Go Back   NeuroTalk Support Groups > >

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

Your diagnosis, treatment & other information

Reply
 
Thread Tools Display Modes
Old 01-23-2014, 10:00 AM   #61
sham0968
Junior Member
 
sham0968's Avatar
 
Join Date: Jan 2014
Posts: 95
Default

Quote:
Originally Posted by radarmomma View Post
I am having a lot of trouble with balance, muscle sensation, brain fog, memory, exhaustion. I dont know what to do anymore
I am having all of these symptoms and negative blood work for mg but neuro sending me to another neuro, he wants muscle biopsy.
sham0968 is offline   Reply With Quote
Old 01-26-2014, 11:42 AM   #62
motorcycle diva
Junior Member
 
Join Date: Jan 2011
Posts: 21
My Mood: Your diagnosis, treatment & other information
Default

Would Chia seeds be a good part of this if they were sprouted. I use Chia seeds as a good source for Omega3 Fatty Acids; the sprout recipe sounds wonderful.
motorcycle diva is offline   Reply With Quote
"Thanks for this!" says:
Bipedal Primate (02-15-2014)
Old 07-03-2014, 11:45 PM   #63
Jeffcaptaink
New Member
 
Join Date: Jul 2014
Posts: 2
Default Omg...

My wife made me do it.... she placed this forum on my favorites page and told me I should read... I have had double vision for 19 months. Saw opto, opto neuro and then neurologist. I examined and found nothing wrong. In discussion before leaving his office, he gave scrip for Mestinon. IT WORKED. Life was getting better... until some weaknesses began last year. Went back to neuro. He did tests, tests, tests. All came back normal. Passed me off to an associate who gave me a half-assed examination and said it was all psychosomatic. Nice... I figured myself to be a nutcase and decided to endure.
My endurance has failed me more and more. Weakness in arms, legs. Swallowing issues increasing. Got Mestinon and it works, for awhile. Have to drive home at end of day with one eye closed.
As I read, I feel like I am not only one in this situation. Still, not really wanting to go back to a Dr. and have him tell me I am imagining all of this. Unfortunately, it is a drag. My loving wife is supportive but I hate having to lean...
Thanks for listening. Glad I am not alone, even if nothing else comes of it.
Jeffcaptaink is offline   Reply With Quote
"Thanks for this!" says:
southblues (09-03-2014)
Old 09-01-2014, 07:06 PM   #64
Hfleming
Newly Joined
 
Join Date: Sep 2014
Posts: 1
Default Newly diagnosed with MG

Hi all, i have just been diagnosed with MG and here is my story.

Around 2 years ago I started seeing badly, and I thought it was just my age, 50, and thought I just needed new glasses. Before I could visit the optician I got sent to Asia on assignment for the whole of last year. I thought the heat was going to kill me, and I was not at peak performance.

Fastforward to this year.

My vision was getting really bad, so bad that I felt unsafe driving, esp. At night as the oncoming cars all had 4 headlights. Decided that now i have to go to the optician for new glasses. He referred me to an eye-specialist. Eye specialist took one look at me, and referred me back to my GP and said she must send me to a neurologist and for CT and MRI scans as I have ptosis and he suspected a tumor pressing on my facial nerve.
It was at that time that I discovered a lump in my neck, and I thought i must've picked up some infection or something in Asia.

Well, got sent for the scans and immediately referred to a ENT. They did a biopsy and said it was a Scwannoma on my vagus nerve, that also presses on the facial nerve and the nerve responsible for swallowing, but that they would wait and see how the tumor grows, as removal would be very risky. Ok, I thought, will just have to get used to this, as there is nothing that can be done right now.

A couple of weeks later I discovered I cannot open my right eye on its own anymore, but I could open it if I open both eyes simultaneously. About a month later, the same happened to my left eye, and a week later, if i close my eyes, it became impossible to open them again without using my fingers. I also stopped breathing when I tried opening my eyes. To breathe again, I must shut everything out of my mind, force myself to relax all my muscles, and then I can breathe again. Back to the ENT departement at the hospital. More tests and then I heard that it has nothing to do with the tumor. Got referred to the neuro and had to wait for more than a month to see her.
In that time I learnt a couple of techniques to open my eyes, without physically opening my eyes with my fingers, like lifting my left arm up, and then suddenly flicking my left index finger, or sticking a clothespin besides my eye. That hurt like hell, but as long as pressure is applied on certain spots around my eyes, I could open them.

Finally I got to see the neuro. She specializes in MG diagnoses and does a lot of research. (The hospital is a university hospital). Whilst waiting for the blood tests to come back, she placed me on Mestinon. 60mg every 5 hours. Finally, after 6 months I dont have to go through ridiculous means of opening my eyes, I can lift my right arm above chest height and still breathe.

I see that the mestinon stops working after 4 hours, so I have to take it then, and I am now on 70mg, as on 60mg my eyes would still fall closed if I lift my right arm.

More appointments and tests with neurologists in the pipeline as soons as the bloodtests come back, but at least I am starting to feel like a functional person again.

