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Hey all!
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Not sure where you live, but I would go to the nearest University that has a Neurology school. They would be the best choice for multiple health issues. The University of Iowa has been very good for me.
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I appreciate the advice George! I am currently seeing a Neuro that has been in practice for over 55 years. He treated one of my sisters in a car wreck in ’78 and his partner treated my sister with MS. This is the Neuro that noticed my copper deficiency while the one at the local hospital, who actually asked for the test, ignored it.
That being said, I am fully prepared to move to another doctor if I feel I am not being diagnosed properly. The Ophthalmologist all but diagnosed me. Without saying I have MG, she said I have MG. I’ve been going down this path for far too long to not have a plan in place. My vision is getting progressively worse and I won’t tolerate a doctor that won’t work with me or value me.
Paul
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I agree find a new muscular neruo
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Paul, You need a new team of doctors. If you are in CT – go to Dr. Jeffrey Dewey, Yale Medicine. Sincerely, John
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I do have a new Nero. that deals in MG and other auto immune disorders.
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Paul, I can relate to your frustration. I was diagnosed by my opthamologist 5 years ago and then confirm a diagnosis with a neurologist. From then on it’s been all downhill. Gone from one eye somewhat droopy to now staying closed if not propped. Second eye closes to a slit as soon as I go outside. I find that small suture Band-Aids work wonders. With my eye closed I attached one side of the eyelid and then pull up and attach the other side to my forehead. Double vision is always a problem and I have developed essential tremors. They tell me that’s unrelated and is hereditary. I have weakness in my upper legs and suffer climbing stairs. I get up around 6:00 a.m. and by noon I am shot. I have tried pyrodstigm, prednisone and each worked for about one day. I am hoping my answer lies within a specialist for mg. I see that specialist in Richmond Virginia on the 6th. You will find everyone’s journey is different but the key is finding the team of doctors that don’t just pass you back and forth and can give you some solid advice and treatment. If you don’t find it in the set you have find new doctors. The best Advocate you have for you is you. Good luck in your journey2.
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Thanks and the best to you.
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To all, this is all GREAT info. Thank you!
I am happy with my current Neuro as he is the one that caught the copper deficiency and is working with me on it. That being said, I am not opposed to finding another doctor if I don’t get the help I need.
Doctors are like any other profession: they all have their Juniors. I’ll explain. I worked for a local company that made resins for all sorts of industries. We had a worker named Junior. Junior was a great guy and meant well. Heck, I even mentored him and tried to push him in the direction of expecting better. But Junior was an underachiever that Murphy (from Murphy’s law) always seemed to find. One example is that he came around the corner in a fork truck too fast. He quickly crashed into the parked fork truck that his friend left there.
So there it is, Junior. Every occupation has it’s Juniors and doctors are no different. I mention this because I have had three ophthalmologists and they have all indicated the same thing – MG. But that one Neuro-Ophthalmologist that I saw over the summer looked into my eyes and declared “you’ve had cataract surgery”! I have not. I don’t even have cataracts. All the optho’s have said I don’t. What I’m getting at is that Neuro-Ophthalmologists are hard to come by in this area and according to her colleagues, this one has a great reputation. She’s a Junior and all it takes is for my doctor to say “but Dr. A says you don’t have MG”. That’s my fear. I know I should give him more credit, but experience and all that….
