Your diagnosis, treatment & other information
 

Feel free to use this sticky thread to post your story of diagnosis, health history & treatments.

Post any questions or topics to discuss in the main discussion area..

Here is the link to make a new thread for discussion-
https://www.neurotalk.org/newthread....newthread&f=77

My story: I have Graves' disease, which has been in and out of remission for ten years. I take PTU when it flairs up. In the fall of 2009, my five youngest kids got H1N1. I took care of them for two weeks, but never got it myself. Towards the end of the two weeks, I inexplicably collapsed--I just became too weak to hold myself up, and ended up on the floor.

After that, I started losing my balance a few times a day while walking. I also noticed occasional weakness in my arms and legs. My neck became so weak that holding up my head was at times difficult.

By about January, I was having trouble walking at times. My main symptom is a weakness in the muscles of my side and back, which makes it hard to hold myself upright from the waist up. During a bad spell, usually late in the evening, I also have weak legs.

I am not diagnosed. My MRIs are normal. My blood tests are all normal--no antibodies that they can find. My SFEMG came back slightly abnormal, but not enough to diagnose me with MG. That's because the doctor only tested muscles in my legs, which are only slightly affected. He says he can't test the weak muscles in my sides and back because he doesn't have numbers for what's normal for those.

I am on Mestinon, 60mg every three hours while awake. Sometimes I think it helps, sometimes I don't. The last time I saw my neuro, I was in the middle of a very good spell, almost a remission, that lasted a month. Since I have no diagnosis, and I was doing OK, he didn't want to start me on immunosuppressants. Now that I am getting worse--having trouble walking at all for large parts of the day--I hope he will be willing to try something more than the Mestinon.

I would love to hear from anyone who has my atypical symptom: weakness in the sides and lower back that makes them tilt back and forth from the waist up when they try to walk.

Abby

update
 

I'm updating my last post to this sticky "your diagnosis" thread. I see I'm the only one here, but I think this is a good thing to do. I have found it helpful to read other people's stories, and get a sense of the variety of ways MG can affect you.

I am now diagnosed. I had three antibodies blood tests, all negative, and three SFEMGs. The first was "borderline" and the second was mildly abnormal. But what gave me the diagnosis was the third one, which was a stimulated SFEMG on my face (even though I have only very mild facial symptoms). This was done by a specialist in Boston. I am going to start Imuran soon.

Abby

my situation please help
 

Hi all
Lately I have been experiencing weakness in my legs that is accompanied by the intense feeling of a sense of my muscle just having wood in them. I loose my balance and fall into the wall. my upper body is ok-not near as bad and it catches me when i am falling. I feel so weak and and always exhausted. My cervical and brain mri were unremarkable. I am scared at how fast this is progressing. It came on so fast. What are your thoughts? I was originally diagnosed with Fibro due to the fatigue and always being tender. have any of you had this before?

about me
 

I am having a lot of trouble with balance, muscle sensation, brain fog, memory, exhaustion. I dont know what to do anymore

My Story
 

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! :mad:

Sorry for the long winded story
Swallow123

Thanks to all for posting your experiences, and a special thanks to Swallow123. I find myself in the maybe he does maybe he doesn't camp right now. I'll start from the beginning.

5 or so years ago- After a particularly stressful time at work, my eyelids drooped. This lasted about 4 weeks before bouncing back. MG was suspected, but nothing much was investigated.

3 years ago- Collapsing spells. Strong emotion such as sadness or laughing would cause me to lose all muscle control and collapse to the ground. Usually laughing really hard caused this. I tried to fight it each time, but each time I would lose and eventually just have to fall. This started after my grandmother's death. Neurologist diagnosed me with isolated cataplexy and called it a day. This cleared up after a few months.

Inbetween these 2 incidents I had troubles with muscle control especially when laughing. If I was holding a glass, my arm would just drop like a rock sometimes, but for the most part it was manageable. Came and went, so I didn't really worry about it.

Last year- Woke up with double vision. Saw my GP, opthamologist, neuro opthamologist and then a neurologist. MRI's x 3, CT, and lots of blood work all came back negative. Multiple sclerosis was the suspect. My double vision went away after 6 very hard months, but I was left without the ability to voluntarily move my eyes left or right for an additional 4 months. The scheduled me for a spinal tap.

