New Member
 

I have so many questions. But I will tell you what has happened so far.
In May I was having some pain in my right ear (have had vertigo for about 10+yrs) and my right eye felt funny and my eyelid would droop. I went to my ENT at the first of June. I had an abnormal reading on my right ear and my eye really had her concerned. She ordered an MRI, chest x-ray and thryoid scan (I have had large thyroid nodules, had a partial thyroidectomy in Nov. 07). Everything came back normal. She suggested that I go see a neurologist. I really couldn't see the reason for this because everything came back normal. She had mentioned something about MG when she was having me blink my eyes. I didn't think much about it but went ahead and made an appt. with a neurologist.

Saw the neurologist at the first of July and after his examine he told me I was an "odd" case. He told me to do some neck exercises because my neck seemed stiff and he ordered some bloodtests one of them was for MG and the others were for thyroid levels. All came back normal. By this time I had not noticed how weak my arms had gotten. I would sit at the computer with a clip board in my lap to hold the mouse and keyboard because my arms would kind of burn and feel weak after after about 10 minutes. I continued to due the neck exercises which seemed to make my eye worse and the left side of my mouth would drop a little. I wasn't due to see him until the end of September.

The end of July I had to drive about 45 minutes to my ENT to pick up some drops. When I got out of the car I realized I could barely step up on the curb. During the drive I had noticed that burning feeling in my right leg. I then drove to work and called the neurologists office who informed me that they were booked and couldn't see me until my appt. at the end September. So I found another doctor. I saw the new neurologist at the first of September.

When I saw him I had been having problems with my arms, my walking was odd and slow. My right eyelid drooped and the left side of my mouth was now drooping. He said he didn't know what it was but was but would be sending me to a teaching hospital. They got me in at the first of October. I went in and they ran me through the whole neurological examine and an EMG (normal). The doctor then came in and told me it looked like MG. They ordered the bloodwork for MUSK (still waiting for results). The neurologist also told me that all the tests can come back normal and I could still have MG, but they would have to run some other things just to make sure it wasn't something else.

I was started on Mestinon last Thursday. I haven't had any ill effects from it yet. It does help my facial muscles most although I wish it helped my arms and legs more.
I am now going into my 4th month with my "new" body and I am still trying to cope and learn how to ask for help. I was always been one of those people who would always help others but never wanted anyone to help me. I hope I get a definite diagnosis soon but I may not.

I wanted to ask if anyone else has that burning feeling in your muscles while you are trying to do things (drive, type, fold clothes, clean, etc)?
Also wanted to ask, does it get easier dealing with this? Most mornings I wake up and think that "it" has gone away and then after walking around the house and getting ready for work my legs wobble, my arms are heavy and my face is messed up.
Hope I haven't rambled on to much. Thanks for reading-Mon

Hi Moni,

Welcome to Neurotalk!

I have experienced the burning feeling you're describing, mainly in my arms. I also had burning feelings in the palms of my hands and feet. I had this feeling after getting a virus, which was accompanied by a very high fever (103.5 for four days) and this also seemed to precipitate worsening muscle weakness. I get a lot of trembling in my arms and legs if I've 'overused' them.

With regards to whether it gets easier, it's hard to say. For me, it got a bit worse, and I'm still struggling with finding the right meds. in terms of controlling my symptoms. I had a thymoma, which was removed this July. I guess I'm still fairly new. My worst symptoms are in the facial region (weak tongue, palate, face) and also chest. Plasmapheresis helps me a lot, but it's invasive.

I also hope that you get a diagnosis soon! I know how scary/life-changing these symptoms can be! Know that you have a very supportive, new group of friends here ready and willing to help you out, 'cause they know just what you're going through! You're not alone.:hug:

Welcome Moni!

It sounds like you have found some good docs - makes all the difference. In answer to some of questions:

I have only been dx'd for about 5 months. I do not have severe symptoms like many here do. I'm more like what you describe. Don't get the burning feeling too often - but I have felt it on occasion, esp. when I stand up too long. Moving around seems to help it -even though my legs feel wobbly.

What most folks here will tell you is every one is effected differently by MG and even the same person is effected differently on different days, etc. It becomes a real trick learning to recognize your 'limit' signals. Heat and stress make it worse. Mornings are usu. the best, and evenings the worst of the day. Rest helps a lot.

When my right arm 'goes', I use my left. When they both get 'funny', I time myself out for ten minutes or so! Sometimes it works and sometimes it doesn't.

Anyway, welcome to the group. You will find a great deal of 'first hand' info here. Just remember, we are each different - and while we (one exception = alice md) are not doctors, there is an enormous number of doctors that have treated the folks in this forum!!

Sue

Hello and welcome to the forum!

Here are my answers to your questions:

Yes, I get a burning feeling in my muscles all the time. It's pretty much in my arms and usually centered in my triceps. It feels like I've just worn my muscles out - like I'm trying to hold up a barbell instead of a magazine. Things like hanging pictures or putting up shelves are impossible. Although once I did put up shelves - it took me three days on and off and I was sobbing the whole time. I can be stubborn!! Also, transferring clothes from washer to dryer is difficult and leaves me wiped out, holding up even a paperback, and while driving I sometimes have to switch arms back and forth. Actually, as I'm typing this my arms are hurting! That's as far as it gets with me though, I always pass the neuro exam. I can use my arms, it's just that my muscles feel very weak and painful.

