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

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Unread 09-21-2011, 09:38 PM   #11
Stellatum
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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
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Unread 09-22-2011, 07:13 AM   #12
Beannie
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Default 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!
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Unread 09-22-2011, 07:40 AM   #13
Stellatum
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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
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Unread 10-04-2011, 10:37 AM   #14
Beannie
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Default 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!
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Unread 01-20-2012, 11:40 PM   #15
Seamus
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Default 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.
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Unread 01-24-2012, 08:28 AM   #16
cainca
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Default 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
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Unread 01-25-2012, 01:17 PM   #17
Stellatum
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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
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Unread 02-06-2012, 01:13 AM   #18
69gto73
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Cool 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
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Unread 02-16-2012, 05:36 AM   #19
Dr Mukesh D Jain
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Help 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.




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
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Unread 02-20-2012, 10:33 AM   #20
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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.
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