2 months ago- a couple of days before my spinal tap, I started to feel my muscles shake again when I would make demands on them. The day before the tap I awoke with extreme weakness in my body, mainly in my shoulders. It affected everything I tried to do. Took the bus to the doctor. Almost didn't make it off the bus as the weakness nearly overwhelmed me. On his advice, I checked myself into the ER at St Pauls the next morning. I was admitted into the hospital for 4 days on Mestinon and IVIG treatment. I started to improve a tiny bit each day. The resident neurologist was certain it was MG. Given 60mg mestinon x 3 a day. Just under 2 weeks after leaving hospital, the weakness was gone, stopped taking mestinon, and got back to my life as it was.

3 days ago- saw the MG specialist in town on a check up as the IVIG should have run it's course. She said everything looked good, but everything that's happened does not fit MG. ACH and single fiber EMG tests normal, thyroid levels normal, thymus unremarkable. Nodule on my thyroid that was biopsied while in hospital, but no news on that yet.

Last couple of days have been a bit worrisome though. I feel some familiar shakes coming on. No weakness per se, just the feeling that I am over caffeinated. A little trembling when I laugh. Took a mestinon today just to see.

I hope it's not coming back. Although, I have been able to trace each instance to a major stress, which should help me keep a little control. Maybe. I don't want to go back into hospital, and I really don't want the IVIG again, but I'll do it if I have to.

2 things are getting me through. My girlfriend stood by me every day in hospital, and has been a huge help. My family as well to some extent, but they have decided to become google Doctor's, and like to give me advice on how to deal with it. My Dad thinks I should take up running. I don't think he knows what MG really is. The other thing that is getting me through is the big dumb smile on my face. I am trying my best not to let it bother me, and just accept it as it is. We shall see what happens in the coming weeks I guess.

That's me so far. Thanks to everyone for sharing their stories, and I hope some of my experience can be of some help to someone.

Thanks for listening,

Ryan

Difficult to diagnose??
 

Struggling to understand if my symptoms are caused by real disease or by my mind. I have been dealing with this for over 9 months, but after many negative tests, one has to wonder...

It started with my wrist/arm and weakness/numbness. I was told I had extra cervical ribs and that I had a pinched nerve. I did 3 months of OT and PT. The only improvement was from the short course of steroids I did during that time. Things plateaued... it wasn't much better or much worse. It moved into my left arm, but still not too much. I saw a neurologist eventually and had a negative EMG and a negative cervical spine and brain MRI. I decided since everything was normal that I needed to just chill out. I asked if I could have a conversion disorder and my neuro didn't think it was likely, but he appreciated my desire for my symptoms to be harmless. So I just kept on keeping on.

Then 2 months ago, it started to become increasingly difficult to climb the stairs, wash my hair, run, empty the dishwasher, etc... It got worse as the day wore on or if I exerted myself excessively. Saw the neurologist again, and confirmed that I now have significant muscle weakness - especially in my legs. I had another EMG, evoked potentials, another MRI w/contrast and tons of blood/urine. EMG, EMG w exercise/rest and EEG were normal, regular MG antibody test was normal, and waiting on everything else. In the past 3 days, I have developed jaw fatigue as well as excess saliva. Chewing and swallowing only seem to bother me at night. I gagged tonight trying to swallow the Mestinon! That was after trying to eat a raw carrot :)

The neuro wanted me to try Mestinon... 60 mg x3 upsets my stomach but actually seems to mitigate, not eliminate, my symptoms. Improves my grip strength and seems to reduce the heavy, fatigue feeling in my legs - especially at night. I know that Mestinon can improve anything that affects the neuromuscular junction, so I'm not sure that it tells me anything. I tried taking only 30mg and didn't notice anything. I am wondering if taking something is just placebo? Maybe because I want it to be.

My symptoms seem to point to MG, but how could I have this if all of those tests are negative? I have not had a SFEMG, which I have read about on here, but don't really understand how it could be different from what I've already had. Bueller? Bueller?

Beannie, I was surprised to read that you have not had a SFEMG. It's considered much more accurate for the diagnosis of MG than a regular EMG. Not every neurologist knows how to do one--you have to find a neuro who specializes in neuromuscular diseases.

SFEMG is the test for seronegative patients with symptoms that suggest myasthenia gravis. I hope you can have this test soon.