I do trust my Neuro and believe that he will help me get to the bottom of this. But I’m also a realist and ready to move to another Neuro if need be. As mentioned, I need to be my own advocate. I learned that lesson so long ago, but it does bear repeating so thank you for that 🙂
Paul
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Paul,
Hope you will find the help you so deserve. I’ve had MG since 2004. The journey is up and down. Some good days and months, some not so good. Currently, in a severe flare-up after getting my second covid 19 booster shot. Bad decision on my part since I had a minor flair-up after first booster but dismissed it. In terms of ptosis. I had been using “crutch glasses” for years. Don’t need them all the time but they are a life saver when eye droops get pretty serious. I’ve only found one place in California where on can get them custom made and they are not terribly expensive. Take care Paul, Fred
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There is a very simple test which was basically used without any blood tests to determine if one has MG or not. Mestinon. I had double vision, after oftalmologist examined me, she told me to see a neurologist, that one examined me and suggested just trying out Mestinon. I took 1/2 tablet and after 45 minutes my symptoms improved… later on a tymoma was found, but Mestinon is quick and safe way to check if one has MG. In hind sight I should have used a slightly higher dosage (1 x 60 mg pill), and now my regular dosage is 120 mg x 4 day. Some people may have gastrointestinal effects, so it is prudent to try out a smaller dose first, but to get full effect, 1-2 pills may be necessary. The action window of Mestinon is about 45 minutes to 3 hours; after that the effect fades quickly.
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I had my thymona removed due to cancer stage 3 in 2008 was diagnosed with the antibodies I never had a symptom until 2021 I slipped out of bed onto the floor and was paralyzed couldn’t move or yell for help it was a mgcrisis had plasma aphersis 10 – helped for 1 yr It hit me like a ton of bricks I thought it was COVID! So be careful
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I just got back from my Neuro’s office. We have a plan mapped out.
First is 2.5 mg of prednisone by 10:00 every morning until Christmas to see if it helps my vision. Probably won’t as I am no stranger to prednisone. Heck, I have bottles of it for when my RA flares up. I have never noticed a vision improvement, but the insurance company wants to see the progression, etc…
Second will be an MG drug to see what relief I get with that.
Third is a second opinion with a Neuro-Ophthalmologist at Mass General.
Since it will be a while before I can get an actual appointment, and the insurance company requires a progression of treatment, this works out well. I can’t say enough about my current Neuro. He talks things through and lays them out in easy analogies. I’ve been an Industrial Mechanic for over 40 years so I can be very critical and analytical. This doctor is the right one for me.
Paul
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Hi Paul –
Sounds like you may be making progress.
My double vision did not improve until I was taking 20mg of Prednisdone every morning. Was taking 20mg/day for a couple of years before I started to wean down to my present 10mg/day. Some take much more every day.
I also take 420 mg/day of Mestinon/Prostigmine and Imuran 3 times per day.
I guess I do not understand medication progression?
You did test positive for gMG antibodies?
Have you had an Electromyography (EMG)? What were the results?
Sounds like your new guy is taking the long way around the barn, but you do have a bunch of stuff going on.
Please keep us updated. Good luck.
Scott
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Ask for a trial of Mestinon (pyridostigmine). If that helps your symptoms it’s MG!
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PY did help my symptoms a LOT! BUT! I had to go to an Emergency room because I had terrible stomach pain, had an IV w/medication and was rehydrated. Called my Nero and was told to stop PY. OH well, next?
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Scott,
Your last post really stuck with me. You are right. Why am I waiting to take the long path here?? I have found another Neuro that specializes in MG. Ironically, he is at the Hospital I normally go to AND I saw him in 2018 for my poly-neuropathy. The down side is that my appointment isn’t until March 30th, but at least he is well versed in MG. I could get an appointment with another doctor two weeks sooner, but that one is in the Longwood section of Boston. I’ll wait the two extra weeks and stay in Burlington.
Thank you for your common-sense post, Scott!
Paul
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March is just a few months away – progress. Finding the right Neuro is so important.
Try to stay calm and unstressed. I know it’s difficult especially when in limbo.
If your symptoms get worse, you might consider going to the Emergency Room, where your Neuro has privileges, and see him sooner.
Scott
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So, it’s March 30th finally and I had my appointment with another Neuro today. I certainly left with mixed feelings. I will start by saying that I worked with a woman who had worked in a doctor’s office for 28 years. She said every Neurologist there had a God complex. I can kind of see that. This new doctor had a bit of an attitude when I mentioned that the Ophthalmologist (surgeon to boot) suggested I speak with a Neuro about MG.
