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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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07-24-2016, 01:27 PM | #1 | ||
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New Member
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Hello everyone,
This is my first post here (was on Daily Strength but very frustrated with website updates). I've had many struggles for almost 5 years in getting a diagnosis. I'm antibody negative for AChR, MuSK and LEMS. My SFEMG in 2013 was negative. Last month's RNS and NCS and EMG were all negative (can't do SFEMG in our small city). I've been on Mestinon since November 2013 when a bigger city neuro did a trial for me. It was a "Lazarus effect" for me, giving me my life back in 3-4 hours windows. I started on 60mg x3 per day. Breathing troubles overnight saw me increased to 60x4 per day in 2014. This week has been very hot and yesterday I was walking three blocks, with my walking sticks outside, slightly uphill. I was 1 1/2 hrs after my dose, usually in good shape at that time. I arrived at the theatre and couldn't open the door. I used the accessible entrance and collapsed on a chair. I was short of breath and breathing rapidly. I headed to bathroom to put cold water on my face and neck and needed help with the door again. After a 15 minute rest in the nice cool lobby I was fine. Today was a similar adventure but was grocery shopping in an air conditioned store. Again less than two hours after a dose and my feet were dragging and breathing was rough. I had been awake at night with a bad leg cramp but nothing else, virus, etc seems to be at play. The next appointment with my family doc is in 10 days, just a week before a trip to Europe. I need to figure out who to see next and where. I've had two neuros (one claims to be MG expert but really isn't) that I don't have MG. The one who put me on Mestinon says I don't have it because I only slur my words in the cold. So I am seeking advice for my next GP appointment. I think I'll go when off Mestinon for about 15 hours to show him what I look like. I have other strange endocrinological issues so am thinking about a neuro who specializes in mitochondrial diseases as well as MG and exercise intolerance, a big problem for me. Any ideas? I live in Eastern Ontario, Canada. Flutebell |
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07-24-2016, 05:11 PM | #2 | ||
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Member
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Hi Flutebell,
I am sorry to hear about all that you are going through. I had similar problems in the past. I had negative blood test results for MG, and also my EMG/SFEMG tests were negative. However, I have the symptoms of MG. Like you, I respond to Mestinon. I also had some serious exacerbations which landed me in the emergency room and ICU. I live in California, and our medical system is different than yours. If you have the option of seeing a neurologist at a teaching university who specializes in MG, that would be a good step to take. Even so, it may be hard to get a diagnosis since you have had negative tests thus far. If you do see another specialist, yes, you should skip the Mestinon that day. Take it right after your appointment. This is especially true if they will be doing nerve testing. They can't get accurate results if you've taken Mestinon. In my case, I have a brave neurologist who is willing to diagnose me on the basis of my symptoms. She has seen me at my worst several times now in the ICU and ER. She believes I have MG, even if it somehow isn't showing up on the tests. If it is possible for you to get a second or third (or fourth) opinion, I encourage you to do so. Meanwhile, please be careful in the heat! It is best to avoid it if you can. Take care, Erin |
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"Thanks for this!" says: | Flutebell (07-24-2016) |
07-24-2016, 10:37 PM | #3 | ||
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Hi Erin,
Thanks for telling your story. I don't think I've run into anyone who tests exactly like me. Any other negative antibody folks always had some EMG or SFEMG findings. My symptoms are worse in heat, cold and when my thyroid dose needs increasing or if my calcium or potassium are low. My last ER close call was with a "just below normal" potassium but that was 5 years ago. I'm working really hard to keep all things balanced and at least my GP has realized that he has to walk a fine line with me. He ignored my slightly high TSH in June, until I booked an appointment, begging him to treat me. I was out of breath walking ten steps from waiting room to his office! I'm feeling better on a higher dose and the pulmonologist (who also thinks it might be MG) gave me a new puffer that has helped my worsening asthma a lot. I think I'll have to draft the document for the family doc, with the various interventions and evidence I have. The doc I'm thinking of seeing is well known in the mitochondrial disease world and also treats MG. My reading shows the next way to confirm seronegative MG is to do a muscle biopsy to rule out other nasty muscular diseases. If it is clear, then it is MG. A muscle biopsy has been mentioned by two specialists but they chickened out when they noted my low white blood count. One even said "You should have a muscle biopsy closer to home, in case you get an infection"! Yet my small city can't do them. The doc I want to go to is at a teaching hospital and has a reputation for doggedly pursuing difficult diagnoses. I tell friends I need a Dr. House, but nicer, as my episode is years long, not just 60 minutes! Flutebell |
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07-25-2016, 08:26 PM | #4 | |||
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Flutebell, Sorry you're still in the diagnosis limbo. I did not have 'any' positive tests for mg for the first six months, but neuro was 99% sure that was what I had.
