New To Diagnosis and at a loss as to how to handle.

[Anita Moyse]

I totally relate to some of the symptoms you are feeling as a “newcomer” when I was diagnosed 40 years ago.  Over the years my best advice is to figure out how to PACE your days..do not overload your body with physical tasks, but create a way to live with quality of tasks not quantity. Definitly create as best a scheduled routine as you can.   You must be sure to take your medications as prescribed.  I have a app I use to remind me during the day that I have grown to love.  It is called MEDISAFE ( I am on  a Samsung Android phone).  Be sure to always have your medications with you.  I am on Mestinon 4 times a day.  Mestinon peaks and valleys quickly, therefore taking it at regular times throughout the day works well.

When you are on a “down day”, give in to it if you can, or pick and choose lesser tasks.

Eat small bits of food at a time, so you don’t use a lot of energy to chew so it can allow the swallowing.  I still choke on and off  these days.

My very best form of excercise is to maintain walking.  Biking is not great, as my peripheral muscles are not at all cooperative or strong.

Make sure you have really good fitting footwear.  You want the shoe or footwear to do the work.  I also wear an orthotic to keep my body balanced.

I have gone to  physiotherapy as soon as I was diagnosed 40 years ago, and have nothing but praise for that type of treatments when the pains might interfere with my lifestyle.  They have been my sole support for painmanagement and mobility ability.

I hope this is some help.

Anita

 

 

[Lisa Blutman]

It is an interesting disease. My first sign was my left eyelid. Since then I had an MG crisis and stopped breathing on them (I was in the hospital for another reason). I take Pyridostigmine 120 mg 4 times per day and CellCept 1000 mg. twice per day. I also had an eyelid lift that my insurance company paid for as the ptosis affected both eyes. I am now considered “stable” and have no issues. However, after 4 covid shots I show no antibodies and my doctors are trying for the new drug Evusheld. I hope you continue to do well.
Lisa

[Kelly Criezis]

My husband was diagnosed with ocular MG almost a year ago and he’s also started having a little bit of intermittent muscle weakness after almost finishing his second round of prednisone. Hoping that the second round does it and this does not progress but there are a lot of new treatments out for the generalized Mg including a brand new one that his physician loves called Vyvgart. Much easier dosing than some of the other ones and seems to be pretty effective and less side effects but not sure exactly where the neurologist are putting it in the course of treatment. There are several others coming out very soon so a lot of positive things on the horizon for such a rare disease. Make sure you read up on it and also ask your physician about them. Good luck and God bless

[Jonathan A]

As a reply to your wondering about VYVART, check into my earlier comment awaiting moderation.

FIND AND JOIN a MYASTHENIA GRAVIS SUPPORT group in your area.   They all have  ZOOM meetings on a monthly basis.   You can ask any questions and fellow MG patients can tell you their experiences with various invasive MG drugs.   Also the MG SUPPORT Group   moderator often invites Solaris and Vyvant representatives who talk about what these medication treatments are.  Also in my recent Phoenix ZOOM meetings, speakers from both of these companies discussed what it is.

Also ask in the ZOOM meetings, if any other MG patients have tried IVIG, SOLARIS, or VYVART Treatments.   From what people are saying … all three of these are     …  being on IV needle infusions on a weekly or monthly basis for a least an hour for each infusion.   They are VERY PRICEY unless you have very good health insurance coverage.

I had  five days (five hours per day)  of IVIG intravenious infusions at the second hospital  … 8 months after I first had my MG symptoms appear and was finally correctly diagnosed by a hospital nurse 8 months later.

These three MG TREATMENTS are IV infusions.   They are not daily MEDICATION PILLS.  I take daily 2000 mgs of CELLCEPT and 180 mgs of MESTINON daily to be in remission now.  I was on PREDISONE for 10 months and my MG NEUROLOGIST finally got me tapered off of it.   Has very nasty side effects.   Weight gain (40 lbs plus), terrible insomnia,  and medically induced Diabetes II

So join your local MG SUPPORT GROUP on ZOOM, ask questions to see if anyone has done IVIG, SOLARIS or VYVART.   They will know what that style of treatment it is,  good and bad the side effects are,  how to negotiate best   … jumping through the hoops of the insurance paperwork, and what websites you can GOOGLE, to tell you what each treatment involves.       LISTEN TO your fellow MG survivors   ….  and BE EDUCATED.

[Jul]

I was just diagnosed about 2 months ago after having symptoms for ~6 months. But I agree with what most are saying. Just pace yourself and take the meds when you need them. The pyridostigmine really helped me, but I know it doesn’t help everyone. I give myself some grace now and I’m not afraid to take a nap when I need one. I work night shift and have a 13 month old at home so it can be tough, but I try not to over do it.

