Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I started to have leg and arm weakness about a year ago. I was originally told I had carpal tunnel (without any carpal tunnel symptoms). I then was worked up for MS. I then began to have shortness of breath and eyelid droop, difficulty talking and swallowing. I finally got into a neurologist who said I was very weak and it sounded like MG. He did an EMG which he said was normal, I had had a triple espresso latte right before because nobody told me about caffeine, and he started me on mestinon 60mg three times a day and said come back in 6 months and let him know if it helped. A month later I was admitted to the Neuro ICU because I was falling and respiratory distress. My pulmonary function was borderline to be intubated but they observed me, increased my mestinon to every 4 hrs and sent me home after 4 days. My antibodies were negative. I still could barely walk when I went back to the neurologist the following week. He then said "I don't understand why you are weak you need to go see a specialist". After fighting with my insurance company, I got into Shands in mid November. But now I am tripping and shuffling to walk, I cannot lift my arms over my head, I have blurry vision and ptosis, my neck hurts to hold my head up, it is difficult to chew and if I talk for any length of time, I start to sound nasally.
My primary doctor has been wonderful but is frustrated. Is this normal to have this much trouble getting treatment??? My Neuro and my Neuro opthamologist suggested that immunosuppressants would help but they dont want to make the call to start them, they said go to a neuromuscular specialist.
My primary doctor has been wonderful but is frustrated. Is this normal to have this much trouble getting treatment??? My Neuro and my Neuro opthamologist suggested that immunosuppressants would help but they dont want to make the call to start them, they said go to a neuromuscular specialist.
At least you are getting some treatment. I hope all goes well at Shands. Keep in touch, please, we need to know where people, especially those who are seronegative, are getting GOOD evaluation and treatment and it is also helpful to know which places to avoid.
good luck, b.
One huge collective shoulder to lean on.
Good luck to you and I hope everyone gets the treatment you deserve. We all deserve peace in our lives...may you find it.
Thank you for being here among us.
TJ from California
It is probable that seronegative MG folks have some other type of antibody that is not being tested for. Over the years,since the first antibody identification tests were created in the 1970s, additional tests have found more types of MG including the MuSK (about 10 years ago) and in 2008 another type of antibody -- low-affinity IgG autoantibodies to AChRs in another group of seronegative MG patients.
http://brain.oxfordjournals.org/content/131/7/1684.full
If you think of seronegative MG as failure of the medical field to have a test that detects some types of MG, it is easier to understand. However, doctors too often look at it as ruling out MG, or a reason not to do a full/normal treatment they would do if one is seropostive.
Most of us who have MG respond to mestinon (pyridostigmine) if we take it at high enough levels. That is a helpful way of diagnosing MG as almost no other condition is helped by mestinon.
However, if MG is advanced, it does take a lot more mestinon then doctors like to prescribe to a newcomer whom they are not sure has MG. I was seropositive, yet had to be in the hospital for a few days with breathing problems before I got moved up to enough mestinon to function. Initially mestinon had a lot of side effects that made it seem bad too, but I adjusted to the higher doses by following the advice of people here about eating with the pills and taking smaller doses at shorter intervals.
Giving you a prescription for mestinon at a low dose and telling you to come back in 6 months for an evaluation is ridiculous on the part of any doctor. If mestinon is going to work, it will work almost immediately if the dose is high enough--a few hours and you will know. A followup a few days later would have made sense.
A person has to be persistent, knowledgeable and pushy and willing to do a little trial and error on their own, especially with mestinon dosage. While I was in the hospital, the doctors there took advantage of trying double what I was prescribed, and for the first time in a month my double vision went away, I could briskly walk down the hall, and so we knew that not only I could tolerate it, but needed that much to breathe decently.
Good Luck. Taking control of your own disease by learning as much as possible, pushing to find a decent doctor and doing careful tracking of your own progress as well as being willing to do a little experimentation with med dosages is probably necessary for those of us with MG--especially when the disease is so rare that most doctors don't know what to do.
let us know how you are.
Annette
Ask for all of your tests again. Find another neuro. I know it is frustrating but the only way most of us got diagnosed was by going to doctor after doctor. When I got diagnosed I was at my breaking point. Those doctors had me convinced I was crazy. Convinced that all that wasn't happening and it was just in my head.
Self advocating and being well versed in MG is extremely important for someone trying to get diagnosis, especially if they are seronegative.
Try to find out if the neurologist at Shands has a special interest in MG and has experience with numerous MG clients. Shands is a great hospital but your diagnosis will really depend upon a experienced doctor with MG.
A couple of suggestions you may wish to consider.
Keep a journal of your MG symptoms
Have someone take pictures or video of you when you are having noticeable symptoms
Murphys Law: When your doctor does his exam you will not have any significant MG symptoms. Therefore it is beneficial to have the above information to share with your doctor.
The following link is to MG News and Links. It has some great information that you may find helpful. Be sure to check out the information pertaining to seronegative MG.
http://www.dailystrength.org/groups/myasthenia-gravis-links-and-news
There is a MG Support Group in the Orlando area. They have a meeting this month. You can find information at the below link.
http://www.myasthenia.org/LivingwithMG/MGFAChapters/Florida/SupportGroups.aspx
Wishing you the best.
Bruce