Go Back   NeuroTalk Support Groups > Health Conditions M - Z > Myasthenia Gravis

Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

Your diagnosis, treatment & other information

Reply
Thread Tools Display Modes
Unread 03-14-2012, 12:28 PM   #21
tinas dad
New Member
 
Join Date: Mar 2012
Posts: 2
Teeth

Quote:
Originally Posted by Jo*mar View Post
Feel free to use this thread to post your story of diagnosis, health history & treatments.
My father was diagnoses with myasthenia gravis in december 2011. He has been on prednisone and cellcept . He was recently hospitalized after having a nonproductive cough and they found he had a cardiac arrythmia (atrial fibrillation). He then received a 3 day treatment of IVIG. He seems stronger cough a little better unfortunately still in atrial fibrillation and has to go home on Coumadin.

Being the RN in the family everyone is looking to me for answers and suggestions. My father has been a vegan for 10 years. My question is about diet. Do nightshades harm or help symptoms? He could stand to loose some weight (he has lost since starting treament due to slowing down eating) even on prednisone. Thanks for any input!
tinas dad is offline   Reply With Quote
Unread 03-15-2012, 02:26 PM   #22
Bernie_77
New Member
 
Bernie_77's Avatar
 
Join Date: Mar 2012
Location: Albany, Ga
Posts: 1
Default

I was told in Feb that I have myasthenia gravis. I was not clear on this disease at first. to be honest i am still not clear about it. I know that it has effected me and is interfering with my job. i drive trucks for a living. So i have to look for the well being of myself and others. i have not giving up on getting better. i declare it. so i hope to encourage others and live a happy life no matter what.
Bernie_77 is offline   Reply With Quote
Unread 03-27-2012, 02:52 PM   #23
bu452000
Junior Member
 
Join Date: Mar 2012
Location: Brick, NJ
Posts: 35
Default mg

Quote:
Originally Posted by Beannie View Post
I live in a major city and am going to a great medical center - that being said, they seem to be overly distressed that I have symptoms that don't fit together in a perfect neuro disease box. In addition to the weakness/fatigue, I have occasional fasciculations in my arms and legs as well as random muscle movement that I can't control. I also have sensory loss in my hands and feet (both temperature and pain).

I've been on the mestinon for 2 days and it really seems to help. However, it only seems to last for about 5-6 hours and it kills my stomach (does that improve with time?). I tried taking a Bentyl this afternoon to deal with the crazy cramping and it totally spaced me out. Of course, that was when the neuro called to talk! She wants to order the SFEMG and a lumbar puncture. The SFEMG to be done first. What is a SFEMG? How do they do it? I've had 3 EMG's already and two with the exercise/rest electrocute my hand and neck parts. Both times I had some positive results but they decided it was due to movement and not a real decrement.

I was tested for MuSK, but not for LEMS. It's only been a week and apparently it can take up to 2 weeks for it to come back. I get the sense from the docs I've seen that they NEED a positive test to help them know what to think. On the other hand, I am grateful for every negative test I get
Try taking half the dose of Mestinon. It only lasts about four hours. When I first started on Mestinon it gave me terrible gas and diarrhea. Was sent to a gastro Dr and had a endoscopy none of which did any good. I finally figured out it was the amount of mestinon that was the problem. Currently I take half a 60mg about every four hours. When MG symptoms are more intense I can take a larger dose without stomach problems. That's what works for me.
bu452000 is offline   Reply With Quote
Unread 03-27-2012, 03:00 PM   #24
bu452000
Junior Member
 
Join Date: Mar 2012
Location: Brick, NJ
Posts: 35
Default

Beannie, When I first started on mestinon it gave me terrible gas and diarrhea. Was sent to a gastro Dr and even had an endoscopy but still had problems with the mestinon. I finally figured out it was the amount of mestinon that was the problem. Switched to half the dose, half a 60mg every four or so hours and the problem was solved. When the MG symptoms are more intense I am able to tolerate more mestinon. Worked for me. Best of luck to you.
AL
bu452000 is offline   Reply With Quote
Unread 03-28-2012, 06:28 AM   #25
Icrad1
Junior Member
 
Join Date: Mar 2012
Location: Chicago subburbs
Posts: 28
My Mood:
Default My diagnosis...any help/support is welcome