My appointment was supposed to be with a doctor I had seen several years ago to determine the extent of the nerve damage in my limbs due to my spine issues. Well, it was with a different doctor and nowhere on her hospital bio sheet did it say MG. It’s like starting all over again. I explain everything for the umpteenth time to the umpteenth doctor all to hear ” your physical symptoms all look normal”
Yes, of course they do and for two reasons;
1: She’s a small framed female doctor and I’m 6′ 3″ and 246 pounds and a mechanic – when she tries to move my arms and can’t, it doesn’t mean I’m not losing strength.
2 I was there for double-vision issues primarily.
Enough ranting. I don’t want to focus on the negative side. It’s just frustrating starting with a new doctor. I’m sure I’m not telling anyone here something new.
So, the positive;
1: I am scheduled for an EMG for ocular and facial muscles in May.
2: The doctor’s office will set up an appointment for me to see another Neuro-Ophthalmologist, but this one will be at Tuft’s in Boston.
3: She did mention some MG drugs and asked if I had tried them. I said no, but will try anything to help identify and treat this issue.
4: At the appointment I noticed that while my double vision had always been vertical, today it was diagonal. I made sure to drive this point home. Also that when I look up as far as I can I no longer have double vision.
The irony of the vision issue is that I recently went back to work for Bausch and Lomb. I’m the lead maintenance mechanic for one of the facilities, where contact lenses start life. This job is much better for my body and health as it’s close to home and probably the best group of people I have ever worked with/for in my 42 years of doing this.
So that’s the “update”. I will continue to focus on the good things and stay healthy by walking at the reservoir behind my house.
Paul
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Hello, I have to agree! You have a positive antibody test for MG. Go to a different neurologist. One of them will get you started on a treatment plan.
best of luck
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I fear you have not connected with the right Doc yet. When is your nexp appointment? Is the new Neuro performing the tests her self?
The EMG test, I believe, is the determining factor, to many Neuros in diagnosing MG. My Neuro put me on Prednisdone and Mestinon before I had my EMG. Prednisdone, 20 mg/day solved my double vision for the most part. Others require more. I am still taking 10mg/day.
Good luck. Try to keep your stress and emotions under control.
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Good morning, Paul
Electrodiagnostic medicine is the study of the diseases of nerves and muscles. If you have been referred to our clinic, your doctor has recommended an EMG test to see if your muscles and nerves are functioning normally. The results of the tests will help your doctor decide what is wrong and how it can be treated.
Doctors who do EMG testing have completed special training, and work either as Physiatrists (CAPMR). The doctor who completes your test should be certified either by the CSCN (Canadian Society of Clinical Neurophysiologists) or the AANEM (American Association of Neuromuscular and Electrodiagnostic Medicine).
Most patients coming for nerve testing will have nerve conduction studies (NCS). Many patients will have a second part of the testing called electromyography (EMG).
Was the blood work done called an Acetylcholine receptor antibody titre anti-MUSK?
I too might suggest seeking another opinion of a neurologist, but see if you can ask for one who might specialize in Myasthenia Gravis.
I have had Myasthenia gravis for 45 years now. I go back to when there was no tests available. I was treated and diagnosed based on a Clinical Diagnosis and thank goodness was immediately given Mestinon and to this day I continue taking ONLY Mestinon. What is wonderful to see now are the more advanced tests and treatments that are being explored so there is so many options. As with many neuromusculars, it can be frustrating to come to a proper diagnosis.
Hope this helps.
Anita
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Thank you for the explanation, Anita! I have had several EMGs in the past due to spinal issues. Could you explain in more detail about how they perform this test for the ocular and facial muscles? The Neuro told me it will hurt and I don’t doubt that.
One thing I have been noticing lately is that my double vision is most of the time, but different at times. For example, it used to be vertical only. Last week at the doctor’s office I noticed that the image in the right eye was now up and to the left. Today it was down and to the right. When eye look up as far as I can with just my eyes, there’s no double vision. Same as to the far left and right.
Paul
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Thank you for the explanation.
