Maybe you should go see your doc. If your doc is as mine he (or she)
would want to know and see you. Sometimes the worse we get the harder it is to catch up and get better.

Hi Ann! I have an appointment in 10 days or so but it's just soooo long to wait. My mom keeps telling me that many of my symptoms are anxiety-related and I don't know what to think. I did read about other neurological diseases and made myself panic. I did have MG/fatigue symptoms since my teen years but for some reason I'm scared it might be something worse or that I might have a new disease now. Hopefully part of my symptoms exacerbation is due to the anxiety. I will definitely try and see a therapist as soon as I can too.

Yup, see your Neurologist. There are many different causes, for the problems you describe. Good luck, hang in there! - Ross

Hi! My symptoms started in the legs. I felled to the ground and couldnt get up on my own. After that the legs was weak, shaky and felt like a burning-sensation in the muscle around the hips and down. Later on I noticed symptoms in the arms and fingers, then in the neck. In my shoulders it also was a kind of burning sensation if I tried to push through my weakness. Now Im on Mestinon and it feels better but sometimes it still there. I have not a formally diagnosis of MG but the Mestinon helps me!

Yep... you betcha.

I have several issues with walking long distances. The major one is that after a long period of walking (like to go to Target or something) my left leg begins to be more sluggish than normal and it becomes difficult to pick that foot up. I now have a walker that I take with me when I suspect I may have to walk a long distance. I also get the burning in my hips, low back, thighs, shins and calves. I almost always have the burning in my neck and shoulders as I am very weak in those areas. When the leg starts to go limp I use my walker or my husband will push me around in the wheelchair. For the neck and shoulders I have a neck pillow that goes everywhere with me and a neck brace to give me support if I need the help.

I agree with the others here. Seeing your doctor is a must. If you have high anxiety try to do something that will take your mind off of what is worrying you. You may also want to discuss that aspect of your concern with the doctor and see if there is a mild medication that you can take which will have a calming effect. You can cause very real symptoms with anxiety and you certainly don't want to let that override your MG symptoms. At that point you won't know which is which. The worst thing that you can do is jump to conclusions or worry about the unknown because that only works against you. I know, that's easier said than done but if you are otherwise unable to redirect your thoughts adding a new medication may be your only option.

I hope that you feel better soon and know that many of us have had these issues so it's not abnormal at all if this is happening to you. When I do have the leg issue, I kind of look like a stroke victim in that I have to lift my leg up from the hip and thrust it forward a bit so it's really challenging to work with that. Keep your chin up and try not to get too far ahead of yourself. Hopefully you will be able to get an earlier appointment.

Good luck and big hugs.
Angie

How old are you.
If you are under 18 be sure your mom reads what I write. If you are an adult you may want her to read this too.
The medical people unfamiliar with dis eases such as our can have a tendency to say we have anxiety first. Th medical professionals who understand our disease tell me yes when our body gets distressed it causes anxiety.
Since you feel worse you need to get it checked out.
Since your apt is in 10 days you need to call the doctors office and tell them you are getting worse and describe symptoms and ask to get in earlier or get on cancellation list. If you start to have unbearable symptoms go to Er of hospital of your doc.

The burning sensation is a clue that might help you pin down what is happening. Normally that comes from the peripheral nerves having problems.

Added to the other symptoms that could point to Multiple Sclerosis. I don't recall ever reading that MG causes burning sensations (although possibly some of the meds used to treat it may).

I always do a google search on a list of my symptoms when I am trying to understand possible problems. Here you might try:
weakness, burning sensation, trouble walking

Self-Diagnosis in Action:
Doing a symptom search a few years ago, I self-diagnosed benign paroxysmal positional vertigo (dizzy only when you lay down due to ear crystal shifting problems).
I went to my doctor and was asked "what brings you here."
I replied, "I think I have BPPV."
"First time I ever had a patient tell me that. Let's see if you are right." After some movement tests and peering into my eyes and ears said "Yes, that is what you have. Did you read how to treat it?"
"My doctor might have me do some head movements or may just reassure me it will clear up on its own and then tell me to go home and wait for up to 6 months but call if it gets worse."
"I don't do the head adjustments to try and reset the ear otolith crystals, as it may make things worse rather than better. You just wait and your brain will adjust to shifted crystals and your vertigo will go away. Anything else?"
"Aren't you going to tell me to call if it gets worse?" I asked.
"Well, I thought maybe you would figure that out on your own." he replied with a grin.