[/font]My name is Darci, I live in Chicago area...Just to give a short history...way back in 2001, right after my only child was born (I was 33) I was having issues with my arms...like I would be holding my new infant and it was like my arms wouldn't work (like they locked up or something) anyways, after seeing a rhuematologist and going through many many different tests, he diagnosed me with Fibromyalgia....so for the next 9 years I just kind of "blamed" Fibro for my "issues". I started to feel though, that things were not "right" and it just seemed like it was more than Fibro or something different. My arems and legs were giving me A LOT of problems...I had fallen a few times after getting up from sitting...I could not do normal things some times with my arms and legs...I am only 43, and felt like I should not be having issues like I was/am...some times buttons were tough for my hands, most times walking up one set of stairs, I would exhaust about halfway up...I kept thinking, "I know I am out of shape, but this is crazy...I don't weigh 600 lbs, (not even close to 200...I will leave it at that, I am a woman and I weigh between 100 and 199) why is this hard and why am I out of breath??? " I went to another Rhuematologist for another opinion who agreed with the first, Fibro. Well, that was fine for a very short time...I then decided to go to a Neurologist. Was referred to one after going to a walk in clinic, because I needed to do something fast....(WHO WAS A WITCH with a capital B) she was dismissive and didn't believe ANYTHING I was telling her...so I went to my General Doctor (he is a hematologist by practice, but is more a GP) He reffered me to another Neurologist and handed me the name Myasthenia Gravis and said "Once this doctor has run all his tests and thinks he is at the end...if he hasn't run the test to test for Myathenia Gravis, tell him that I want him to run this test." Well, after nerve conduction tests, EMG, CT and MRI of brain, other blood tests....I told the new Neurologist that my GP wanted him to test for MG...he was confused as to why...but did it anyway. I didn't think I had it either (no droopy eye, no facial issues (I thought)...so after all tests come back, the Neurologist (and myself) are in shock...as you know with the test that checks for the antibodies...a 0.5 or below is normal....well my level? or number was over 248 or something...giving me the diagnosis of Myasthenia Gravis. I have not started meds, yet...but will be in the coming weeks - He is talking Mestinon first...but also mentioned the Prednisone and also the surgery...I have a list of questions for him already...but I am a bit nervous and confused and all that....I am now finding some answers to a ton of things from my past...like why the allergist would not do the skin test on me, he kept saying I have not passed the breathing test...and I never understood why I couldn't...I didn't feel like I was REALLY having a BIG PROBLEM breathing...but now I think I know why!!! I just want to check out this site and read more and get as much info as I can....thank you for the opportunity to blab about my stuff....Not sure what is next. My name is Darci, feel free to contact me!!!
Icrad1 is offline   Reply With Quote
Unread 05-03-2012, 01:52 PM   #26
BackwardPawn
Member
 
Join Date: Apr 2011
Posts: 197
Default

Hi. My name's Jeff and I've had myasthenia gravis for about fifteen years, but it wasn't properly diagnosed until a couple years ago. My first symptoms were blurred vision, but it eventually spread to my back and hip muscles. Looking back, it should have been an obvious diagnosis based on the symptoms, but somehow it got missed by every neurologist I saw...and the neurologist who finally diagnosed it refused to believe it was generalized, despite the fact that I couldn't walk anymore.

Eventually I realized that he hadn't treated many of these cases and ended up switching to University of Maryland. Its been an uphill battle since then. I've been through three rounds of PLEX, one of Rituxan, and am being treated with Prednisone, cellcept, mestinon, and IVIG, but I've gone from barely functioning to relatively stable. I'm currently tapering the Prednisone so that I can have a thymectomy. I've been told I have to be at least at 30mg, and am currently at 37.5 (down from 60 a few months ago). I'm hopeful that it'll help in the long run, though.
BackwardPawn is offline   Reply With Quote
Unread 05-04-2012, 10:41 AM   #27
Royce
Junior Member
 
Join Date: Mar 2012
Location: Florida
Posts: 8
Default No DX yet

Hi, I am new here too. I have been having problems for over 2 1/2 years. My symptoms have seemed to spare my eyes but started with general fatigue which led to shortness of breath, difficulty swallowing and now to tingling to the bottom of my feet, palms of my hands, cramping and muscle twitching in various parts of my body everyday and seems to be progressive. I saw a neuro 2 years ago who did a head CT and said I was fine, dx me with chronic fatigue syndrome and told me to try swimming. I was seeing different Dr's over the last two years every time a new symptom started but none could find anything wrong. Then in October 2011 the muscle twitching and cramping started. When I started feeling a tingling to the bottom of both feet I made another appointment with a neuro at a teaching facility figuring they would be more thorough, which they were. They spent at least 20mins doing a full neuro exam. Scheduled me for an EMG which came back abnormal. They said they were thinking MG. Next was a SFEMG. That came back abnormal also. I am still waiting for results from AChR and MUSK bloodwork. They started me on Mestinon which does not seem to make any difference. I am concerned because I cannot find anything about MG causing muscle twitching or cramping but I have read that ALS does. I wish the Dr's could understand that the longer it takes for a Dx, the harder it is for the pt's to plan for the future.
Thanks for letting me vent, I feel better now.
Royce is offline   Reply With Quote
"Thanks for this!" says:
tamiloo (05-04-2012)
Unread 05-04-2012, 10:58 AM   #28
Royce
Junior Member
 