Also, you say the "regular antibody test" was negative, and that you're waiting on other tests. Are they testing for other MG antibodies? They should test you for MuSK antibodies and LEMS, too.

Abby

SFEMG was ordered...how do they do it?
 

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 :)

Make sure you're off the Mestinon for 24 hours--preferably more--before your SFEMG! It can give a false negative. Also, make sure you're nice and warm. If the room is cold, or you're chilled, they can warm you up with a heating pad.

A SFEMG doesn't involve electric shocks. That's the good news. They will put needles into your skin, but they're thin needles like used in acupuncture. Then they'll ask you to slightly tense the muscle and hold it. The whole thing takes about 45 minutes. They'll try different places. The needles stay in for a while while they collect data.

If the needle hits a nerve, it hurts, but you don't have to put up with the pain. If you tell the doctor it hurts, he can move it to a less sensitive place.

The muscle-twitching isn't new, is it? I ask because that can be a side-effect of Mestinon. Mestinon also makes my mouth water. I'm lucky that it doesn't bother my stomach--that's a common complaint.

I hope you get some answers soon, and that they're answers you can live with. Hang in there. Let us know how it goes.

Abby

hot and cold
 

Would it also give false negatives to bloodwork? They had me try it last week and then did my bloodwork the next day...

The warming thing is so interesting too. It is freezing in the EMG room. I'm not sure how I can stay warm in there. Can that effect the other EMG tests?

The twitching has been since February. The neuro says that if muscles are getting proper signals, they can do that intermittently. The Mestinon certainly makes it more pronounced!

The only thing is that I don't have any eye symptoms. My eye muscles ache a little, but no one seems to think that is of any concern. My vision has always been bad, but it is even worse at the moment. I am going to go see my regular ophthalmologist because when they did the evoked potentials I discovered that I am 20/40 and 20/70 with my contact lenses in! I am old enough for my eyes to not be changing :) Or if they did, they would get better, since that tends to happen to people with nearsightedness as we near 40...

Thanks for the information!

No, the Mestinon should not interfere with the bloodwork as far as I know. The bloodwork is looking for antibodies. What Mestinon does is inhibit the enzyme that breaks down acetylcholine--that's the chemical your nerves use to communicate with your muscles.

I don't quite understand what the deal is with the cold. I know that many myasthenics do better in the cold (and worse in the heat). I know that one of the diagnostic tests they use for myasthenia, for a patient with a droopy eyelid, is to put ice around the eye. A myasthenic eyelid will perk up with ice.

I don't have eye symptoms either, except for some eye strain--when I get tired, my eyes ache, and it feels like it's hard to move them. I had double vision one evening, but only one. However, my doctor can see abnormalities in the way my eyes move.

Abby

SFEMG this morning
 

I had the SFEMG this morning...

The doctor who did the test wouldn't tell me anything, so I'm waiting. I don't understand why they only test your forearm?? I am weak in so many muscles but not anything significant there.

The only thing the doctor said was that he needed to increase the sensitivity. He told me he needed to check the numbers and he would send the doctor a report.

Side note: I feel so much better since it has gotten colder here in the Northeast!

My story
 

In 2006 I was having trouble identifying people. As they got closer to me my eyes started to close. I finished work early and drove home. As I was driving my eyes kept closing and I had to hold one eye open to enable me to get home. The following day my eyes returned to normal. Over the next couple of days I had double vision for short periods ranging from 30mins to 2 or 3 hours. I went to my GP who diagnosed eye strain. My syptoms had disappeared the day before I saw the GP.

Over the next couple of weeks my eyes would close and give me double vision at times. Driving had become impossible, traffic on the opposite side of the motorway appeared to be heading straight towards me. I was unable to judge distances.
At this stage my arms and legs were becoming very weak I had to hold my head up as my neck muscles were very weak. I had trouble getting out of bed. I went back to my GP and he sent me for several XRays and blood test. All the test did not show up anything...
About 3 weeks after the double vision I started to have trouble eating and swallowing. I was sent to emergency at the local Hospital. I underwent numerous test over a 10 hour period. The end result was the doctor had decided that my "Illness" was caused by stress. He kept haraunging me and my wife to find out what was causing my stress. I was discharged from the hospital after the Doctor had decided that I needed to see a Phyciatrist.