Eventually tested positive for Lems, but not until this past December, after four years did I have a positive single fiber EMG. Don't give up. Keep seeking. Some doctors will treat without a concrete diagnosis. Glad mine did or I don't know what would have become of me. Before the single fiber, I went off mestinon for 24 hours and dap for about six and I was a limp mess. |
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07-25-2016, 09:02 PM | #5 | ||
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Junior Member
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I too have switched here from daily strength. I am also passing all the tests, but I have severe bulbar muscle weakness so the next step is a Tensilon test using my MIP and MEP (inspiration experiation pressures) as the guide since I don't have ptosis except in the middle of the night. Mestinon works great for me. Yes, Lazarus is a good description. After tensilon my next test is the muscle biopsy. Hope you can get one.
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07-26-2016, 12:54 AM | #6 | ||
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Grand Magnate
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Hi, Flutebell. Welcome to the NT forums!
I'm sorry you haven't been diagnosed yet. It's almost worse than having a disease! Are you on any other medications or have any other conditions? Any other symptoms? I'm asking because you mention being anemic. Is there a cause for that (i.e., a period)? Do you take iron (plus vitamin C to absorb it)? There isn't much blood loss from a muscle biopsy. Unless you are on blood thinners or have a bleeding disorder, it should be fine. And they can always premedicate with antibiotics and give you a full dose of one IF you get an infection afterward. I didn't get one. If you take care of the area afterward, it should be fine. I have to tell you that a trip to Europe when you are doing so poorly is, well, asking for it! You combine how poorly you are doing, with the constant moving around, plus the jet lag (which tanks the adrenal glands and that alone can bring on a MG crisis), then I hope you know where every hospital is where you will be! You can't push MG. It'll push right back. Why are you pushing yourself right now? Stay out of the heat. Quit doing physical activities. Your body is SCREAMING at you to not do that! If you have MG, a MG crisis can come on rapidly. There's no way to predict how severe it will become, either. And it takes longer to recover from a crisis than it does a slight increase in weakness. Why do that to yourself? Have you had your IgG levels tested? If they are low, you can have a false negative AChR antibody test. Myasthenia Gravis: Diagnostic Tests Antibodies both circulate and are bound to tissues (which is where they attack!). Maybe your antibodies are too busy attacking tissues right now! A virus does not cause a bad leg cramp!!! Oy. Walking too much and having weaker legs does. Quit being in denial. It could end you up in an ER. MG is all about doing something, becoming worse, and being relatively better with rest. It's not like a rubber band that you can keep stretching. MG snaps and often when you least expect it to. It can also trick you. You can become weaker so slowly that you might not know the difference between okay and bad. I'm serious. I couldn't squeeze the doctor's hands in urgent care right before my MG tanked. I was barely able to move or breathe once I made it to the hospital. Until you know what is going on, you have to be careful. Why are your calcium and potassium low? You need to see an endocrinologist to have that evaluated. They can be signs of another disease. Calcium can be low for many reasons, such as not enough stomach acid or celiac disease. Do you have an GI tract symptoms? Did you know that Mestinon can make asthma worse? It actually caused my asthma. By "puffer," do you mean Flovent or another steroid? If you are on a steroid, inhaled or swallowed, that can make ANY MG tests look normal when they're not. Are your doctors even aware of that?! Only a neuro-ophthalmologist can say for sure whether you have ptosis when it's not obvious. They have specific tests they can do to show that and double vision. You can always take photos of your face in the morning, later in the day, and at night to compare. The lighting should be consistent, as should your head angle. Have you held your pointer finger in front of your face to test for DV? Move the finger from center to