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Hello to everyone!
My name is Paul and I have been going through a lot health-wise lately. I have inflammatory arthritis and am on Rinvoq for it. The reason for my post is that I would like some input as I don’t feel as my PCP and Neurologist are listening to me. For the past several years I have had double vision that gets worse throughout the day, but eases up after I get home. I have also had eyelids that are nearly closed, so much so that my friend asked me if I was Asian, I am not. Over the past six months I have developed fatigue, exhausting early, getting weak legs from just walking, shortness of breath even while sitting , the occasional choking on beverages while trying to swallow and tripping over my tongue while talking.
The Neurologist did a blood test for MG and it came back that I was positive for the antibodies. He said I don’t have MG and told me to work with my PCP. My PCP says he defers to the Neuro and he said I’m fine. Any input is welcome. I just want to find out what is going on so I can treat it and get back to living my life.
Paul
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I would also like to add some other things for context.
I have been experiencing hand tremors. They are worse when I hold a pen or mug, but stop if I squeeze my muscles. I get inner tremors through my whole upper body where it feels as though I’m shivering, but I’m not.
My PCP was supposed to refer me to a cardiologist as I get light headed often and when I sleep on my side my heart is beating as fast as it can possibly go, so much so that my body feels like it’s vibrating. The PCP wanted to get the other issue figured out before he sends me to a cardiologist. At this point I’m giving serious thought to seeing my old PCP whom moved to New Hampshire (I’m in Massachusetts). I am also going to speak with the Endocrinologist and Rheumatologist when I see each of them next month.
Paul
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Paul,
sorry that you have been unable to have your neurologist properly treat you, my suggestion is find another neurologist, if the anti body test came back positive and your current neurologist did nothing, dump him and find another neurologist
good luck and stay positive help is out there for you
Philio
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Hi Paul
I live in New Zealand down the bottom of the globe.I would have thought Americans neurologists would have been up to date with Myathena Gravis. We are a very small country 5 million now. But I was diagnosed with this disease with 4 days. My Dr thought I may have had a stroke behind my eye. Was sent in immediately to our main hospital here in Christchurch. Had MRI and other tests. They came back with Myasthenia gravis straight away. So I am extremely lucky. I first got it last year when I was 76. And it came back a month ago. Was down to 3mg predisone and Pryndostigmine. Now i am back to 20mg Pred and 360mg of Pyridostigmine.
hope you are copping with this very unusual disease.
lynette
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Are you close to any University Hospitals? Any good Neuro with gMG experience might be found there. If you were to contact the Hospital they might give you a list of gMG Neuro Specialists. Is there a local gMG group? Sometimes there are local meetings……
You have lots of stuff going on.
Look for a Neurologist that specializes in MG.
I feel your pain, 🙂
Scott
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Good info Scott! I’m just outside of Boston so there are a lot of good hospitals. I have a brain MRI scheduled this Saturday. I think my first step is a new PCP. When I messaged my current PCP about depression he told me to go to psychologytoday.com and look for a doctor. Not an acceptable response. Once I do switch PCPs I will find a new Neuro. I am also going to reach out to my old PCP, whom I trust, and ask if he can recommend a PCP and Neuro.
I do have a lot going on. I have a total colectomy, lumbar spinal fusion and total knee replacement. Well, off to work!
Paul
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Paul
You have a sad tale and a menu of issues that read like a textbook description of myasthenia gravis symptoms: ptosis, weakness, trouble swallowing, double vision, a blood test that came back positive for MG antibodies. I am not sure how any physician could not agree with you that MG seems to be a logical starting point. (And may turn out to be a logical ending point.) Your PCP may have concluded that you are “fine”, but it seems clear you are not. You live in an area blessed with the top medical experts and resources in the country. I would look at Tufts, Mass General, Beth Israel, Brigham and Women’s — any of their affiliated physicians have massive resources available to them. If you are on the other side of Boston, closer to Worcester, you can call the UMass Medical System. Any physician associated with these huge medical organizations has access to almost unlimited medical experts and resources. Let’s hope you “click” with someone you can relate to. Good luck. -
Hi Paul!