That night I tried to lie down in bed but each time I struggled to breathe. An ambulance was called and they checked me and came to the decision that I was in no danger and should see my GP the next day which I did . He could offer no suggestions and referred me to the outpatients Dept at the Hospital. The earliest they could fit me in was in 2 weeks. For the next 2 weeks I sat in a Lazyboy armchair and leaned on an ironing board to get some sleep. If I tried to lie down I stopped breathing I lost 14kg in that time.
After my visit to outpatients the only thing they came up with was that I had type 2 Diabetes.
For the next 8 weeks I was confined to the lazy boy chair and to eating mashed baby foods. I was again rushed to the hospital with breathing problems and put on Oxygen. They kept me in for a couple of days but could not find out what was causing the problems.
After another 2 weeks at home I was sent back to the Outpatients Dept. This time the doctor called another person into the exam room. It was a Neuro. He held a pen just on my eyeline and moved it up and then he pushed my fist down a couple of times. My eyes closed and I couldn't resist when he pushed my wrist down. I heard him say that it was a classic case of something or other. He then left and the doctor turned his computer screen towards me and said ' this is what you have" All I could see was a screen filled with lots of lines. I asked if there was any info available and he told me the only info was on the internet. He gasve me several MG Organisation to contact.
He then gave me a prescription for Pyridostigmine. The scrpt said to take 2 tablets a day.
The next day I took the tablet and I started to feel great at least for a few hours. I rung my GP and he found that the doctor in the hospital had put the wrong dose on the script. I should have been 2 tabs 3 times a day. I was almost back to normal once I had the correct dosage.
The Neuro who diagnosed MG deals with most of the cases in the area I live.

Since 2006 I have not met (other than on the internet) anyone else with MG. It is very rare here.

Does any of this sound like MG?
 

Hi All....I appreciate this opportunity to be able to join this forum for some of your input on maybe what is going on with my husband. Back in Aug., his back starting hurting him (lower back on side), bad enough so that he couldn't take our nighlty walks-couldn't walk even a 1/2 a block! So he went to a chiropracter for an adjustment, which was fine until the next day, severe shoulder pain! As time went on he started to lose weight, for no reason, about 35-40 pounds worth since Dec. or so. Then his neck starting hurting too & I noticed that his gait was somewhat off when he walked. When he walked, his neck & shoulder pain was & is pretty bad....then the fatique set in! So he had an upper & lower MRI which showed that he had "arthritis" around C2-C3. Pain tx. sessions were set up with shots, but due to an UTI, he couldn't go through with it. His pain specialist put his tx. off until he took further tests to see what was going on with him (that was after I insisted in him watching my husband walk down the hall re. his gait-it is painful to see him struggle due to the pain. When he is seated or laying down, he is fine! As time went on (Dec.), he had to have 3 rounds of anti-biotics before it went away! Then I noticed a change in his voice...more hoarse sounding in the morning, then got better....now it is hoarse sounding most of the day.
So here we are today....a total of 3 MRI's-including the brain, 3 cat-scans (from neck-abdomen), colonoscopy, chest x-ray, all sorts of blood work, and I think that is it. Tomorrow we are going to see the ENT for a scope test to look at his vocal chords. So here is my question....does any of this sound familiar to anyone as far as any significant symptoms of a disorder? He hasn't worked since early Dec. and is beginning to go stir crazy! He is 57 years old & such a hard worker, this is so hard on him sitting around the house waiting to see why he is feeling this way! I have thought of everything from cancer, to ALS, MG, MS. We are strongly considering going to Barnes! Any thoughts & comments would be appreciated....I think not knowing is worse then knowing, at least you have something to start with! Thanks all, Cathy

Cathy,

I moved your post to its own thread in the main forum, where it has some replies. If you go to http://neurotalk.psychcentral.com/forum77.html you will see all the topics being discussed. The thread entitled "Does any of this sound like MG" is yours.

