of severe pain in the lower back and hip area, and sometimes thighs, that was also unexplained by MRI. Also aching of my limbs. Terrible.

Now I'm having strange weak feelings that come and go in my ankle/very lower leg area and my wrists/lower arms. The thing is, I wake up with it sometimes, and I understand that with MG it improves with rest. Now I'm again experiencing that weak muscle feeling in my mid-upper back, when I say this I mean the muscles below the blades. I was doing my hair last week and after my arms and wrists ankles felt very tired, and my back. Then it got better.

Now my left eye looks smaller than the right. The lid is clearly lowered and shrinking the look of my eye. At the moment, I can actually feel it and the muscles right now.

When I wake up they both look small, but then the right one improves but I suspect it's still smaller looking than normal. I first noticed this when I saw a photo of myself taken last year with a group of family. My eyes looked tiny! It made me look like my face was puffy - maybe it was - but never have I seen myself look like that in a picture. I was diagnosed with dry eye hot long after that, and my eyes had been bothering me from that, but it's not so bad lately at all.*

I also get stabbing pains, which were worse in 2015, but I still get them on occasion. Usually they're in my hands, feet, thighs.

Also, I've had a few days where I feel it's hard and tiring to breathe, but I thought it was allergies. It feels like I wish I had an inhaler when that happens.

Does this sound familiar to anyone, and if you have weakness, does it come and go and differ one month or year to the next? Is it only after exertion or can you also wake with the sensation?

Due to my eye, etc. I'm wondering if anyone thinks it's worth it to be checked for MG. This is one thing that has not been looked into. I do not have double vision, except for ghosting when I look at lights which I'm told is the dry eye or the early cataracts I have. Ugh.*

Do you always have double vision or can you just have a drooping eyelid?

Sorry for all the questions, I'm just wondering if this sounds familiar and if MG is worth looking into.*

Thank you!

Hello Veritas
Welcome to our Thread. I am sure what I'm going to say would be ask by most of our members.
We need background info about your problems.
Do you have a regular doctor, if so what type?
Have you had any diagnosis of your problems?

We all would need that to offer much insight to what you feel.
You have some symptoms which sound like MG, but others which are not usually associated with MG.
Please write back and give us more to work with, and I'm sure you will find some helpful answers.
Thanks FREDH

Hi Fred,

Thank you for replying. My history is above although it's not all-inclusive. I've had brain and spine MRIs, neuro exam, regular EMG (normal), Sjögren's syndrome early profile, blood work, etc etc and nothing was found. My main doc was the neurologist. Finally fibro was mentioned by another doc (which they do when they can't figure it out - and it doesn't fit).

I've also had weak hands or wrists for possibly 20 years...at least where I can hardly open a bag of chips, and sometimes buttons or things like that are difficult.

Yesterday I did some housework - distinct and vacuuming, and this week was stressful with work and hands to the keyboard all day almost constantly, and today my arms and hands feel exhausted, and the lower part of my legs/ankles feel tired. This is something that comes and goes, and I haven't had since last fall. One day this week I had to lie down as my back muscles got so weak from sitting on the floor. I passed out asleep.

I crashed after work and napped, I have other things I wanted to get done tonight but I feel physically wasted.

I just wonder if it's worth looking into MG.

Many thanks. :(

Does every post/reply get screened? I don't see my post and it took a bit of energy to type right now. :(

Hi there
Our Community Guidelines explain the initial moderation of new member posts. It is also mentioned in the welcome email new members receive.

https://www.neurotalk.org/community-...-8-2015-a.html

Hi, Veritas. Welcome to the NT forum!

Do you have an internist? You may want to have some basic testing done, if you haven't already. Basic testing for anyone with a suspected illness that involves weakness are vitamin B12, vitamin D, thyroid, metabolic panel, and CBC.

MG is all about weakness that becomes worse with activity and better (relatively) with rest. You sound as though you have some weakness that fluctuates, or is fatigable. A neurologist can easily order the Acetylcholine Receptor antibody test. There is also the MuSK antibody test, if the AChR one is negative.

I would highly recommend that you keep a journal. Write down what day and what time of day your symptoms occur. Are they worse after an activity? Are they worse after an infection, stress, lack of sleep, or being out in hot weather? Describe what the symptoms feel like, too.

Take a photo of your face first thing in the morning, and then later in the day. Make sure you use the same lighting, head tilt, etc. Even take them in the same exact place. If you see an obvious droop, then you could see a neuro-ophthalmologist for evaluation of the ptosis. If one eyelids is dominantly droopy, pull up on the eyelid for a few seconds. Does the other eyelid droop? That is called "enhanced ptosis" and is indicative of MG.

Put your pointer finger about 14 inches in front of your eyes. Without moving your head, move your finger to the left and to the right. Do you see one finger or two? If you see two, close one eye. If you see one finger after you close one eye, you have double vision. Specifically, that is called binocular double vision. MGers have that type.

You may think what you have is ghosting. Only an N-O can fully evaluate that. I thought I had only blurry vision due to my astigmatism, but it was double vision.

If you are having trouble breathing, you should be evaluated by a pulmonologist. They can do specific breathing tests (MIP and MEP) that can evaluate a cause of the breathing trouble.

If you do have MG, you have to be very careful of what you do. MG can become worse rapidly, especially if it is not adequately treated or during the summer/hot months (opposite in the Southern Hemisphere!). If you can't move, breathe, or swallow well, you should go to the ER. Dial 911 if really bad. When MG patients become worse, they can go into a MG crisis, which can be life-threatening. Don't be scared by that, just be prepared for that as a possibility. Don't overdo or push your body right now.

Please do see your neurologist about MG. Some neuros don't think about MG, because it is not as well known. But once they think about it, they have an "ah-ha" moment. There are other diseases that cause weakness, but only MG, LEMS, and a CMS (congenital myasthenic syndrome) cause fatigable weakness.

I hope you will find some help soon!! You may have more than one thing going on at once, which is not uncommon with those who have an autoimmune disease. Ask as many questions as you need to, okay? The forum has been a bit quiet lately (it's summer!). Take it easy.

:grouphug:
Annie