I’m so sorry you’ve had to go through all of this. Everyone has already given you great advice, but I also wanted to provide a link to a list of MDA Care Centers. You can search by state and find out which hospitals specialize in these types of diseases. My neurologist works with a care center and she’s fantastic.
Good luck and keep us updated!
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Thank you for the input, Tom and Michelle!
Tom, I go to Lahey, which has merged with Beth Israel. I am trying to stay outside of the BILH world for the rest of my journey on this, after my brain MRI in two hours. I have found a new PCP and identified a good Neuro local to me that I will reach out to. My first task is today’s MRI. My second is a visit with the new PCP and get her thoughts. Then the new Neuro. At the same time I am seeing an Endocrinologist for my hormone treatment and I will ask to have my thyroid tested as a lot of the symptoms are similar between thyroid and MG. Also, my mother had her thyroid removed back in the early 70’s.
Edit: I have noticed that I feel worse in the heat. For example, my legs turn to jello quickly when I walk, but today and Thursday were cool and walking wasn’t bad at all until near the end of my walk. Similarly, I was in a hot room at work the other day standing and wanted to pass out I was so light headed.
I appreciate all the support very much!!! One last question; I have read that if you have the antibodies in your blood then you are positive for MG. The amount doesn’t dictate the severity. Is this true?
Happy Saturday everyone!
Paul
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Paul, I agree with the others that you sound like you have MG. (Welcome to the club that none of us ever wanted to join.) Unfortunately, not all neurologists really know about MG. I’d recommend checking the Myasthenia Gravis Foundation of America website (myasthenia.org) for great information about living with MG (they’ll send a free new patient kit to you) and check their online search for neurologist who specialize in MG in your area! It’s a wonderful sourse!!
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I have an appointment with a new Neuro on Tuesday! Also, the muscles around my eyes have been twitching for several months and getting worse. Is this part of MG? It’s also important to note that the symptoms for MG and thyroid issues are similar. I mention this because my mother had her thyroid removed in the early 1970s. I am seeing an Endocrinologist in October as they have been filling my prescription for testosterone.
Paul
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Hi Paul –
My eye muscles also twitch on occasion usually when getting fatigued. There are 4 muscles that control each eye. Up, Down, Left and Right. The muscles are small and sensitive. Double Vision is caused when one or more of your eye muscles do not get appropriate stimulation from it’s nerve. I also get some muscle twitching between my left thumb and hand.
I was once diagnosed with a micro stroke. 4th nerve palsy causing Double Vision. I was also diagnosed with a severe Sinus Infection that caused my double vision. This sinus diagnosis was made even though I had no sinus blockage or pressure in the cavities. Many times the Drs. just don’t know. That is why it’s so important that your Neuro is fluent in/with gMG.
Sounds like you are making progress.
Good luck,
Scott
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For the eyelid droop, I had my eye doctor prescribe Upneeq which gives me about 6 hours of open eyes. They need to call into RVL pharmacy and have it shipped. Insurance will not cover it because it is considered cosmetic. My blurred vision and double vision goes away when my eye lids are lifted above my pupils, which happens with the eye drops.
I don’t understand how a positive blood test means no MG. I have negative blood test and the neurologist says that it is probably zero-negative MG. I agree with all the others to find a new MD that specializes in MG
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Sorry bud but you seriously need to get a second or third opinion, I’m 62 and have had full blown MG for over a year now with mostly the exact symptoms that you are experiencing… Took 3 months, several doctors and test to narrow mine down to MG… Best of luck finding the right doctor to narrow it down to MG or some of the similar type of diseases related so they can get you on the right medications to ease your symptoms…
Mark
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“If it looks like a duck, swims like a duck, and quacks like a duck, then it probably is a duck. Sure sounds to me like it’s MG. You are correct that the antibody level cannot be used to determine the absence or severity of MG, because of the incredibly dynamic interaction between the antibodies and the NMJs.
