September 10, 2022 at 8:48 pm #19931
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.
September 10, 2022 at 9:17 pm #19932
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.
September 21, 2022 at 8:29 pm #19997Philip CallasParticipant
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
September 11, 2022 at 2:36 am #19935
You might consider getting a second opinion. Hopefully with a Neuro that knows about MG.
September 11, 2022 at 6:13 pm #19938
I may go see my sister’s Neurologist. She’s been treating her MS for decades. If she’s not in my Insurance carrier list I will see another local Doctor that is in the plan, but not in the same hospital.
September 13, 2022 at 1:53 am #19940
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, 🙂
September 13, 2022 at 12:55 pm #19942
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!
September 15, 2022 at 12:14 am #19957Tom AParticipant
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.
September 15, 2022 at 11:02 pm #19971Michelle GonzabaModerator
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!
September 17, 2022 at 5:16 pm #19982
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!
- This reply was modified 1 week, 2 days ago by Paul P Ellsworth.
September 18, 2022 at 2:19 am #19987
Heat is not a friend to gMGers. No hot tubs for me and the shower temp is a bit cooler.
Sounds like you got some great resources and have a plan. I hope your new Neuro is familiar with this disorder. Have you had an opportunity to check his specialties?
Take care –
September 19, 2022 at 1:33 pm #19980Kent EstesParticipant
Paul, I’m sorry you are not receiving the care you need and deserve. My advice is head to Mayo Clinic. You can self refer (no doctor’s referral needed.) Don’t accept a diagnosis (or lack of) that you don’t have confidence in.
September 19, 2022 at 1:33 pm #19981Barbara E.Participant
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!!
September 22, 2022 at 7:42 pm #20007
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.
September 22, 2022 at 8:07 pm #20008
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.
September 22, 2022 at 10:18 pm #20010MaryParticipant
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
September 23, 2022 at 7:28 pm #20013Mark CoxParticipant
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…
September 23, 2022 at 7:52 pm #20014Roy TerwilligerParticipant
If you are in Mass., contact the Neurology Dept, at St. Elizabeth’s Hospital in Boston. They are experts in MG. Roy
September 23, 2022 at 9:35 pm #20017Jane DeLisleParticipant
“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.
September 23, 2022 at 10:05 pm #20020Celeste M MatthewsParticipant
“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.
September 23, 2022 at 9:49 pm #20019Carol LawsonParticipant
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.
September 24, 2022 at 1:40 am #20021MichelleParticipant
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!
September 26, 2022 at 12:23 pm #20023Gulshan K DuggalParticipant
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
September 26, 2022 at 12:23 pm #20028Marguerite ThibeauParticipant
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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