[LISA MICHELE HALL]

I love to dance…I could do ballet at the ripe old age of 67 (not bad for 67 old lady)..Then “MG” hit me in 2021…I was never one for structure with an exercise program,  Now I make myself exercise because it helps me be stronger,  Unless I overdo it.  I dance the best I can.  there are things  I cannot do I am trying to make an exercise routine built for me.  It’s VERY difficult, my legs mainly  hurt  and are EXTREMELY weak.  Anybody out there have weakness in there legs?

Lisa

[LISA MICHELE HALL]

Theresa please add me to your seronegative group.

Thank You,
Lisa Hall

 

[LISA MICHELE HALL]

I am seronegative and am VERY interested in joining your seronegative group. Please keep me on the list.
I am currently on IVIG every week. I have been offered mestinon, but it makes me very nervous and does not seem to work very much. My legs are so weak I spend most of my day in bed…this can’t be good for me.
I am getting very depressed because I can’t do much activity anymore. Does anyone else have weakness in their legs to the point walking is painful and VERY difficult?

I would appreciate any feedback.
Sincerely,
Lisa Hall

[LISA MICHELE HALL]

I have seronegative MG and I am in constant pain in my upper legs and upper arms.  I do a exercise routine every morning and this starts my day.  I walk around my house making a few laps.  This helps me greatly.  I was used to riding my bike, hiking and swimming before MG 1 year anniversary this July.  I am not able to do any biking, hiking or swimming yet I am too weak in my legs.  I am grateful I can do my own marketing and shopping this is where I get most of my exercise walking around the store.  My goal is to be able to walk a mile.

[LISA MICHELE HALL]

Hello: I am responding to the Mestinon side effects. I feel more restless and I also start to sweat and get panicky. I do not like the feeling I am trying my best to tolerate it. I was started at 60mg 3x/day and had to drop down to 30mg 2 or 3 times a day. I am seronegative and unfortunately there is less treatment for my type. I also receive IVIG 4 times per month. I am not seeing a lot of improvement in my muscle weakness which is mostly my legs and arms and also causes me GREAT PAIN! My neurologist does not acknowledge the pain or panicky feelings; I am very frustrated with the lack of empathy. I am trying to stay positive…not easy. I am praying for something better. As far as the swallowing the only thing I have noticed is it takes me longer to swallow a large bolus of food, it sometimes feels stuck and I just take more time between bites. I also am under weight 5ft 5 and holding at 100#. I have no appetite. I have heard that neck exercises to strengthen the neck muscles help. I drink protein shakes to increase my weight. I have heard that Mestinon affects the gut. I hope the mestinon is helping you, if it is maybe you could ask your MD for something for anxiety? God Bless You and NEVER GIVE UP!

[LISA MICHELE HALL]

I experience pain all day! My doctor does not address this issue. It is directly associated with my leg and arm weakness. It is very frustrating to be ignored by the physician that I am in PAIN! Does anyone else have pain?

Lisa

[LISA MICHELE HALL]

Hello all  I am newly diagnosed and have not been told what type of MG I have.  my issue is extreme pain in both legs upper and lower and both arms upper.  The pain medicine does not help. I am very depressed because I am in so much pain and cannot do almost anything I used dance exercise etc.  Is there anybody out there  with pain?  I know the pain is from the weakness in my extremities and I am on IV/IG doesn’t seem to be helping.  Was on prednisone REALLY upset my GI system and added anxiety.  I hope someone can relate to my symptoms….VERY DEPRESSED

 

[LISA MICHELE HALL]

I was on steroids and was able to wean off slowly w/ neurologist.  I was put on IVIG for approx. 8 months…I did have some side effects but I was able to tolerate it better than steroids.  I am now trying Vyvgart for 4 weeks then will see doc in January.  Of course I was off IVIG for a month or more before I started the Vyvgart.  I am having faith this will help my extreme leg weakness and pain.  I hope this helps I know the above is not for everybody.  At this point my eyes are not so bad it’s my leg weakness and pain.  I know you need to check with your doctor.

Lisa

[LISA MICHELE HALL]

I have extreme pain in both of my upper legs and upper arms.  The doctor does not address the pain.  The pain started when I was diagnosed with myasthenia gravis. My main problem is weakness in both legs and upper arms along with constant pain.  Does anyone else have this type of pain?

Lisa