Abby

New to site
 

Hi folks, I'm new! I am a grandma who hasn't felt well for well over 40 years. I had to quit work as a nurse in 2003 due to my health. A couple of weeks later I was so ill I could hardly get out of my recliner.
I have doctored for years and had gotten to the point that I was darned if I was going to die without a diagnosis. The doctors always said it was in my head. Finally got diagnosed with sjogrens in 2003 by lip biopsy---negative blood work though.
I was very ill much of the time and had lots of bad infections--MRSA and I also had Mycobacterium kansasii (a form of noncontagious TB) and had to be treated for one year with 8 antibiotics pills (3 different kinds) a day.
Eventually I was sent to a very good immunologist who changed my life. He believed me!!! His FNP did my work up and read through the 11 pages on one side, that I had written for them plus all the paperwork they had for me to fill out. The immunologist introduced himself the first day for a few minutes and in those minutes he told me he thought I had myasthenia gravis.
I had the nasal twang which I have had for more years than I can remember. I also had a little drooping of the eyelids. I could not believe it as I had been questioning docs for years and they would all tell me I didn't have MG or sjogrens.
Well, the immunologist also did a whole bunch of blood work and it turns out that I have extremely low t-cells. Like as low as an AIDS patient. This low cell count, however, is related to the autoimmune disease. I also have Bullous Pemphigoid and asthma.
This low t-cells count really explained all the infections I have had since the 1970's. He also diagnosed my Hashimotos and my titers were off the charts. I am entering my 6th year of IVIG as I can't have Imuran, etc due to the chance of getting bad infection. I just started Plaquenil this past summer and it has helped my energy level and decreased some of the bad swelling in my sinuses, nose and throat.
I will be visiting on occasion and am interesting in hearing about new treaments and other MG issues. I have never had a crisis for which I am extremely thankful. I have told doctors for years that I often felt like I would quit breathing. Now I know what that was all about. Be back later. gto

Sprouted Seeds & Yoga can help MG
 

Have you ever tried natural nutritional plus Yogic support for muscle weakness/ fatigue or sensory loss. ? I am writing to inform me that Sprouted Mung ( Phaseolus aureus), Chana, Methi and Ajawain seeds are recommended as a powerful breakfast in patients with neuro-muscular diseases including MG.

You should eat sprouted cereals (Mung + Chana + Methi seed + Ajawain seeds). Unlike grains that have undergone processing, sprouted grains are filled with nutritious elements. They provide the best source of vitamins and minerals. Sprouted cereals / grains actually encourage good bacteria to thrive in the body and keep the colon clean. The quantity for one person is:-

Mung Dal (Phaseolus aureus) 2 teaspoon, Chana ( Cicer arietium), 1 teaspoon, Methi (fenugreek seeds) 1/2 teaspoon, Ajwain (Trachyspermum copticum) 1/4 teaspoon; Wash and soak this mixed grains overnight ... . Next day remove the excess water and cover it. After one day you can see sprouted cereal. The seeds will germinate. Add slices of fine chopped onion, tomato, coriander, ginger + black pepper and lime juice. You can add boiled potato also and eat with proper chewing. This is followed by a glass of fresh juice from any seasonally available fruit or you can drink a glass of fresh butter milk. It is powerful breakfast for MG patients.

Sprouted seeds are excellent food for all neuro-muscular disorders. They are high in enzymes and their minerals can easily be absorbed. Easy to sprout are Mung beans, brown lentils and fenugreek. If chewing is difficult, these may be juiced as well. Yogic breathing technique and Meditation are useful in the lasting relief from debilitating symptoms of MG.

I have just spent 4 days in Hospital with breathing problems and mobility problems. This is the first time I had a quick response in the emergency dept. Normally a patient can wait up to 6+ hours, but the nurse saw my medic alert bracelet and I was seen within 10 minutes much to the disgust of a full waiting room. I have a viral chest infection and according to my Neuro my mestinon had to be increased.
It finally seems that the hospital staff are realising that some conditions need to be treated ASAP if not sooner. I have waited for hours in the past.

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!

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 :):hug:hope to encourage others and live a happy life no matter what.

mg
 

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.

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

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!!!

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.

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.

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

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.

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.

Hi, and welcome. I'm so glad you're seeing a neuro who is testing you for MG. Please know that negative bloodwork doesn't rule out MG. Many of us here have never tested positive for antibodies. Also, if you test negative for the AChR antibodies (the most common), they should test you for LEMS and MuSK. Even if you test negative for all three, you might still have MG. There are other antibodies that cause it, and some people test negative at first and positive later.

