Hey all!

[Paul P Ellsworth]

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

[Philip Callas]

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

[Tracy O’Connor-McGraw]

I agree with Phillip , find a Neurologist that specializes in MG . We travel to Duke University NC to see a doctor there …..it’s so important to have a specialized doctor . Best of luck .

[Lynette Wilson]

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

[paul spychalski]

I’ve been going thru the things that are posted here. For years my Doc was saying I had Vertigo, WRONG! My VA Ophthalmologist tried to help but the VA gave me a Generic Mestinon, that did not work, so they said I didn’t have MG. I went to a Nuro on my own and gave me Pyridostigmine and it was working, felt great not to “have” to use a cane but as the dose was increased I dad a lot of bloating and soft stool. He said to take a (strong)Probiotic. That helped some but started having pain issues, my head, neck, etc.so I started back on the smaller dose, now I wait 2 weeks to see him. Till the next time…..

[paul spychalski]

Does the Pred.. hurt your stomach? It does mine. What do you take for that?
TIA

[David S]

You might consider getting a second opinion.  Hopefully with a Neuro that knows about MG.

[Paul P Ellsworth]

David,

 

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.

[paul spychalski]

I started doing that and he is helping. The VA was giving me a Generic of Mestinon and was no working, the new Nero. put me on Pyridostigmine and I started walking sometimes w/out a cane or walker. I have HIGH HOPES!

[paul spychalski]

I did.

[David S]

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

 

[paul spychalski]

Thanks, I found a MG Neuro.

[Paul P Ellsworth]

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

[paul spychalski]

I’m going for more Lumbar shots next week. The last one only lasted 6mo.

[Tom A]

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.

[BioNews Staff]

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!

[paul spychalski]

Thanks.

[Paul P Ellsworth]

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

[David S]

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 –

Scott

[Kent Estes]

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.

[Barbara E.]

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!!

[Paul P Ellsworth]

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

[David S]

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

 

 

[Mary]

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

[Mark Cox]

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

[Roy Terwilliger]

If you are in Mass., contact the Neurology Dept, at St. Elizabeth’s Hospital in Boston.  They are experts in MG.  Roy

[Jane DeLisle]

“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.

[Celeste M Matthews]

“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.

[Andy Coyne]

Resperitory is not under the control of the autonomic system. If you can control something is the sympathetic nervous system.

[Andy Coyne]

Resperitory is not under the control of the autonomic system. If you can control something is the sympathetic nervous system.

muscarinic MG is known as MUSK – muscle specific kinase MG.

A positive test is a positive test for achr MG. Level is not necessarily indicative of severity. I know people with a level of 6 mmol (uk measure +5 is positive) with severe MG. Mine is 242 with largely ocular symptoms with some generalised fatigue and breathlessness.

 

[Jane DeLisle]

I respectfully disagree.  Receptor tyrosine kinase protein MuSK is a signaling protein involved in the development of the neuromuscular junction, which is also held in place by rapsyn.  Antibodies to this protein interfere with the NMJ and cause MG symptoms.

Muscarinic acetylcholine receptors, or mAChRs, are acetylcholine receptors that form G protein-coupled receptor complexes in the cell membranes of certain neurons and other cells. They play several roles, including acting as the main end-receptor stimulated by acetylcholine released from postganglionic fibers in the parasympathetic nervous system.  Muscarinic receptors are so named because they are more sensitive to muscarine than to nicotine.  Their counterparts are nicotinic acetylcholine receptors (nAChRs), receptor ion channels.

So MuSK and mAChR are two totally different proteins.  Antibodies to mAChR may not cause problems with muscle NMJs to contribute to MG, but I strongly suspect they can cause havoc with various organs controlled by the autonomic nervous system, giving rise to many odd symptoms that stump doctors.

Thus drugs that affect the transmission of acetylcholine in the NMJ and help with MG symptoms might also improve non-MG symptoms that might be appearing in the autonomic nervous system, such as gastroparesis in the digestive system.  Those not affected with gastroparesis might find pyridostigmine causes digestive upset, but my daughter who had gastroparesis discovered her gut started moving again and acting more normally once she started on pyridostigmine, which implies something going on with the mAChR related to her nAChR antibodies and acetylcholine transmission.

The lungs seems to be a hybrid between the autonomic nervous system (parasympathetic – rest and digest, sympathetic – fight or flight, and enteric) and the central nervous system (conscious control).  During the day, many muscles are involved with breathing, and can be consciously controlled but for the most part we don’t think about or notice breathing, but at night, when we fall asleep, the only muscle that stays awake is the diaphragm, when all other muscles enter a sleep based paralyzation.  Thus MG antibodies that attack some lung muscles might not be making a noticeable difference during the day, but can cause difficulty breathing during sleep at night, necessitating the need for a BiPAP machine.

[Carol Lawson]

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.

 

[Michelle]

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!

[Gulshan K Duggal]

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

[Marguerite Thibeau]

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.

 

[Paul P Ellsworth]

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

[David S]

Sooooo – How are you doing these days?

[Paul P Ellsworth]

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

[Kenneth Berg]

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

 

[David S]

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

 

[Paul P Ellsworth]

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