Join Date: Mar 2012
Location: Florida
Posts: 8
Default I understand

I understand what you are going through.
My (several specialists) Dr's have made me feel like I was loosing my mind. they need to realize that pt's know their bodies best and to listen to them. I was also told there was nothing wrong with me, advised I may be depressed, chronic fatigue syndrome and fibromyalgia were among some of the wrong Dx. Finally after 2 1/2 years I went to a Neuro again for the second time. But this time I went to a teaching hospital. They did a full neuro exam and said one of my thoughts, poss MG ( I have also been thinking MS or ALS). I went for a EMG and SFEMG both came back abnormal and still waiting for AChR and MUSK to come back. What an exhausting journey. And they say stay away from stress. they are the cause of it!! I hope your journey becomes easier and you can find a Dr who really cares and will listen to your concerns. Good luck to you.
Royce


Quote:
Originally Posted by Swallow123 View Post
There seem to be a great deal of autoimmune disorders on my mom's side of the family. 2 aunts (and possibly an uncle) have MG and my mom has Lupus. I ended up with Graves Disease and MG.

After an SFEMG test in 2001, the neurologist decided I had Occular MG and gave me Mestinon. My blood test turned up negative.

The neuro didn't say much, perhaps because she was behind and perhaps because she was ill herself. Anyways, I didn't think anything of it and got my future scripts from my GP. My family isn't that close - especially when it comes to discussing diseases.

A few years later, I thought it might be a good idea to visit the same neuro for a check up, because I was experiencing some weakness in my extremities. Neuro said everything was fine and to increase the Mestinon as needed.

For about 5 years in all, I didn't realize it, but I had been making allowances for things like the long walks I used to take with my husband and neighbour in the evenings and choosing hamburger over steak - because filet was too tough.

In 2006, I started to experience breathing problems and woke up in neuro ICU of the local teaching hospital. Dr's did a course of plasmapharesis and finally removed the breathing tubes and IV's about 5 days later. According to the Endocrinologist, my thyroid levels were dangerously low.

YEARS LATER, I would find out that the Magnesium I was taking for muscle spasms was binding to the synthroid and weakening its efficacy. That, and the MG saw an opportunity to play havoc with my body. To this day, my neuro still believes that I quit taking my synthroid(???).

Anyways, for about 2 yrs, I was in that "Maybe she does / Maybe she doesn't" category that many of us have had to endure. Most times, I was treated with IVIG, Solumedrol, etc. FINALLY, after a Tensilon test, I got re-diagnosed!

Since I don't present in a text book manner, I was given a T/F psychological test that showed I also have CONVERSION DISORDER. Apparently, if you admit that you were sexually abused as a child - your "inner child" can manifest physical disorders to cover up for mental illness.

I was even told I had "drug seeking tendencies" and that I go for the "big guns" instead of a tylenol.

This was brought up, when I went to the ER for burning pain and swelling in my hands and fingers. Try to get ahold of any medical person on a Friday afternoon! None of the drugs I had at home were doing the trick - hence the "big guns" (Percocet). Later, I found out that I have osteoarthritis in my wrists and, were it not for my rheumatologist sending me for a bone scan, I'd be even sicker (mentally) than they first thought!

In the meantime, for MG I'm taking Mestinon 60mg x 3, Mestinon 180SR at night, 200mg Imuran & Prednisone (15mg alternating to 5mg every other day). I take a whole host of other drugs, as well.

As long as I take things easy and rest before a planned day out, I'm okay. The stress part can be tough to handle, but I seem to manage okay. It's only when I overdo it that I get into trouble.

My neuro now says that if I have trouble swallowing, I should go her hosp right away. Yeah - Like that'll EVER happen!

Sorry for the long winded story
Swallow123
Royce is offline   Reply With Quote
Unread 05-04-2012, 01:06 PM   #29
BackwardPawn
Member
 
Join Date: Apr 2011
Posts: 197
Default

Quote:
Originally Posted by Royce View Post
I understand what you are going through.
My (several specialists) Dr's have made me feel like I was loosing my mind. they need to realize that pt's know their bodies best and to listen to them. I was also told there was nothing wrong with me, advised I may be depressed, chronic fatigue syndrome and fibromyalgia were among some of the wrong Dx. Finally after 2 1/2 years I went to a Neuro again for the second time. But this time I went to a teaching hospital. They did a full neuro exam and said one of my thoughts, poss MG ( I have also been thinking MS or ALS). I went for a EMG and SFEMG both came back abnormal and still waiting for AChR and MUSK to come back. What an exhausting journey. And they say stay away from stress. they are the cause of it!! I hope your journey becomes easier and you can find a Dr who really cares and will listen to your concerns. Good luck to you.
Royce
I know how that feels. For a long time I was told nothing was wrong with me. I was even sent to see a psychiatrist. Then finally I was given a diagnosis, only it was the wrong one. I was taking all sorts of nasty, cancer causing meds and they weren't doing much. The sad part was that I was seeing a neurologist regularly and had seen a neuro-opthamologist and neither mentioned myasthenia.