Has anyone suggested POTS (Postural Orthostatic Tachycardia Syndrome) to you? I learned about that here, because some of the symptoms mimic MG. It would be worth googling. It causes a lot of the symptoms you mention.

I find it very hard to stand in line, too, and I think you're right: it's because it puts continual strain on the same muscles. I have a rollator (rolling walker with a seat) that I bring to department stores or anywhere that I'll have to stand on line. That way I can sit.

It's typical of MG to get worse when you have an infection. My guess is that an infection kicks your immune system into high gear, and then it produces more of the antibodies that are attacking the neuromuscular junctions, but I'm not sure if that's the real reason.

Many of us here have thyroid problems. Did you take PTU or methimazole (thyroid suppressants) before your thyroidectomy? There's a study that suggests that these drugs can cause MG. I think that's how I got it. If you're interested, I'll try to find the link.

Since your thyroid gland has been removed, I'm sure you're taking synthroid or some thyroid hormone replacement. Do you have your numbers checked regularly to make sure you're not taking too much?

Please feel free to ask questions here.

Abby

Thanks Abby, for answering my inquiry. Yes, I remember seeing Musk on the bloodwork order, but not sure about LEMs. I will check out the POTS info. Thank you for that suggestion. There are many times when I am standing in line that if it weren't for the embarassment and attention, I would prefer to lay down.
No, I did not take any thyroid suppressants before my thyroidectomy. I did take synthroid before to try to halt the growth of the nodules. I continued on the synthroid for over a year and fell into even further state of hypothyroidism. Felt like the walking dead. I finally was able to convince my family doctor to let me try Armour thyroid, which is made from ground pig thyroid glands and within two days I was a new person. However, I have been back and forth from hypo to hyper over the past couple of years due to not being able to keep a steady dose in me.
I have my levels checked more often than the doctors feel I should, but I can tell when my dose is not working properly.
I could have sworn I was hyperthyroid when all these palpitations began, but the levels came back normal, so they continue to bother me.
The cardiologist I saw last hooked me up to an event monitor and diagnosed me with paroxsysmal supraventricular tachycardia. He wants to refer me to an electro cardiologist to see about getting an ablation to stop the irregular beat, but I would like to stay on track with trying to get this weakness issue diagnosed completely before going down that path.

Mg DV
 

Hi Everyone, Newbeeie


First diagnosised May 2011 with Mg. My experience is the DV. I been wearing prizsm glasses along with takening steriods (30mg) and mestion time span(180mg). Dec.2011 the DV went away and I started decreasing the steriods down to 05mg continuing the timespan. Just recently after having stressful week ( May 2012) my Dv has come back. I have a doctors visit at the end of this month, but meanwhile i going to increase my steriods back to 30mg and get plenty of rest and try not to stress at all.

Hello Everybody….

I´m writing my story. It´s a long one, but it´s my only one ………

Before 2006, that person biking 50 km without needing to train, playing volleyball on a team, river rafting the rapids was me!! I was a great gymnast as a kid and could walk on my hands across the entire playground all in one stretch!!

I´m not really sure when it started, could have been pregnancy 2006 or a little later in 2008 when I detected the start of a very neatly fluctuating and progressive 4 year curve of fatigable muscle weakness.

By the time it had reached its peak in 2011, myasthenic weakness appeared to have two overlapping layers:
1) One that seemed to have a life of its own (general limb weakness)
2) Another that I could actually control (bulbar weakness)

The general limb weakness got WAY out of control in the end, starting in the deltoids and spreading progressively but slowly to the arms, hands, neck, trunk, thighs. And over a 4 year period I would notice a new action that I had difficulty performing with a certain set of muscles with each new flare up. 9 different antibiotics in 2009 did not help matters much. By April 2011 muscles would fatigue within 3 seconds of a repetitive activity.

I remember……….