I continue to have a huge question over any possible correlation between the nicotinic acetylcholine receptor antibodies that is a hallmark of MG and the possibility that there could also be antibodies to muscarinic acetylcholine receptors that are used in the autonomic nervous system, which could potentially be a significant cause for dysautonomia symptoms. The autonomic nervous system is in charge of cardio, gastro, pulmonary and other body systems.
I also believe that auto-antibody mediated autoimmune diseases should be viewed as a spectrum disease, where symptoms depend on the particular auto-antibody the immune system has mistakenly started generating. In fact, many treatments for different AI diseases are remarkably similar. Daughter has drastically improved undiagnosed symptoms unrelated to her MG diagnosis (like gastroparesis) once she started getting some real MG treatment.
Energy, particularly glucose, is needed to manufacture auto-antibodies. When the immune system has gone on the warpath attacking the body with auto-antibodies, it’s guzzling glucose, and I suspect depriving the brain and body of glucose, hence fatigue may be a direct correlation of how active an immune attack may be.
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“If it looks like a duck, swims like a duck, and quacks like a duck, then it probably is a duck. ”
Jane is correct.
You have MG. If you have a positive antibody test, it is a no brainer.
You have all the symptoms. You can’t have a false positive test. You can possibly have a positive test and not happen to be symptomatic. You can have a negative test and still have it. MG is diagnosed by the symptoms.
Time to trade neurologists. I went through 5 before I found someone who is an expert of neuromuscular junction disorders. She is at Emory University Hospital in Atlanta.
The small town docs didn’t cut it.
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Those of us with MG are told that we often have, or eventually develop, another immune related disease, e.g., RA, among others. See another Myasthenia Gravis literate (and experienced) neurologist. The MGFA has a list of such physicians across the country. You want a treating neurologist who is highly familiar with the disease (often called the “snowflake disease” because of the great variability in presentation from patients. Wishing you the best answers to your concerns, questions, and medical needs.
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Paul,
I am not a doctor, but I’ve done enough research about MG that it sounds to me like you have many of the symptoms.
I began having symptoms in late 2020. It took me a year to find a good doctor. I happened to have a chest x-ray and it showed a nodule in the center chest area. It turned out that it was a thymoma which is one thing that can cause MG.
I hope that you will keep searching to find the right neurologist for you. It may take many, many tries, but when you find the right one, like I did, I believe you will just know it. You will feel heard and taken seriously. The feeling when I found the right doctors was really pronounced!
My best wishes to you on your journey!
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Hey,
I have gone through the same symptoms three years back and went to even crisis needing ventilator and IN ICU TReatment for about four weeks.Your symptoms and result of ur Achrvtest suggests that it’s MG .You must find a another neurologist who can think in differently than ur present one.
All best renain in high spirits and be positive
Gulshannduggal
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I saw 5 Neuros/Neuromuscular doctors and several hospitals before settling in very happily with Dr. Amanda Guidon and her MG clinic which includes and infusion suite. She is my all time favorite doctor. And MGB my favorite hospital. They have plasmapheresis available, which is rare. Here is the MGFA list of providers:https://myasthenia.org/Physician-Referral-List/state/MA
There is a New England Facebook group : MGFA New England Support Group. Dr. Guidon spoke on the last virtual meeting.
Hope your new doctors work out for you and you get the treatment you need.
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I have an update. It’s good news, good news, bad news.
Good news #1: I found a great Neuro local to me. He’s actually the doctor that diagnosed my sister with MS over 40 years ago. Not planned, but big co-incidence!
Good news #2: He explained everything in terms I can understand. Most importantly he explained how the MG test was done and I don’t have it!
Bad news: I am severely copper deficient. This is very rare so treatment is going to be different, to say the least. it was right there in my blood test results like a big fat meatball, yet neither my old Neuro, nor my old PCP, noticed it.