To answer your second question, yes, it's hard for me to tell how things will go until I get up out of bed and start moving around. Being an optimist I often wake up thinking that the day will be a good one. But then like youI'll start to have problems when I actually get up. I'll get weak, my face will fall down, I'll start getting out of breath, my heart works too fast and too hard and suddenly, 10 minutes after getting up I'm exhausted and need to lie down again. Ugh!! I'm sure it can be very frustrating for you, as it is for me.

Ally

Hi Moni
 

Welcome to the forum.

I can wake up feeling absolutely wonderful and then go downstairs stand in the kitchen and make a coffee have my legs shake so much I could fall down and then have to wait an hour for the mestinon to kick in.

After my hour or so on the sofa I can then attempt a shower and get dressed. Then I come back down stairs and have another rest.

My day is punctuated with activity then rest. Unfortunately I had the diagnosis of MG and then that was removed a year later.

I dont get the burning feeling in my muscles I get the shakes, so I feel like Ive been lifting 10 kilo weights for half an hour. Other days my arms feel like they are just pinned on at the shoulders, like one of those paper dolls. They feel like they are just hanging there and are no real use! Somedays I shake just lifting the TV remote or a cup.

This forum is a great place for support and friendship, its great to have you join us.

Love
Rach:hug:

Thank you
 

Thank you all for the warm welcome. I have been reading this site for a couple of months while I was waiting for help/doctors. There is more information/help here than any other place on the web that I have found. For that I thank all of you. I know we are all different with the effects of this disease but it is a relief/comfort to hear people going through similar symptoms (as weird as that sounds because I wouldn't wish this on anyone). It makes me feel not so alone. I do have a great support system with my family. I can be very stubborn and want to do everything myself. My husband is very helpful as are my sons. It's just hard for me to give up doing some things and I am learning my limits.

Moni, I wanted to say welcome to the forum. I'll be back later - I'm worn out right now. I have some things I need to say. Most importantly . . . what "drops" are you taking?! Some antibiotics can make MG worse and those eye drops they use at the eye doctor WILL make MG worse. Make sure you always check a drug and it's relative contraindication to a disease before you take it, even though you aren't diagnosed yet!

Annie

new member
 

Hi Moni,
Welcome to the group!!! I personally don't have the burning but like a couple of others mentioned I have alot of shakiness. Sometimes I feel like I should be physically trembling from head to toe but it isn't always visible.

I am pretty recently diagnosed myself and am still trying to come to terms with this disease too so I can't say if it gets easier. I can say it really hasn't for me yet. I do now have much better days than I have had for months and am hopeful that as I find the right combo of meds I will have many more good days than bad. I like you had signs of weakness in my arms for months before anything else. That started about 10 months ago then in June my right eye started drooping. That is what finally sent me to the Dr. Hopefully you'll get the results of your MUSK test soon and will have some definite answers. I can tell you the people in this group are incredible!!! You can always come here with questions, concerns or just to vent. I wish you the best and please keep us posted.:hug:
Kendra

I take sublingual immunotherapy (allergy drops for the past 18 mo.) I opted for these instead of shots. Less complication possibilitites. I saw my ENT last week and gave her all my test results along with all the notes that the neurologist provided. (I carry everything in a folder everywhere I go now) My ENT said she was going to do some more studying on MG. We did check on the drops and they don't seem to have any ill effects on mg. Found a couple of articles where ENT's where treating people with MG with the drops with no problems. I was happy about that because they really do help my allergies be less severe.

Moni, Good, I'm glad you checked that out with your doctor.

Mestinon only helps with symptoms and not the "cause" of the lack of acetycholine; meaning it does not suppress the immune system and the antibodies.

If you had a bad headache and a minor backache, Tylenol may help to get rid of the backache but not all of the headache. It's the same with Mestinon. It may make the more minor weakness better but not more severe weakness. Depending upon what muscles you are using, you can have anywhere from mild to more severe weakness. Crazy, right? And if you take too much of Mestinon, you can have overdose symptoms (increased weakness). That's why some doctors increase the frequency of Mestinon before the dose. Some go back and forth (increase frequency, then dose or vice versa). Everyone is different. And you may need more at certain times, like when you are out in the heat or when you are sick. Those are only two things that can make MG worse.

When muscles get weak they can feel like they are "burning." If you've ever run a long time or been an athlete, you've experienced that feeling. People with MG just get there quicker! ;) Muscles can also cramp and spasm. MG is all about weakness but there are secondary problems that come from weak muscles.

I like how you said your face is "messed up." After I run errands, my face feels like it's going to droop off. I hate it. Fatigable weakness is never normal. They should do a SFEMG (Single Fiber EMG) on you.

Are you on Advair, by any chance. Or Flovent? Since you have allergies, I thought it was worth asking. Steroids can make those blood tests negative, as well as the EMG's!

Any other meds you are on that might interfere with tests?

I hope you get answers soon. If it is MG, it may take awhile to adjust to. Your mind will always want your body to do what it used to! It's harder to adjust mentally than physically, at least for me it is.

Annie