Hey all!

[MG Community Member]

Hi Paul,

I live in NH and get my care at MGH neuro muscular clinic

I seeDrAmanda Guidon who is wonderful

Best to get care at medical centers

Good luck!

[MG Community Member]

Thank you.

[MG Community Member]

I truly appreciate the responses, but my last reply to this thread (a few days ago) is about 10 to 12 posts up and explains that I found a good Doctor and got a diagnosis and am on a treatment path. Thank you,

Paul

[MG Community Member]

Congrats!

[MG Community Member]

I just want to say that anyone taking prednisone should tk collagen supplements. I have been taking a lot of prednisone for long. I had a bone density scan a couple years ago and another a couple months ago. Prednisone weakens bone density. So does getting older. My bone density has improved because of the collagen, glue of life. In fact, everyone should have plenty of collagen, which I put in my super charged smoothies.

Best wishes folks, Wayne

[MG Community Member]

Thank you for the tip, Wayne! My Rheumatologist had me on prednisone for over a year about five years ago, but it was only around 5mg daily. I will add some collagen to my diet. I believe I have powdered bone broth that I intended to use in recipes……

Paul

[MG Community Member]

You’re very welcome, Paul. Best wishes, Wayne

[MG Community Member]

Paul. Regarding your double vision issues. BTW this is for anyone else reading who suffers from double vision. Make an appointment with an ophthalmologist. Discuss your MG disease and then ask about putting a prism i to your eyeglasses. If you do not wear eyeglasses then the can put a prism I to clear glass in eyeglasses. The prism is a gamechanger. It immediately corre ted the double vision. Now you probably will get it again when you take your glasses off but I’ve learned to watch TV in bed on a double screen. Please look into prisms. They changed my life.

[MG Community Member]

Thanks. I’m going to see a Neurologist that specializes in Ocular MG. I’ll post what happens.

[MG Community Member]

I have to agree that you are seeing the wrong neurologist. I was referred to an opthalmic neurologist after my blood work came back negative. The first never conduction test was positive but then the single fiber nerve conduction was negative for MG. The test that the eye doctor did and said confirmed that I have occular MG is to hold eye packs on the eyes for 5 minutes. It opens the eyes for a few minutes, and then they droop again. She said she has seen negative blood work and negative single fiber test in some cases. I was prescribed Upneeq, but it is very expensive, and over time, it doesn’t work as well. I had eye lift surgery, and that helped but then as predicted my right eye started to droop. I was put on high-dose steroids, which helped, but then I had problems and had to go off. The strangest thing that helped was when I went on Ozempic for weight loss. Not only did my eyes open up, but my depression disappeared. My metabolic psychiatrist says that the GLP-1 drugs do seem to have positive neurological effects. When I had to stop Ozempic for surgery for a few weeks, my right eye began to droop again. I am seeing a new neurology resident, and she had me look up and hold my gaze for over a minute–she saw that my right eye pulls down after a minute, which she said confirmed Occular MG. I am just hoping that it does not progress to general MG, as I was told happens in the majority of cases.

[MG Community Member]

find a neurologist that specializes in MG. Many are located in University teaching hospitals. I was sent to the University of Miami (FL) to see an excellent specialist. I was lucky that the head of neurology in the hospital I went to when I had my original crisis was a MG specialist and he diagnosed me tight away.

[MG Community Member]

The URL for the MG Wallet Card is

https://myastheniagravis.org/wp-content/uploads/2024/04/ConquerMG_WalletCard_Download.pdf

[MG Community Member]

Hey Paul, I’d have to concur with most comments on finding a better neurologist that is experienced with MG… Nothing worse than a physician that doesn’t understand our gMG conditions… We all have plenty of experience explaining mg to all our other doctors, don’t need any more experience explaining it to a so called medical professional…

You mentioned trembling in hands and body… I experienced the same trembling on what I thought was my last MG medications before going back on VyVgart again recently… So I went to the Mayo center in Phoenix AZ, not what I hoped but did find a great neurologist doctor there… As I mentioned, I thought the trembling was from the last infusion meds and she quickly said probably not and it was most likely not from MG nor the previous infusion and more closer to a diabetic related condition…

Turns out after blood tests and a boarder line diabetic diagnosis of 6.2… She asked me to lose some weight, eat right and try beat the diabetes first.. That was about 45 days ago and have had no trembling experiences since and close to loosing 20 lbs now… I’ll go back for another diabetes test in a month and if the score goes down and there’s no more symptoms of trembling, I’ll get back to the group…

One more important thing that she mentioned to me is that MG / gMG sometimes exacerbates many of our other conditions in our bodies making them more noticeable and sometimes more painful… She felt that my trembling was from my gMG exacerbating or bringing to light my borderline diabetes issues and I was feeling it through the trembles in my body along with sometimes faintness or confusion…

So far, so good following her instructions …

Best of Luck on your journey…

[MG Community Member]

Good luck. My doctors are now testing for Ataxia.I have symptoms of both. My Pyridostigmine is not working as well now. ?????

Frustrating!

[MG Community Member]

Sorry to come so late to your party, BUT if a blood test indicates you have MG, then you have MG. But if a blood test does NOT indicate that you have MG, then maybe you do and maybe you don’t have it. Blood tests can confirm the disease but cannot rule it out. I was experiencing double vision and my opthalmologist ran the first sort of test for MG; I seemed normal. Something like 10% of people with MG (and remember that MG is a very rare disease, perhaps 37 cases in every 100,000 persons) have triple sero-negative generalized Myasthenia gravis. If these estimates are factual, fewer than 4 out of every 100,000 people have this disease. I had all the symptoms but lacked the diagnosis until Easter 2024 when I suffered what was thought to be a stroke; in women over 75, an MG-crisis often presents as a stroke. I had the great good fortune to have a pcp who cared enough to review the hospital’s reports and listen to my own complaints and then refer me to a neurologist who seems to know what she is doing. She ran an additional test for MuSK-type MG and I didn’t show up as affected in that test either.