the right field of vision (not moving your head, only your eyes). Do the same on the left side. Do you see one or two fingers? If you see two, does it go away when you close one eye? If so, that's binocular vision that people have with MG due to the eye muscles focusing the eyes differently. A diagnosis of MG is not always that straightforward. Many factors come into play. And antibody tests fluctuate over time, as Limpy said. What else can we help with? I think you need a couple more doctors, plus that muscle biopsy. And please tell your doctors that a steroid inhaler does indeed go systemic and can make the tests look normal when they might not be! I hope you get answers soon! Annie |
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07-26-2016, 06:54 AM | #7 | ||
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New Member
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Hi Annie,
Thanks for your detailed reply. My trip to Europe is a river cruise with bus day trips so I should be okay. It was booked last September and might be my last big trip. I'm much better now that it is cooler here. I have a strange, as yet, undiagnosed low blood calcium condition. I've seen three endocrinologists before I finally found one willing to treat me properly. My low white blood count is a life-long thing, just the white blood cells, not the red, so not anemic. I am a likely celiac (mom gene-test confirmed) so went strictly gluten-free 8 years ago in order to try to solve the calcium problem. I have fat malabsorption that makes keeping the Vitamin D and calcium in range a bit difficult. My potassium gets low quite easily, despite a banana, orange, orange juice, leafy greens and nuts and seeds every day. I do have low stomach acid and take betaine hydrochloride supplements. Recently we added digestive enzymes too. I've been thoroughly worked up for GI issues - the docs totally missed the low stomach acid as the cause of the diarrhea I had 6 years ago, despite the fact I told them repeatedly that my mom has NO stomach acid. A naturopath made the diagnosis for me and started me on the supplements. So I likely have more than one condition going on. I have somewhat dry eyes and mouth and the Mestinon's side effects helps counteract those symptoms. I've had all my IgG levels tested, looking for IgG4 disease - all normal. Because I've never had a crisis, the various docs keep saying "You don't have MG!". So that is why I keep travelling, assuming each trip may be my last. This calcium problem has been going on for 8 years, the muscle weakness at least 6. Mestinon has always made my asthma better, not worse, another thing that perplexed the neuro who gave me the trial of it. She said "It isn't a drug of abuse; I'm fine with you staying on it". Thanks for the info on the steroids affecting the tests. I'm on it for summer allergy problems so will try to get tested in fall or winter when my asthma is much better. I have no double vision or ptosis - another reason docs think it isn't MG. I really appreciate all your input and will push my family doc to start the next referral and put "red flags" on it so it moves faster! Flutebell |
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07-26-2016, 09:21 AM | #8 | ||
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Grand Magnate
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Have your doctors checked your parathyroid gland or done any imaging of your brain?
If Mestinon makes your asthma better, it might not be only asthma. Mestinon does not make asthma better. Doctors don't "get" the low/no stomach acid issue because they are so busy doling out the antacids/acid blockers pushed by drug companies! I had a B12 deficiency from that years ago. Have you had your B12 checked? Did they check you for pernicious anemia? I missed where you said low WHITE blood cell count. I do have double vision! Seriously, no one has figured out why? Have you seen an immunologist? Have you ever been tested for lupus or have any symptoms of it? I think someone needs to pull all of this together and figure a few things out. This is ridiculous! Annie |
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07-27-2016, 07:18 PM | #9 | ||
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Grand Magnate
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Your low potassium makes me wonder if you have this rare disorder.
Episodic Muscle Have they tested for that yet? Annie |
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