As for the eating, I too had trouble chewing and swallowing before meds and lost some weight. I try to eat more frequently now and the meds have helped. Also more protein and more “value” to the foods I choose. One of my bigger struggles at this point is a loss of muscle mass and arm weakness just from not being able to work out like I used to. I hope things get better for you as you adjust. This new “lifestyle” is difficult. I’m preparing for a thymectomy this week in hopes that it will help my symptoms

[Jonathan A]

You were very lucky to be diagnosed in only 6 months.  NO doctor could diagnose my acute OCULAR and Generalized MG in 8 months of searching for an explanation.  I was finally diagnosed by a third floor nurse at my second hospital.  The three neurologists at the first hospital did not know about MG either, as well as my own eye doctor ….   despite severe droopy eyelid PTOSIS and competing eyeballs.  Many MG patients have told me that an knowledgeable eye doctor can refer you to a Neuro-eye doctor, to get his suspicions tested  … for thymus and antibody bad scores.

You are very luck to still be working.  I had a late afternoon-evening shift, probably like you are on,  but the later hours in the day were always when my undiagnosed illness started getting my leg muscle, and finger strength dying.  No one could diagnose it  .. and it scared me, of when it would be bad, on a work night.  SO I was forced to retire  .. until I could be ME AGAIN.    So it is a great idea to get some resting in to prepare you for the rest of the day.  It has really helped me … along with 180 MGS of MESTINON and 2000 MGS of CELLCEPT daily.

You need to rest and get in remission  … before the “terrible two’s start”.  Take plenty of pictures and stop to enjoy the new kid at home.

GOOD LUCK.

[Jul]

Yes, I realize just how lucky I am in all of this. Even my cardio thoracic surgeon told me how long it can take for a diagnosis.

I’m so sorry that it took so long for a diagnosis for you and that you had to retire. That’s a lot of life change all at once. I certainly hope things are better for you with the diagnosis and on mediation. I get my robotic thymectomy done tomorrow. Glad that I have the option for such a treatment. My finger strength gets weird too without my mestinon. It’s almost as if my fingers are not my own. Not sure how else to describe it!

And yes, I certainly am trying to enjoy every moment with my little one. Thank you! I wish you the best as well

[MikeS]

I was diagnosed about 1 year ago (1st episode was just ptosis about two years ago) and have had two additional episodes (mostly facial muscles involved, i.e. droopy eyelid, tongue, etc.) since the first. On my third episode last December, the neurologist put me on 20 mg prednisone plus 180 mg timed-release Mestinon. All my symptoms (tongue, swallowing, eyelid, other facial muscles) disappeared after a couple of days. Since then I’ve been slowly weaned off the prednisone and am now at 10 mg/day.

When I started at 20 mg I had to also take Bactrim daily until the pred was reduced to 15 mg/day. The combo of 20 mg pred and Bactrim was not kind to my body, particularly my GI system. I don’t like the current side effects of the pred 10 mg dose, but if it prevents another episode, I’m all in.

BTW, on 20 mg pred for one month, all my arthritis symptoms (esp. hands, knees and back) greatly decreased and my joints hadn’t felt that good in many years! Unfortunately, as the pred dose has decreased, the arthritis has returned to “normal”. So I do have one good thing to look forward to (besides relief of MG symptoms) when I get another episode and my pred dose gets bumped back up to 20 or more.

Good luck with your treatment and doctors. Mike

[Jennifer Thompson]

Thank you all for your responses they are helpful!

[Barbara E.]

Sorry, Jennifer, that you’ve joined the MG club. But now that you’ve been diagnosed. I hope you’re able to control your symptoms soon. Until then, remember that you must keep fighting for your quality of life. To do that better, knowledge is power!

MG is called the Snowfake Disease because it’s symptoms/treatments different for each of us. The only thing that most of us find is that our condition keeps changing. Treatment must be constantly customized for YOU.

There are numerous treatment options, but I’ll focus on the usual 1st used medication. Mestinon (Pyridostigmine) is most often prescribed to MG patients in 2 variations – the original shorter acting formula and the extended release version. The original formula comes in 60mg tablets that takes effect in 30-60 minutes and last for approximately 4-6 hours. This medication is tried 1st because it’s easier to try different doses/intervals. But taking too much Mestinon can actually increase MG symptoms. So, the trick is to start on a lower dose and increase until you find what’s just enough to control your symptoms! If you’re taking at least 3 tablets daily, you may be switched to Mestinon ER 360 mg, which last about 2.5 times longer than the original formula. If needed, you may still need multiple doses through the day.

Also, your doctor may prescribe something to supress your immune system, such as Prednisone. Also, there are additional treatments, from surgery (thymectomy), immunoglobulin (antibody) infusions – either by intravenous (IVIg) or subcutaneous (SCIg) and/or plasmapharesis (antibody filtering). Plus, there are more options that you can read about online and you should always discuss with your doctor any recommended options.

I hope you find what works for you soon. Meanwhile, be gentle with yours and eest when needed.

Good luck & take care!
~Barbara