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...
Long, I am sorry. I am terribly tired and very frustrated. First time I am posting here and sorry to sound off. I was recently told that I probably/possibly had MG by a neuro and the nurse practitioner that works with him. Dx was a bit sketchy as only double vision and one slighly droopy eye and a very slightly elevated cholinesterase. A few weeks later I started choking on liquids. Not all the time but about once a day. Emailed the nurse practitioner and an appointment was set up the very next day. I showed up for appointment 1/2 hour early only to find out appointment was at 11:00 am and not at 1 pm (not sure how I screwed that up.) So they scheduled another appointment for a few weeks out. I profusely apologized. Finally at that appointment I saw the nurse practitioner. Her comment to me was "well we can do a swallow study, but I am sure it will be negative." I had also had an episode in which I woke up unable to move my left arm. I had shared that with her and that I had been panic stricken and thought I had a stroke until I remembered the MG. She all but rolled her eyes and told me I had probably slept on it funny. When I asked if I should quit reporting new symptoms, she said in a sarcastic tone, " I am sure you will anyway." I have been progressively feeling yuckier, some days not feeling like doing anything. My walks are usually exhausting. The swallow study finally came and low and behold the speech therapist says, "I understand why you are choking" You are not handling liquids well. Your esophagus is not closing in time. With looking at myasthenia, you will need to regroup with your doctor. The NP had told me to call for results in a few days after the study, though she was sure it would not show anything. I endured a weekend of chest discomfort, fatigue, and throat discomfort anticipating a discussion with the doctor or NP today. I actually had to leave one event because I just couldn't tolerate the heat. I was a bit fearful that things might get worse, but then I do not know what worse to expect. Finally today arrived and I called for results and was told that the NP would get back to me. I waited all day to receive a message from the office staff that I was to have a thorough work up with a speech therapist. Excuse me? Am I confused? If I have MG has not it progressed a bit. Shouldn't someone share something with me about what to worry about? At least the speech therapist last week had told me to take small bites and sips and that she was going to recommend something to thicken liquids, but that therapy exercises would probably not be recommended as it may just make matters worse. I've informed the staff that I wished to speak to the doctor or NP as my symptoms were worse, but was told the doctor was out of town and NP is on call at hospital, so I may not hear from her. I don't know how you guys deal with this all the time! I have several autoimmune diseases, but this seems to be whacking me bad and the unknown/care sucks.
This is a place to ask a lot of questions and share experiences and get information. We promise to be nice when we post, it's under the reply box, but sometimes we let our frustrations out too. I guess we try to keep them to our personal messages and journals so this doesn't become a rant, but no need to feel bad for feeling the way you feel.
Welcome to the group,
b.
I hope you can get some peace soon,
TJ
Glad you found the site and I'm sorry you might be adding MG to your list. It seems that getting a speedy and correct diagnosis along with finding an experienced neuro is difficult for many with MG. I'm sorry you had such bad experiences with your neuro and his staff. This is the place to vent. Have you had MG specific blood work? Is there a university teaching hospital near you that has neuromuscular clinic? You can contact the MGFA to find a specialist in your area. They have good information on their site that you can print off to take to your GP and to the ER if need be. Could you possibly ask your GP to start the AChR antibody testing until you can get into a clinic?
If your swallowing gets worse, or you begin to have breathing problems, please go to the ER and let them know you suspect MG.
Keep us posted,
~sherry from texas
PS....sure is an adorable baby on your profile!
I am so glad you posted your experience though it is difficult to read anytime we have members who go through this. Unfortunately it happens all too often. I'm glad to hear you are going back to your primary and starting over. Be sure to get your blood and study results from your neuro especially since you had a slightly positive blood test and your swallow test wasn't normal. I really don't understand docs who react this way when faced with positive results, many of us get this when the results are negative.....but positive? Really puzzling.
I'll second what everyone said above. Definitely contact the MGFA and see if there is a good MG specialist near you. Sometimes you have to look around for a while but there is a good doc out there for you. I'm wondering, is it just the nurse practicioner who is reacting this way or does your neuro do it too? Another possibility is seeing a neuro ophthalmologist, sometimes they are the best option.