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Paul,
It sounds like you have the same Neuro that I do! Same symptoms and I am positive for AChR Binding and Blocking as well as Modulating. If you haven’t taken the blood test for these you need to. As soon as the tests came back my Neuro put me on Mestinon (Pyrodostomine) and later on Cellcept. The Mestinon stopped my double vision almost immediately. He referred me to a specialist Neuro for MG and she put me on Prednisone and ramped me up to 60mg on it. That caused me to become diabetic Type II. As soon as that happened, she ramped me down to no Prednisone and that is when I went on Cellcept. I’ve been on both since spring of 2019 and am stable. I don’t get much from my Neuro now, no blood tests or infusions.  He doesn’t explain much now that I am stable and I haven’t seen him for over a year. I’ve tried to get another referral (the first one quit her practice for a sabbatical) and although I was promised (more than once) a year ago he would do so it hasn’t happened.
The blood test I mentioned shows “Approximately 85-90 percent of patients with MG express antibodies to the acetylchloline receptor (AChR), which can be divided into binding, blocking, and modulating antibodies…..”
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Hi Paul –
Test procedure – https://myasthenia-gravis.com/clinical/emg-testing
They do test the eye test numerous times to determine muscle recovery time.  It was not pleasant but it was a necessary test for my doc to make my MG diagnosis. My previous blood test showed AChR Positive.
For me, DV changes from day to day, from time to time. Mine affected the 4th nerve in my left eye and was diagnosed as 4th nerve palsey. These nerves are quite delicate and are some of the first nerves to be effected by MG.
Scott
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Hey Paul,
I’m late to this thread. My MG specialist is at Mass General, Neuro-Muscular Services. They have been treating me for three years. Mestinon and Cellcept. You live near Boston. See if you can see them if you are still having issues.
My Primary care doc diagnosed me in one visit, ordered blood work to confirm and referred me to MGH. I live 75 miles away. I feel fortunate reading your initial experiences.
I hope you have success and wish you the best.
John
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Hi, Paul –
Of course you should get competent doctors. I also want to encourage anyone on prednisone to take lots if collagen in their food to counteract pred’s side effect of weakening bone density.. Collagen is good for everyone. I load my very healthy smoothies with pure powder collagen every day and my bone density scans have shown improvement in the last 2 years. I’m 74 years of age, so my bones are supposed to get less dense.
Best wishes, Wayne
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Time for an update. Please bear with me as this will most likely be a long post.
I had been seeing a Neurologist outside of Lahey that wasn’t exactly sure what to do so he sent me to a Neuro-opthalmolgist, as my newly appointed Neuro at Lahey wanted, too. I saw the Neuro-Optho for a few visits and he noticed that my eyes were looking in slightly different directions, as did one of the Ophthalmologists did at Lahey a few years back. He decided to try prisms in glasses for me which made matters much worse.
During this time I needed to go to primary care for a checkup. I was appointed a new resident doctor who was so thorough that I became his first regular patient. He had some very good suggestions and listened well. He wanted me to go back to see the Neuro at Lahey. I agreed. My Rheumatologist suggested I should see a Neuro that specializes in neuro-muscular problems. As luck would have it, this Neuro is one of two at Lahey that does!
Fast forward to last Friday. I go see her and explain that I couldn’t see the Doctor at Tufts that she recommended as nobody would return my calls. I brought the notes from the other Nuero-Optho that I saw. I also brought my wife with me for support and to mention things that I’d forget. They both noticed that my left eye was different and both eyes were more swollen than normal. She also asked me if I have trouble swallowing (yes) and if my voice gets tired when I speak, also yes, and just two days before, ironically. While she still doesn’t think it’s MG she decided to give me a prescription for Mestinon to see if it makes a difference. Well, it does! The double vision doesn’t go away completely while on Mestinon, but I would say 80% of it does. My eyes are also open much more! My wife thought something was wrong with me as they haven’t been this open in many years. The other thing is that before if I forced my eye to open this much the double vision got worse. I would have to really squint to focus. Now the vision is much better with my eyes open.
