Hello everyone, I am 45 female that had crisis which finally got me what we
think to be the correct diagnosis problem is my crisis happened in TX and I live in Ohio. I think I have actually had this for a couple of years but had
unfortunately like many of you been diagnosed with fibromyalgia and so when the doctors were stumped that was the scapegoat go to answer....I must say however that I have a good primary care doctor that has been great and had been trying to figure it out it was the neuro I went to here that pretty much put up a wall that we couldn't get through and he was part of a larger
practice but you couldn't change doctors without allot of ammo other than that you just knew something wasn't right. My stubbornness also was making me do more than my body could handle....I would like to know though if anyone else has loss of feeling in the hands and feet and farthest from the trunk like lower legs and lower arms. My crisis came when I pushed myself to do 2 trips to the company I work for in Dallas within a months time. The
2nd one I ended up in the er unable to move my arms and legs and was talking out of my head. Has anyone else experienced what I call a buzzing sensation in my lower legs that would not go away. When I went in to the first hospital they did not have a neurology department so I was taken by ambulance to Southwestern which is a teaching hospital for neurology and that is where I was told that I have the MG. I started responding to the mestonin they put me on right away but because I was so far from home they did not start the steroid treatment so I was to get that started once I came back home and got new neurologist. Here is where I have a ton of questions for you very kind people as the neuro I went to at Cleve Clinic had
to get all the test results from TX and had to redo one of the blood tests so I have not started on the steroids or something more than the mestonin as of yet. I do have the swallowing difficulty in that food doesnt go down too far and the liquids stay in my throat for a while before going all the way down but I am not having trouble with diarhea ....actually almost the opposite unless I take 2 or 3 of the mestonin within a short amount of time....have any of you had that happen? Like I said I am only guessing at the length of
time I have had it but I think it has been quite a while. Do the stomach muscles take a while to wake up....I am guessing it takes the more powerful meds to get things going as I have to take the mestonin every 2 hours in order to get around the house and that is with resting most of the day. Life definitely has changed but I am encourage by the information you have all shared. I am going to wrap this up as it has gotten too long and my head is swimming with all the questions I want to ask. If anyone could write back though that the body has given out without losing the breathing as I walk like a frankenstein figure and my limbs feel as if they weigh 50 pounds a piece.
Thank you in advance for any insight you may be able to give this crazy lady from Ohio. Bert....my real name....I have a Tennessee Walking horse that is one of my inspirations to get back to...heck just being able to brush her would be a blessing from where I am right now but I have to keep the goal...I too want to beat this or at least stay in the game LOL.

Hi Bert, and welcome, and OMG - this is so bizarre that you posted this today! I just saw a new neuro Thursday afternoon that mentioned this secondary condition causing the non MG symptoms you are describing and I have been experiencing for over 13 years now!

I am 52, was first dx'd in 1996 then that was changed to spinal cord compression, but then I was re dx'd MG in 2004.

I respond to Mestinon very well, but it will not help these extra sensations we have. It is a separate condition. My new neuro is looking at polyneuropathies, of which there are many types.

I DO have the numbness in feet and hands, buzzing in the legs (doesn't that feeling just drive you nuts?) My swallowing issues are just as you are describing.

Do you know if your bloodwork includes a screen for B12, Vitamin E, and Copper deficiencies. These can all cause polyneuropathies that can be relatively easy to treat and reverse. Please check with your doc on that ASAP, because the treatment for many other polyneuropathies is actually the prednisone (amoung other things).

Do you have balance issues? You mentioned how you walk, so I'm guessing you probably do.

How were your reflexes? I'm very hyper-reflexive right now, and spastic (comes and goes), and that isn't MG. In my case, and I'll bet yours too, there are two separate conditions, I definately have MG, but the numbness, tingling, cramping, tremors are the "other" - in my case a certain type of polyneuropathy.

I'm glad you found this forum so early after your diagnosis. It's been very helpful to me and I'm sure you'll feel that way too.

I can't wait to compare more notes with you! Get some rest and answer when you're able.

Hi, Bert. I'm glad you are finally getting answers - and treatment.

There's one interesting thing about what happens when MG gets really bad, like during a crisis. When you can't breathe well and can't circulate oxygen well, the nerves are affected too. It's a secondary thing and not a primary symptom of MG. Nerves need oxygen to "feel good" too. You can have neuropathy feelings if you are that bad off but it will usually go away afterwards.

I had a severe B12 deficiency years ago and the pattern of involvement of peripheral nerves is feet/ankles, hands and face. It couldn't hurt to ask your primary doctor to test for that, like Becky said.

It sounds to me like the Mestinon may not be enough medication for you. Mestinon helps get us more acetylcholine (ah-seat-ill-co-lean) but does not really help with the reason we have less of it. Some people are on immunosuppressants, some IVIG and some plasmapheresis.

I have days where I can't get around well at all. Others are okay. If I go out and run errands, I am worse the next day but crazy bad the 2nd day after. And, yeah, I guess I look a bit like Frankenstein too!

You have to be VERY careful with things like stress, infection, not enough sleep, etc. Heat is my #1 trigger for making me worse. It is for most people. So be very careful in the spring/summer months.

Since my crisis in 2005, I have taken the word "push" out of my vocabulary. I pushed too hard in the hot weather and the MG pushed back. It'll do that.

Talk to your neuro about all the options open for you. Get lots of information! You can go to www.myasthenia.org for more info too.

I think you and your neuro can come up with a plan that will keep allowing you to brush your dear horse!! Even though sometimes you get a bit worse doing the things you love, it's worth it to keep on doing some of those things. We need a good quality of life just like those without a disease.

I was annyoing with all the questions I asked right away years ago. You need to know as much as you can, so keep asking.

Annie

Hi Bert,

welcome

I know what you mean about just wanting to brush your horse.
I had to sell mine, nowhere to keep him, no money to adjist him, and as I couldn't ride I thought it would be kinder for him to go somewhere he would enjoy going out on bush rides.

I have just started volunteering a Riding for the Disabled. I love being around the horses, and seeing the peoples faces light up when they get on the horses.
It may be a while before you get back in the saddle, but its something for you to look forward to. And I rekon horses help us when we arn't well, even just being near them, smelling that horsy smell, and soaking up some of thier strength.
take care
Kate