Cathi
Wishing you strength,
Gail
as you will probabaly find out, we all have similar storys of how difficult proper diagnoses are to get . Hang in there - Hang on !
if you dont ever give up - you havent lost the fight
this was an e-mail i sent about 9 yrs ago
after this summer i felt "strange" very tired i started going to bed by 12 midnight (im always up til 5 am -then work at 8am - i would sleep weekends.)
i could not run fast either i thought well im turning 40 next year. i would wake up tired go to work drink lots of coffee
and still be tired i started getting what i thought were major headaches and i dont ever get headaches i thought it might be the coffee so i stopped drinking it alltogether then the headaches got worse i was thinking it was caffeine withdrawl
during the summer my eyes got very sensitive to bright light even indoors my eyes would tear during the holidays i was burning the candle at both ends so when i was thinking i had the flu i took it easy by now my face was getting a little swollen
i thought it was that old familiar root canal going bad infection again so i ignored it.
i couldnt chew gum for 10 seconds, had problems swallowing and would fall down for no apparent reason, but then i would be ok these symptoms started out 6 months apart and grew to numerous issues daily over the period of about 4 yrs (right before
i was to turn 40)
a co worker said one day i now sound and talk differently i was working when a song came on i went to whistle and could not i did not understand it i looked in the mirror and noticed a line in my face beneath my beard and my left eye was droopy i got scared and thought i had a mini stroke i asked H R to find me a doctor on our plan close bye i went to a hosp in brunswick where the doc practices. within 15 minutes she tested me with exercises and said its going to be ok you definitely did not have a stroke you have something called bells palsy
she asked me if i were slurring my speach i told her im a mumbler and lately i have to repeat mysely more often she said there is no medicine for it it will get better on its own she explained the cranial nerve thing and what would possibly happen next (my symptoms at her office were not horrific yet i could still talk and move half my face ok) the left side was paralyzed already she said dont be alarmed if suddenly you cant eat talk and are tired you must REST
i went home and rested i woke up the following day and could not talk or eat i could swallow but both sides of my face were now paralyzed and i was very weak i could not lift my arms above my head or pour a glass of water so i rested all weekend
i found a fabulous bells palsy web site and studied i had all the classic symtoms except i noticed no one ever talks about weakness i thought tired meant weakness
now a weekend goes bye i was still too weak to get my MRI and bloodwork that wasnt scheduled till later that week anyway i posted some comments on the bells palsy website and said i understand my hearing ear pain neck back pain double vision not talking or being able to swallow are normal but has anyone not been able to wash their hair in the shower i took a nap when i woke up i logged on to the palsy site there were numerous feedbacks
"dave everything is normal but the weakness -call your doctor NOW"
there were 6 or seven all agreeing i had my girlfriend call the doc and see if that was normal i could not talk so i asked her to do it the doctor called me immediately and said go to emergency room right now make them give you a catscan doc said when i saw you you did not have these symptoms go to emergency room now i called my friends wife who works in the emergency room as a nurse she said she would take me in because there was a five hour wait and they are all a -holes in the day shift she knows doctors who run the triage and they would bring me in the back door and bypass the waiting so as i waited for them to get me i went back to the site only this time i searched for misdiagnosis not standard typical stuff i noticed a pattern all these diseases start the same only they add more symtoms as they move along thus making it difficult to pinpoint it until all the facts/symptoms are in i thought i had bilateral bells palsy where both sides are paralyzed then it goes on to something called ramsey hunt syndrome then gillian berre or lambert eaton... by now my imagination is running wild but i found a posting from a lady in the netherlands who went through all kinds of
testing with the same symtoms progressing like mine she had been diagnosed with
myasthenia gravis some rare disease i read up on it anyway
bye now my friends came to get me we went to the emergency room and all the
doctors came in because i was a friend of lindas. they said just bye looking at me i did not have bells palsy i said maybe its bilateral bells palsy they said no because of this and that i said how about ramsey hunt syndrome they again said no due to this and that how about gillian berre "nope" then i said something that made the room quiet i said generalized myasthenia gravis some young doctors got mad and said stay off the internet, rhe older doctors said that is so rare we dont even see 1 case a year hear dont worry
i then went to cat scan and blood work 2 hrs later the doctors returned and said
we do not no for sure but you do in fact have some inconclusive results pointing toward myasthenia they wanted to know how i learned of it i told them from the internet they wanted to make sure i did not have any relatives with it.
the doctor showed me a pill to take he said this is mestinon the only thing it works on is myasthenia and it works quickly so if after i take it i get some relief fast then i probably have it if i take it and nothing happens then i probably dont have it
i took the pill and noticed subtle relief the doctor returned and asked what i thought...
i said im not sure i thiought something happened for ten minutes he said i gave you a big dose it should of lasted longer like hours so he said im going to increase your dose and frequency to be safe if i dont have it it cant hurt .
im a tough bastard ill beat it i dont have any time to feel sorry for myself or get pissed off (yet)
i got a second opinion and they all say have it done in university of pennsylvania (which is where my doctor is from) or columbia university
i am finally eating very slowly- one piece of cereal at a time after iquids for 3 weeks its not pretty
but im doing it if you were to see me on the street you would think i had a stroke
but them poor bastards are not going to get better i am i owe it to them to keep on trying ill be ok
until the bills start coming in ha ha