Good Luck

I'm thinking the weird "burning-sensation" you are referring to is what I believe most myasthenics feel in their muscles(s) after any repetitive motion.

Like when a non-myasthenic is working out, and feels that burn, then rests a minute, then starts-up again. Unfortunately, our "burn" has quite a bit longer hang-time than normal people.


Take Care.

Would like to know what type of neck brace you use, Angie. Yes, "geeky" I also have the burning sensation mainly in my neck, shoulders and spine. I have trouble walking, but it is caused more by double vision which causes loss of balance and lack of depth perception than by muscle weakness. I have had MG for over 3 years and it has progressed, but thankfully the progression has been slow. I hope your doctor will have answers for you.

After putting up with dizziness and weak neck I got my neck brace. It helped dizziness. I think my head bobbing caused the dizziness.
Just a foam neck brace that you can get about anywhere that they sell heath supplies. Even order on computer under foam neck brace. Some can be too wide so I cut them and make them more narrow as needed. I keep one in each car.
When my neck was weak I always wore it when driving and I still do if tired.
A scarf around my neck helps too and it is a life saver in social situations.
It stimulates the muscles just enough to help.

Ann yes I have the same thing at times so when I go out I always have a cane with ne for just in case also have one in the house. now when my arms are week it is usually do to over use or I slept wrong I find that when I get a good massage it helps but they know what my neruo doctor wants and he is well aware of them so I feel safe but if it does not work I tell him and so far so good.
good luck and I agree call your doc!!!!
Chuck

Yes I get both. The burning is a warning that you do not have enough of the mestinon on borad and the muscles are being used too much past what they can do. You need to make sure you and your doctor have your mesitnon ordered in such a way you have some leeway for adding in prn. Increased mestinon helps. When doing activity I add in the mestinon while I am working. I sometimes split the pills so I add in 30 mg rather then the 60 mg.

The increased neck weakness meant another trip to the neurologist who is a specialist in MG. He increased my mestinon even more and it has helped.

Pacing helps too. I have a storm coming, a doosy and I might lose electricity. I just needed to get two wheelbarrows of wood up on the porch. I did this after taking mestinon and waiting for it to kick in. I also threw up the wood onto the porch rather then walking up the steps again and again. Avoiding such things can help you. Pacing yourself and medicating does too. I am now resting up and later I might actually stack the wood.

Living with muscle weakness takes practice and we are ever changing so we get flares and changes. Communicate with your doctor and remember mestinon is your friend. :) I add in imodium for the GI effects when I take so much.

Also...I cannot take prednisone. Many do here and some like my daughter take cellcept. If you have a genetic form of MG it is treated differently and due to our being snowflakes no two of us are the same. In my case prednisone in doses that might help MG would cause life threatening problems.

I also take 180 mg long acting at 7 am and 7pm. It helps a great deal in that I don't get depleted completely usually...if I keep up my 60 mg Q4 and add in more prn when needed.


Communication with a doctor who truly gets MG and our individual circumstances is vital to our being able to function with changes. Hopeful Hugs for you, Marie

when I'm doing poorly, I have a huge amount of trouble with my neck and with walking. For me, it's a sign that I'm in bad shape and need some intervention, like (for me) more prednisone.

GreenMarie, We burn wood too! Hauling wood is hard work isnt it!?

Geeky, The "standard" symptom lists say that MG starts in eyes/throat/neck and go down. That is the way it has worked for me. I started with throat, but now neck and arms are giving me trouble. Lately, I notice a weird gate, but no burning in legs yet. But yes, my MG presents itself as a burning and then gives out.

But many people don't fit that top to bottom as we are all snowflakes. Seems like you are just upside down. haha.

Just talk to your neuro asap. Don't overthink it. Would be a shame to put all that energy into fear until you know for sure. But if you get scared, go to the emergency room.