I am triple sero-negative. As such, many treatments (like Vyvgart) are not approved to treat my particular brand of disease, although there are some promising trials going on. It is hard to find a test group, remember, with so few of us affected. I live in the Tampa area (population 3.4 million) so there may be less than 1,500 diagnosed mG patients here. If we actually have about 10% of those diagnosed with sero-negative mG, our study would be of 150 patients (assumung every one of us agreed to be part of the study if there were a study). I actually read of a Vyvgart trial study in China with a sample of only 3 patients. It’s tough out there, fellow sufferers!

That being said, I am currently being treated with immunoglobulin infusions (IvIg) every other week, 240 mg of pyridostigmine (60 mg 4x daily) and 360 mg of pyridostigmine-ER (180 mg 2x daily) to help with vision and muscle issues, and 1000 mg of mycophenolate (500 mg 2x daily) to help retard my overactive immune system. On this regimen I am maintaining a semblance of normalcy. Fatigue? frequent companion. Double vision? constant. Although I am not improving, I spent the first 6 months after diagnosis steadily worsening.

Yes, pyridostigmine makes one sick! Take a few weeks to adjust to the first dosage and increase dosing slowly, adjusting every time. I still might have occasional bouts of intestinal distress! But it’s the only game in town and I need it to get through my days. The extended release (180 mg tabs) smoothe out the highs and lows of the drug getting into my system but it can sometimes be hard to obtain.

I’ll be 77 in a few months, and although my future no longer holds the same promises it once did, it is still bright. Good luck to you.

[MG Community Member]

So, a lot has happened since my last post. I went on to see the top Neurologist at BILH Burlington. He did a SFEMG and said it was borderline. I’m still taking Mestinon, but he won’t refill it as he doesn’t think I have MG. I stopped the Mestinon for one month and then restarted it. while it doesn’t cure my eye issues it does help. I have also been diagnosed with Sjogren’s and switched from Rinvoq to Enbrel (for the RA) and added HcQ and Cevimeline for the Sjogren’s.

I had an appointment with a new Nuero-Opthahlmologist a few weeks ago. Once she saw Sjogren’s she said my double vision was from dry eyes. So, I figure that’s BS as I find it hard to believe I get dry eyes only when driving and on the computer. I’ve been using Theraspecs for each of those activities and they help a bit.

Back to the driving. I took a picture of my eyes right after my 20 minute drive home from work and my eyes are going different directions. This tells me that the muscles are getting tired and the eyes are moving (see pic). The next day I took a Mestinon and 15mg o prednisone an hour before driving home. While this didn’t fix the problem, it helped. I’ll be bringing this to my Opthahlmologist appointment next month.

[MG Community Member]

Paul, thank you for sharing this update. Situations like this can be frustrating. We’re hoping your upcoming visit helps move things forward in a way that feels more responsive to what you’re experiencing. -Jodi, Patient Advocate

[MG Community Member]

So sorry you are suffering. A neuro-muscular physician treats MG, I discovered. The Neurologists are not specialized enough in MG, to my knowledge. Perhaps you could find a neuro muscular in your area and bring your labs to see what they have to say. An MG specialist can also test for other related disorders and provide referrals for those if needed. Wishing you best of luck.

[MG Community Member]

So glad you have been diagnosed, Paul. It took 16 years for me to get a diagnosis but I started having symptoms before anyone even knew that MuSK+ Myasthenia Gravis existed. What a relief to have the diagnosis. I know that somewhere in my records a doctor probably noted that I was a hypochondriac! All those years of knowing something was wrong…..

Good luck moving forward on this – there are some great treatments available now.

[MG Community Member]

Paul,

Not very big on forums but I did read about what’s happened to you. I too had a hard time being diagnosed even though I tested positive. None of the treatments worked for me and both my eyes were closing on their own by like 10:00 in the morning. Had a great surgeon operate and use muscles for my forehead too make my eyes open and close properly. Still have the problem where I can’t seem to get glasses to work for me as I still see cross-eyed sometimes and have a hard time with depth perception. The biggest thing I’ll tell you is to be your own advocate. If he feel something is not being handled the way you want ask for it to be handled and if they don’t then see another doctor. GMG is just too confusing for some neurologists. I happened to move from Virginia Beach to Niagara Falls New York and I have an absolutely excellent neurologist at Dent neurology. They’ve worked tirelessly to help me with my vision problems etc. I’ve had probably 12 MRIs this year. It looks as if I now have a diagnosis of something called keyhole aqueduct syndrome. Super super rare, like 9 to 15 people in the world. Just make sure wherever you go they are cutting edge and super concerned about their patients. And listen to their patients go the extra mile Make sure anything they diagnose you with is correct.

Best of luck to you in the future

[MG Community Member]

Even if forums aren’t usually your thing, experiences like yours are exactly what make this space valuable for others who may be struggling to be heard or properly diagnosed. Your point about self-advocacy really matters, especially for rare and complex conditions.

We’re glad you found a care team that truly listens and goes the extra mile. If you ever feel like sharing updates, insights, or questions along the way, you’re always welcome in the forums.

[MG Community Member]

The best to you.

[MG Community Member]

As far as vision, multiple Eye Doctors have said for me to use Prism glasses but some eye glass specialest’s can’t get it right. The best thing I heard was to have prism glasses for far viewing and one for reading with Prism’s also.

It’s a long road….