• Almost beginning to drown when the muscles used for swimming just ´gave up´ on me.
• Feeling myasthenic weakness just waving goodbye, unable to finish a round of applause, problems writing and not being able to strum a guitar to the end of a short children´s song. A small rest of a few seconds would help. Opening jars and packets of chips was becoming virtually impossible.
• Having to lay on the floor many times to rejuvenate trunk muscles to be able to stand or just sit up again. By 4.30 p.m. enjoying my meal as if it was my last one because at any minute the chewing would go into slow motion mode, my hands would get weak cutting the food and I would start falling into my dinner plate by the end of the meal!! One afternoon weak trunk muscles made me sit down in the middle of the street!
• By April 2011 it was almost impossible to hold a telephone to my ear for more than 30 seconds, tie a shoelace, squeeze toothpaste, turn the pages of a newspaper, turn a key in a lock.
• I would put my makeup on in the mornings with my elbows pressed into my stomach and brush my hair the same way!
• The heart was pumping furiously and my face was sweating and hand shaking whilst simply passing the salt across the table.
• I noticed some very interesting changes in metabolism during what I call ……´my daily climbs up Mount Everest´….
• Eventually I lost the anacrusis in all movement (that little upbeat before initiating a muscle action)…You don´t know what it is until you´ve lost it.

One year of milder bulbar weakness came in January 2011 and was alleviated 2 weeks after the withdrawal of long term sedative use in January 2012.

I remember ………

• Reading a bedtime story to my child and finding out by accident that changing to another language I could actually articulate more easily and hold off my evening bouts of dysarthia by a few very valuable extra minutes………
• Having a single grain of rice stuck in the esophagus for 20 minutes. I figured that in the end it would either come up/go down or at some point disintegrate…..
• Choking on small amounts of liquids …even the spray from peeling an orange or the vapor in the shower sometimes started a choking reflex. Juice from food would gush down prematurely and a lazy and unpredictable epiglottis simply forgot to do its job properly.
• Being out of breath repeating a single sentence or even getting to the end of the first sentence was enough of a task in itself. Evening breathing ´in´ problems would sometimes last 4 hours.
• Earlier masseter muscle weakness whilst chewing was not all that prominent and eventually ´transferred´ into long term intermittent weakness in the superhyoid muscle area.
• Both voice and eyes would continuously go in and out of focus especially after heat exposure and would be relieved on contact with cold environments.

After the last and worst 3 month flare up which escalated to its worst peak ever, a sudden and unmistakable remission occurred on May 5th 2011. It came like an avalanche! Everyone noticed. It felt like a poison retreating over the course of 5 days. For example, On May 5th I could not lift a pillow without being out of breath however by May 9th I could lift 10 kilos, and most of the limb muscle weakness symptoms resolved 90% within those 5 days and without medication for MG. I remember staring at my hands over and over again wondering what I had done differently to make them work normally again (some actions like grasping took many additional months to strengthen)
The overlapping bulbar symptoms on the other hand resolved one year later in January 2012 on withdrawal of small sedative doses and then returned again with repeated challenge doses.

The joys of ´remission´........

I would dance just because I could and I would squeak like a little child….:Dancing-Chilli: ´Look at me everyone!!! I can zip, lift and swing my own rucksack onto my back and even carry it myself!´….`I can eat and cut my own food again!!! I can sit and eat my dinner without falling over into my dinner plate ☺ ....I can lift my arm to insert the visa card AND then hold it up long enough to press the code at the same time without taking a rest first!!!´The brain became extremely energetic, noticing and appreciating every single ´relearned´ muscle action during the next few months.
I never had medication and all the tests I took were negative (no SFEMG) A neurophysiologist and researcher in MG believed my story, :Thanx: and says I´m possibly in a remission lasting 2 years and thinks the blood test that I need simply hasn´t been developed yet. (I also initially had CFS which overlapped the myasthenic symptoms but of course was very different) Can a drug free spontaneous myasthenic remission without thyectomy provide 100% remission? Since I never had any positive tests then I will wisely keep my theory to myself!!!

During last year especially the going was getting gradually tougher & tougher. By inventing survival techniques my mind was kept busy in the same way that my body was physically occupied with all the myasthenic symptoms.
Those years of myasthenia were like an expedition up Mount Everest but without help and without the right kind of equipment.........
I´m not a sad or lonely person but this has got to be one of the saddest and loneliest journey I have ever made…..

Did you get any answers?

Did you get a diagnosis?
I have some similar symptoms. My Neuro-Surgeon said my problem was Neuromuscular.