I am happy to find what the problem is. It takes a lot of stress off of me. Now the long road of figuring out how to correct it. There are a lot of similarities in symptoms between this and MG. The double vision is a separate issue we need to address, but I’m confident that this Neurologist of over 55 years in practice will see it through (pun intended!)
Thank you everyone for you support!
Paul
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Well, not so good, David. I have seen a new Doctor in the Endocrinology department. He had some lab work done on me and I’m deficient in Vitamin D and testosterone, even though I have been taking both. So far I have added chelated copper (copper deficiency), vitamin D twice a day, testosterone twice a day and thyroid support supplement twice a day. I also get B12 shots monthly due to malabsorption issue from no colon.
I do feel a bit better, but still have tremors when excited, anxious or stressed. For example, I lose some muscle control in my hand/arm while playing Mahjong and trying to beat the computer. I also lose it when I cook and add spices, sometimes my hand just shakes uncontrollably and I over-season. I still get the internal tremors where I feel like I’m shivering, but I’m not cold. My vision is getting worse, too. Blurry and double vision. I had an appointment last week with one of the top ophthalmologists at Lahey. I told her about the double vision and that I can make the images move around by rotating my head. Also that if I look all the way up with my eyes only that the double vision goes away. She asked me if I have trouble swallowing, which I do about once a week. She asked if I get shortness of breath and I told her I do, and ironically I had lost my breath just sitting at my desk that very day. She then told me to go back to my preferred Neurologist and have another discussion about MG.
This is the third doctor that has brought up MG. I am going to see the Neuro on December 5th. At this point, I just want a solution and to plan a path going forward. The malabsorption issues tend to muddy the diagnosis. I was happy to get the diagnosis on copper deficiency as that would have meant I could move forward with life. This last doctor telling me to re-open this possibility with the Neuro was a bit of a punch in the gut.
I am no stranger to the emotional roller coaster of health issues as I went through it for many years with my spine and then again with 13 surgeries for my intestines, including a total colectomy. It just doesn’t get any easier going on that ride. I think one of the main reasons I’m feeling somewhat better is that the summer heat is gone.
Thank you all for your support in this. It means a lot to me to be able to communicate with others that get what I’m experiencing.
Paul
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Sorry you are having these issues. Tested positive for antibodies, displaying many of the sympotoms – YOU need another neurologist. I exhibited many of the same symptoms (eyelids, muscle weakness, etc) and once on a regimen that started with IVIG – Intravenous immunoglobulin) and high doses of prednisone, mestinon and mycophenolate, I am now living my best life with 4 ~ 60 mg tabs of mycophenolate, 2.5 mg of prednisone and 4 ~ 60 mg tabs of mestinon. YOU need a neurologist who can treat you, not just tell you you have it. GOOD LUCK
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Hi Paul –
Thanks for the update.
The road to diagnosis and treatment can be terribly frustrating.
Your symptoms are very much like mine.
It is good to hear that you have an upcoming appt. with a “Good” neurologist.
Try to stay calm and keep your emotions and stress level low.
My symptoms, tremors and double vision, get much worse as my emotional and stress levels increase.
Perhaps your PCP might prescribe something to ease anxiety and lower stress. Mine has prescribed Hydroxyzine. I usually have small hand tremors and double vision but when they get worse, usually under physical or emotional stress, I take one or two Hydroxyzine and that calms me down and decreases the tremors.
Scott
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Thanks, Scott!
Your post definitely helps me to feel a bit better. Most of the time I feel like the problem is me because nobody understand, except my sister with MS. My wife is very supportive, but sometimes I feel as though I’m alone in this “journey” Not a negative reflection of her, it’s just that we’ve been through so much together with my health over the years. Hearing the reassurance of people that are in, or have gone through, the same thing is validation of sorts. Even though I am not getting my thoughts out as precisely as I would like, I believe you understand what I mean 🙂
Paul
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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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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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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 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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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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