Eventually I just stopped going to the doctor. Fast forward about two years and I got to the point that I couldn't walk, so I see a new neurologist, he looks at my eyes and says, "I know what you have." Then he sends me to have hip surgery (as I hadn't connected the walking issues with MG, yet, knowing nothing about it, yet I have impinged hips). So I stop breathing on the table and when the neurologist hears about it, he's like, "You definately have MG, but I need to do some tests to confirm it." I was like, "Thanks, but did I have to almost die to get a dx."

But then he refused to treat it until I had a thymectomy. I wasn't about to have my chest cut open right after I stopped breathing in surgery. I switched neurologists again and my new neurologist has been overly cautious about surgery, though, and has insisted I put off the thymectomy twice now, as she didn't think I was stable enough. I'd really just like to get it over with, though.
BackwardPawn is offline   Reply With Quote
Unread 05-08-2012, 08:30 PM   #30
limpy
Member
 
limpy's Avatar
 
Join Date: May 2012
Posts: 169
Default My story so far.....

I am currently working on a diagnosis for symptoms that have been going on for some time, but I have blamed them on other conditions or getting older.
I have had disturbances with muscles and nerves for about 12 or more years and problems with muscle fatigue. For the past three or so years I have had the problem that while I was in the middle of talking, I just gave out of breath, and if I continued to talk, I would be hoarse and my throat muscles would ache. I have also had a droopy eyelid that was more problematic when I was very tired. I have had a complete thyroidectomy due to a multinodular goiter. I have had ups and downs with my thyroid condition and blamed a lot of my weakness and the eye droop on that. I have had multiple cases of bronchitis over the years that always make me very weak and ill. Not until I started having the episodes of seemingly being too tired to breathe did I start putting things together and wondering if I had something like MG. And these episodes would come on for no reason. Did not have to be doing anything. In fact, standing in a stationary position, such as waiting in line at the store seemed to be more difficult than walking along. The only thing I can figure is that different muscles are taking their turn while you are walking, but you are using the same muscles continually to stand. Just my take on things.
I finally ended up going to the ER one evening with the breathing thing in late March of this year. I had never had it so severe that it scared me like this. What really scared me this time is that I was also having extreme heart palpitations, so much so that I was too weak and shaky to walk. I was seen by an electrocardiologist in the hospital and he confirmed that I had an arrhythmia. I don't know if this is something coincidental or is related to my other symptoms.
I was also seen by a pulmonologist, and tested and I do have some lung damage, but not severe enough to cause inability to breathe. I have more difficulty breathing out than breathing in. She referred me to a neuromuscular doctor who with physical exam alone suggested that I had MG. He did the EMG and the single nerve fiber test and told me I had nerve damage that was more of a weakness of the muscles. He ordered bloodwork, which has not come back yet. So in the meantime, I am trying to learn all I can about this disease. Any help or pointer would be greatly appreciated. Sounds like I lucked up on finding a good neurologist right off the bat.
limpy is offline   Reply With Quote
"Thanks for this!" says:
Bipedal Primate (04-10-2014)
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Causes, Symptoms, Treatment, Diagnosis (Topix) NewsBot Health News Headlines 0 06-23-2010 06:30 PM
TOS - diagnosis, care & treatment tshadow Thoracic Outlet Syndrome 0 05-26-2010 04:35 PM
After FDA Warning, Depression Diagnosis, Treatment Decline NewsBot Health News Headlines 0 06-01-2009 04:10 PM
PatientsLikeMe Unleashes Real-World Treatment and Symptom Information to the Public f BobbyB ALS News & Research 0 08-20-2007 04:54 PM
Diagnosis and treatment of schizophrenia in primary care dyslimbic Schizophrenia 1 10-06-2006 10:48 PM


All times are GMT -5. The time now is 05:05 PM.
Brought to you by the fine folks who publish mental health and psychology information at Psych Central Mental Health Forums

The material on this site is for informational purposes only, and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider. Always consult your doctor before trying anything you read here.


Powered by vBulletin • Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.


All posts copyright their original authors Community Guidelines Terms of Use Privacy Policy
NeuroTalk Archives