[Jewel969]

I have been experiencing muscle spasms in my back and mostly my neck...I awoke crying feeling like a rod was up my neck into my skull a few weeks ago...my neck is always sore now and I get many headaches....I also have aa lot of ringing in my ears....and a lightening bolt pain in the back of my tongue shooting down my throat...horrible pain....last week I awoke and my left eyebrow was significantly lower then my right eyebrow...then the next day my right eyebrow and lid dropped suddenly and I feel a lot of pressure behind my eyes....I went to the hospital and the doctor didn't even examine me...very frustrating....I also have numbness and burning in the left side of my face....I have lupus and sjogrens....I am thinking I have MG or Ocular MG.....can anyone tell me if they had similar symptoms at the beginning...because I have no idea what else this could be and feel helpless....I am to see a neurologist next month and my regular doctor this week....I went to my optometrist when this happened to ensure my eye pressure was o k and he did a full exam of my eyes and said they were fine.... Please share your original symptoms with me.

Thank you!

[juliejayne]

Sorry, none of those. My first symptom was Double Vision... never gone away. Followed a few weeks later by weakness in major muscles.

[FREDH]

Originally Posted by Jewel969

I have been experiencing muscle spasms in my back and mostly my neck...I awoke crying feeling like a rod was up my neck into my skull a few weeks ago...my neck is always sore now and I get many headaches....I also have aa lot of ringing in my ears....and a lightening bolt pain in the back of my tongue shooting down my throat...horrible pain....last week I awoke and my left eyebrow was significantly lower then my right eyebrow...then the next day my right eyebrow and lid dropped suddenly and I feel a lot of pressure behind my eyes....I went to the hospital and the doctor didn't even examine me...very frustrating....I also have numbness and burning in the left side of my face....I have lupus and sjogrens....I am thinking I have MG or Ocular MG.....can anyone tell me if they had similar symptoms at the beginning...because I have no idea what else this could be and feel helpless....I am to see a neurologist next month and my regular doctor this week....I went to my optometrist when this happened to ensure my eye pressure was o k and he did a full exam of my eyes and said they were fine.... Please share your original symptoms with me.

Thank you!

I have to agree with juliejayne, my symptoms were eye droppy, speech, and arm muscle weakness. No pain at all.
FREDH

[southblues]

I have pain in muscles that I push. I think that normal life causes me muscle pain for the same reasons that a heavy workout causes pain in regular folks. My back gets very painful after I have to stand or sit up for hours. I feel that is it just muscle soreness because the muscles that actually work have to do double duty.

[AnnieB3]

Hi, Jewel. Welcome!

Do you have any vascular involvement with your lupus? Did they check you for any of the clotting disorders sometimes involved with lupus? Do you have a good rheumatologist?

Lupus truly sucks, and since it can affect nearly any part of the body, it tends to "surprise" you, even if you've had it a long time.

MG is often called a "head and down" disease, meaning that weakness often begins in the muscles of the head and neck.

I had trouble chewing food, where my jaw would be weak. My throat/tongue bothered me, too. There was obvious ptosis of both the eyelid and eyebrows. I made gasping noises when I was sleeping that would wake me up. I had episodes of choking, not necessarily while eating or drinking. I also had generalized weakness and shortness of breath.

MG affects the skeletal muscles. They become weaker with activity, but you can also have a baseline weakness that is less than what a normal strength would be. It becomes relatively better with rest or sleep and drugs.

Your internist or a neurologist can do the AChR antibody test and the MuSK antibody test. They can do a clinical exam to test for fatigable weakness.

You could see a neuro-ophthalmologist who can check the MUSCLES of your eyes, not only your sight and optic nerve (which I suspect is what your eye doctor did). They can do MG-specific eye tests, checking for double vision, etc.

When muscles become weak, they can hurt. although pain is not a primary symptom of MG. I remember laughing in a meeting at work and the back of my head and neck were in such cramped up pain! I didn't even realize yet that I had MG. MG is a disease whose symptoms can be easily dismissed as working too hard or whatever. And pain can be a secondary symptom, especially if it isn't treated.

The best thing to do is to be tested. A neuro can also do a RNS or EMG or Single Fiber EMG on your muscles if MG is suspected.

Don't worry too much in the meantime. If you do get weaker, then seek out help right away. If you become short of breath, can't swallow, or can't move due to weakness, then you should go to the ER (or dial 911).

You should also know that if you do have MG, heat will make you worse. So stay out of the hot weather until you figure out what is going on, okay?

I hope you get answers soon. If you have more questions, fire away!

Annie

[huntress]

My first symptoms that I can remember was arm weakness. See I worked in a freezer area at Wal-Mart and would wash the doors at night sometimes. The first thing I noticed that my arm would become so vary weak so much that I couldn't lift it. Rested it then I could lift it again.
Then it went to my legs. I was falling off stairs, backwards...off the stools at Wal-Mart
Then my vision, double and blurry. I was driving home with one eye.
I found I couldn't turn my key in the ignition.
Then other things started to go. Speech and swallowing...That was when I went to the ER and was 'get this' diagnosed with acid reflux. thank the Lord they sent me to an ENT doc which looked at me and sent me to Dr. LaComte, a neurologist who within 5 minutes told me. You have myasthenia gravis....

May Jesus be with you on your journey, may he lead you the right path for proper diagnosis. and Healing!

[Jewel969]

Thank you sooooo much for your very informative response....my regular doctor is having me go for bloodwork which I believe is the AcHR antibody test...will let u know what develops...thanks again!!!

[neutro]

Hi Jewel,
My first symptoms chronologically were: general fatigue, swallowing and chewing difficulties, double vision then arm and neck muscle weakness...
No pain at all.
Maurice.

[santhipeace]

hi...i just dont know or figure out what i have..went to the hospital with one side droopy eye lid. and after full eye test and the doc checked my gag was weak... and suspected i have mg. i lost some weight cause could not swallow food. so 2 weeks ago went to a nuero and after some test .. blood test result will know on 16 this month . wit mestinon i feel less tired..but why this weird back ache .. is that connected as well..

[pingpongman]

Welcome to our wonderful group. Except for the back pain all the rest sounds like MG to me. I'm sure someone will come along and address your back issues. Keep in mind even if your blood work comes back negative doesn't mean you do not have MG.
Mike