While I am very excited to have a good portion of my vision back, the enthusiasm is tempered with the reality of MG. I’m assuming the doctor will diagnose Ocular MG based on the results with Mestinon. Or is that a bad assumption to make? I never realized how awesome the desktop on my Mac looked until yesterday! Sorry, sidetracked there. I already have an autoimmune disease, sero-negative arthritis (enteropathic arthritis, due to UC and then a total colectomy). The doctor did mention that if this worked we would have to work with all my doctors to determine the right mix of meds as I’m already on immunosuppressants – Rinvoq.
At any rate, I’ll take the enthusiasm of being able to see much better! Thoughts?
Paul
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I had all the symptoms you mention I have all of them and definitely have mg. Ended up in hospital 16 days with mg crisis I would def find another neurologist needed plasma aphersis helped for 1 yr. And be careful wat meds you’re on esp antibiotics can make mg worse happened to me!
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60 mg Pydidostigmine 3xs a day made me walk without falling but there were side affects that made me drop back to 30mg 3x a day.
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MY MG was finally diagnosed and treated on March 24, 2020 and i am still currently in REMISSION. I belong to 4 MG SUPPORT groups and ZOOM also with ones in ATLANTA and in SOUTH CALIFORNIA. They say that to stay alive … YOU NEED TO BE YOUR OWN HEALTH QUARTERBACK. All the MG support groups have been WONDERFUL, and every monitor of each MG group knows by our discussions and groups … which doctors are MG sauvy … and which are MG CLUELESS DOCTORS .. who don’t even know what MG means in ENGLISH. Find a MG SUPPORT Group in your area, or anywhere in the world, and they know the GREAT NEUROLOGISTS and the LOSERS … and they have feelers out to other MG groups that can get the name of a TALENTED NEUROLOGIST … that is willing to give you THYMUS Xrays and the three AChR ANTIBODY TESTS for binding, blocking, and modulating. It does not matter WHERE you live … MG people know people who know people.
I ZOOM with East PHOENIX, West PHOENIX, CAlifornia, ATLANTA, Minneapolis and LONDON (check out their ENGLISH MG WEBSITE … http://WWW.MYAWARE.ORG) The MYAWARE.ORG website has lots of MG information sheets that you can print out and download and give to your doctors and any PARAMEDICS, 911 crews, DENTISTS, EMERGENCY ROOM TEAMS, and especially ANESTHESIA PROVIDERS.
I had a CODE RED at the first of five hospitals. They could not diagnose my MG SYMPTOMS … so they decided to sedated me with ROCURONIUM and PROPOFOL, for MRI scans. It was a drug overdose of anesthesia, and my breathing was already suppressed. So the additional sedation did me in. ACUTE HYPERCAPNIC RESPIRATORY FAILURE due to AN OVERDOSE OF ANESTHESIA … when I was found not breathing and unresponsive in POST ANESTHESIA PATIENT CARE. So gather as much information, handouts, and doctor referrals as you can and BE SAFE !!!
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My VA doctor took an MRI of my Thymus and said “the spots on my Thymus were too small to be MG”.
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Good day Sir, I am the wife of a Veteran who has MG. He started with double visionn, a flareup then lost the ability to speak now his good eye is not moving to get the vision he needs. We went almost 3 years before they said MG they were giving him Thyroid eye problem it was not we went to 3 Neuro I suggest you get an eye doctor that handles MG and a Neuro that will listen to you this MG is very stressful and makes things worse when you are stressed there are many reasons you are going thru different situations and you need someone that can explain that just eating tires you and your body is fighting all the natural things you are used to. I will keep you in my prayers
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Never give up! My Nero said MG is treatable. AO could be the cause, check with a VSO. I use the American Leigon but not all VSO are the same.
Vietnam AO??? Fuels on a flightline (Nam)will cause Deseases also.
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Paul
If you tested positive for anti bodies you have MG. tell your doctor he a nonce and get a second opinion
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Get a new Neurologist! Can`t PCP recommend someone?
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