MG, FM/CFS diagnosis
 

Hello,

I have recently been dx'd with MG after years of suffering. My regular neurologist sent me to one who specializes in MG. Many tests were performed & finally I was dx'd with MG after my blood work came in positive for Acetylcholine Receptor Antibody (ARA)

I have had severe swallowing, speech & breathing difficulties over the years. I have been in & out of remission now for about 6 years. My last bout was so severe, I dropped 20 lbs. I am petite to begin with & tall. (5'7) My weight dropped down to 100 lbs. I was dehydrated & starving. I managed to pull out of that somehow, even before being dx'd with MG. Have also had some severe reactions to 'low dose' medications & mild sedation for colonoscopy where I nearly went into cardiac arrest.

Because I am 48 & reaching the cut-off age for thymectomy, I am being booked to see the surgeon. I will see him, but still not sure I will go ahead with it, unless they find a mass in my thymus. Still have not had the scan to see what it looks like.

I manage to eat these days, though much more slowly than normally. I have also learned not to panic when choking on food & actually 'breathe' through it! My weight is up again, higher than it's ever been, though I am not thrilled with the belly weight I am carrying now.

The only meds I am on, are mestinon (just started 5 days ago!) & Nexium, as I have pretty severe GERD as well.

The mestinon gives me severe twitching, all over, but it's the worst in my face - especially my eyes! I have not been sleeping well due to it. So after reading posts from many others in another group, I decided to cut out my evening pill - unless I am going out for a night on the town, which is RARE for me anymore!

I was dx'd with Fibromyalgia many years ago & just recently CFS, due to a second blood test coming up positive for Epstein Barr Virus. I've also tested positive with some metabolic tests that were done.. but no one seems too worried about the poor results (which makes me question WHY these tests were ordered in the first place!)

I am EXHAUSTED on a GOOD DAY!! It's a good day if I manage to get the dishes done, the garbage taken out, showered, hair & makeup done! Mind you, some days when I plan to go out, I am exhausted after showering, fixing my hair & makeup, so much that I won't even bother going out!

That said, it's LATE & I need to get to bed!

Good night all! :thud:

I hope they will give you treatment besides the Mestinon and the possible thymectomy! There are drugs to suppress your over-active immune system. There are gentler but slower drugs like Imuran and Cellcept, and there's also Prednisone, which can have bad side effects but could be well worth it for you, since your symptoms are so severe.

Trouble swallowing is a medical emergency, and more than justifies IVIg or plasmapheresis! These are very effective treatments for MG. IVIg involves three to five days of antibody infusions (through an IV. It takes about four hours a day and it can be done at home). I've heard MG patients refer to it as "the magic juice"--it works extremely well for a lot of people, though it wears off after about six weeks. There are people here who have it every six weeks. It makes a huge difference for them.

If you are twitching so much on the Mestinon, ask your neuro if you can try a smaller dose. Twitching probably means you're taking too much. Too much Mestinon can make you weaker. You might find it works much better if you take less (but ask your doctor first).

Now that you finally have a diagnosis, I hope you can get some of the very effective treatments that are out there.

Abby

MG + peripheral neuropathy
 

This is more of a question. Have any of you found that along with MG you have also been diagnosed with a non-diabetic sensory peripheral neuropathy.

I have idiopathic neuropathy over my entire body, it started about 40+ years ago, now I have symptoms of sudden muscle weakess and sudden overall fatigue for no apparent reason. Tired eyelids and a need for enormous amounts of sleep. It used to be that I would recover after 15 or 30 minutes rest, but now it can be as long as 32 hours. Also, objects like cameras seem inordently heavy. My rib cage and longs are giving me fits with respect to feeling like the muscles and ribs etc are cold, and even on a hot day the air entering my lungs feels icey. Do these symptoms sound familiar to any of you that have MG?

These symptoms started about 2001 or so while and after I was doing my regular 3day/week work out at the gym. I had to reduce my weights to a minimum and do greatly reduced and mild work outs. Even so afterwards it was difficult to walk the 100 feet to the car. I has only gotten worse over time.

Hello everyone. I am 33 yr old old who was just released from the hospital and was diagnosed with MG.
When I went to the ER on Aug 8th they put me in the ICU because I was in crisis. I was on a vent for 16 days. While in the ICU they did 5 days of IvIG and that did not help. We then did 5 treatments of plasma paresis over a nine day period.
I am now home and trying to learn about MG and all my meds.

How did everyone else handle there diagnoses? Does it get easier? What should I expect?

I am so scared I will get sick and put back on the vent. What do I look for to prevent this?


Thanks!!