Just my bad luck that I got both conditons at the same time, both affects my eyes, swallowing, voice, etc (well, the tumour only affects half of my face, half of my vocal cords, etc).
Hfleming is offline   Reply With Quote
Old 09-10-2014, 01:55 PM   #65
EnglishSue
Junior Member
 
Join Date: Sep 2014
Posts: 6
Default

Had problems since 2008. Been to so many ologists it's not funny. Diagnosed with Lupus Lyme Disease MS SLE Wegeners Lou Gerigs Vasculitis Psoriatic Arthritis Inflammatory polyarteris giant cell arteritis fibromyalgia chronic inflammatory disease ankylosing spondylitis and kidney cancer. So I should be dead by now, right? Not so fast! LOL. That's what happens when the docs don't know what's wrong with me, they throw a diagnosis out and never follow up with me
One even told me "If it was anything serious you'd be dead by now!". Hard to keep smiling when you hear that, but still. Only ones so far the majority have agreed with is fibromyalgia. Still possibility of lupus. However about a month ago had to go to ER because I was so weak I couldn't stand or walk. Breathing was extremely difficult and speaking next to impossible. Pulse was 106..probably from breathing problem. Pain in chest and shoulderblade.Did chest X ray. Sent me home after 6 hours..no diagnosis. Three days later, same thing. In meantime energy level had been at all time low and breathlessness continued along with weakness. Second ER visit same symptoms. Did another chest X ray cat scan of brain. No diagnosis. Sent home after 6 hours again. Seen ENT doc and speech pathologist since then
Both saw me in 'crisis' mode but other than slight bowing and slight thinning of vocal cords, no diagnosis. Referred me to rheumy and voice doc. Not seen them yet. GP did blood test for myasthenia gravis, just came back negative. Still wants me to see neuro doc..got appointment for two days from now. .impressed! Every day more or less the same...energy/weakness varies, breathing/voice problems come and go. Mostly resting helps. Walking any distance wears me out and affects my breathing..get dizzy or struggling to breath. Legs are wobbly, used to be just right side but now left too. Use cane because I tend to stumble. Need wheelchair when we go out-rarely. Live in the South so humidity makes breathing and walking more difficult. Had wheezing episode the other night which progressed to coughing then vomiting/choking. Life kinda sucks. Need my wage but I'm on short term disability so having financial problems too. Some days it's hard to keep going. Well, that's me.
EnglishSue is offline   Reply With Quote
Old 09-10-2014, 03:50 PM   #66
Kitt
Grand Magnate
 
Join Date: Aug 2006
Posts: 3,989
Default

Welcome EnglishSue.
Kitt is offline   Reply With Quote
Old 09-10-2014, 03:52 PM   #67
Kitt
Grand Magnate
 
Join Date: Aug 2006
Posts: 3,989
Default

Welcome Hfleming.
Kitt is offline   Reply With Quote
Old 09-11-2014, 11:10 AM   #68
EnglishSue
Junior Member
 
Join Date: Sep 2014
Posts: 6
Default

Quote:
Originally Posted by Icrad1 View Post
[/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!!!
Hi Darcie. Just fyi I am truly empathetic regarding your symptoms and the reaction you get from some 'specialists'. I was told by one neurologist that my problem was my posture!
EnglishSue is offline   Reply With Quote
Old 10-09-2014, 12:34 AM   #69
Jeffcaptaink
New Member
 
Join Date: Jul 2014
Posts: 2
Default Dr. is still "practicing".

Interesting to note that Mestinon works for my double vision, at the beginning of the day. As the day progresses and as time progresses, things get progressively "worse". Dr. says he doesn't know why Mestinon works for the double vision because this is all "psycho-sematic". Of course, he can't explain anything (double vision, left side weakness, swallowing difficulty getting worse, ...), therefore, nothing is wrong.
It is nice to have a place to vent and see that we are not alone, even though these docs seem to need a good waking up....
Wife pushing for me to go to another Dr. Last visit convinced me that it is not worth the effort. Not sure what the answer is or may eventually be, but symptomology used to be an indicator of the problem. All of these symptoms just lead to "imaginary"? Odd. Thankfully, my wife KNOWS because she SEES all of this daily.
Jeffcaptaink is offline   Reply With Quote
Old 10-16-2014, 02:16 PM   #70
Edalone
Newly Joined
 
Join Date: Oct 2014
Location: Tomball TX
Posts: 1
Default Negative Test Results

Ok I'm new to this so I apologize upfront for any miscues. My symptoms started 8 months ago mainly being out of breath and as the summer approached my symptoms worsened to include general muscle weakness and fatigue upon exertion. My arms and legs feel like they have lead in them, difficulty swallowing, shortness of breath, blurred vision. I went to primary care and had complete blood workup all negative. I was sent to a cardiologist for a complete work up including heart cath all negative. Then on to a Nuero his intial comment was MG he did one blood test and an EMG on my right extremities both negative he then changed his diagnosis to Malaise wasn't aware that was a diagnosis. Then 2nd Nuero his initial diagnosis was MG as well. He has done MRI, complete EMG, sleep study, and more blood work that he said should have been done to date all negative, except for sleep study I don't have those results yet. He started me on trial dose of Mestinon 60mg 3x daily seems to help some. My follow up with him is tomorrow the 17th any suggestions on what I should ask or other paths to take. This affects my ability to work. I read something on another thread that read ´Specific sets of fluctuating muscle weakness that are exacerbated by heat & repetitive muscle use, improve with rest and cooling´
That describes my symptoms exactly and I'm wondering what else it could be the only reason I think I have MG is because that's what 2 Nueros thought upon examination. I hate to admit this but I had never heard of MG prior to seeing the first Nuero. Thanks for allowing me to vent I would appreciate any advise from any member willing to respond. Thanks
Edalone is offline   Reply With Quote
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


Similar Threads
Thread Thread Starter Forum Replies Last Post
TOS - diagnosis, care & treatment tshadow Thoracic Outlet Syndrome 0 05-26-2010 04:35 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 05:20 PM.
Brought to you by the fine folks who publish mental health and psychology information at Psych CentralMental 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 - 2018, Jelsoft Enterprises Ltd.
Search Engine Optimisation provided by DragonByte SEO v2.0.31 (Lite) - vBulletin Mods & Addons Copyright © 2018 DragonByte Technologies Ltd.

All posts copyright their original authors • Community GuidelinesTerms of UsePrivacy Policy