hi , and welcome to the group, are under the care or a neuro or a primary, because with mg, it is imperative that a neyro takes control to help you with meds, and a proper dicution whit him should help you troughout the process,shortness of breath and havin g cough are mg side effects, what thy call mg cough is real, it is a cough very dry, no fleme, mucous or others, it will if excessive rip tour muzscles and nervs ending, i know because i have it, in november 17, i went in prelapse the worst in my life, caughfing my life away as on of the side effects of mg,my neuro got me to the hopital as emrgency and set me with ivg plasma-gamunex-c twice montly for one year, at my second month infusion, my cought was suppresed by 60% and by my 3rd. all was gone..
the way you explained it seems that you are under medicated, would aadvise you that you get en touch with your doctor and have an extended conversaation in regard of your care
also i set up for all mg's a blog a week ago tahing abouy mg, meds ect, it is called CLASSIFICATION OF MG FOR ALL, you should look at it as it concern all of us,, would like some feed back, it explain what is all about since its discovery in 1672 ,and the inportance that we take full control of ur disease,to be able to live a prety fair life best of luck,Andre(fighter)

Fihghter,

Thanks for your response. Yes I’m under the care of a neurologist. I’ve seen a neurologist and a specialist. The cough doesn’t last because I immediately take a dose of mestinon. It seems to happen when I’m due for my next dosage and it’s just as you described; a non productive cough.

I was diagnosed with fibromyalgia and chronic fatigue syndrome 20 years ago. Just when I got these illnesses under control, I started having horrible fatigue issues (this fatigue was different then what I was used too) and horrible double vision. Because of the fibro/CFS, I lead a cautious lifestyle already, my symptoms seem to be under control right now except for disabling double vision. I’m on disability, so I don’t have to worry about driving to work. I make sure I get plenty of rest and naps when needed, stress is kept to a minimum, I don’t over do it and etc... I have a wonderful partner who knows my limitations and is very supportive. I’m staying away from steroids because I was on them for 10 years and stopped back in 2013. I blew up, had the moon face, gained 40 pounds and didn’t look like myself. Also as a result of the steroids, I am prediabetic and have issues with my cholesterol. I am currently getting fitted for prism lenses for the double vision. One thing I’m having a terrible time with is my fibromyalgia seems to be constantly flared up. The muscle pain (all over, body wide) is to the point I’m in tears, as well as, the leg pain.. So, I have to back off the mestinon at times.

Thanks again for your response. This forum is a blessing and is so informative. It gives us fellow MG patients another means of support that we may not find at home.

Robin

Hi Robin,
I experienced my first symptoms of MG in 2008 when i was 13 years old. I had problems with speech and double vision while reading and writing. I consulted a number of doctors but couldn't get the right treatment.
In 2015 i suffered from lichen planus and in 2016 i had chronic urticaria that lasted for 8 months. Soon after i recovered from chronic urticaria, i started experiencing terrible weakness, which used to be more in the left side of my body. I started experiencing problems with swallowing, walking, holding objects, writing, breathing, speaking and the diplopia got worse. Especially at night, the breathing problem would get worse.
After undergoing a number of tests in 2017, i had been given a number of medicines (steroid immunosuppressants, cholinesterase inhibitor, vitamin B , D, S-adenosyl Methionine and coenzymeQ). I had a hard time while taking these medicines as i my entire body got bloated, i gained weight, developed type2 diabetes and used to get a terrible twisting pain on my leg. I was also diagnosed with peroneal neuropathy. After a few months my steroids were stopped and the neurologist prescribed mycophenolate sodium tablets. During this time i also experienced steroid withdrawal symptoms (severe depression, anxiety, bad appetite, light headedness, dizziness). After 10 years, i am finally showing improvement in my condition. Recently i had an allergic reaction to smoke and after i have again started experiencing breathing difficulties. I feel extremely weak and feverish.
Since symptoms of MG worsen during stress, try to be happy and please avoid taking tension.

All the best,
AV.

Hi Robin, as i read your reply i see that ou have a full plate, i forgat at my prior answer to mention a fact that may well help you for your pain and cramps, i had those all over my body, and i use a tensill machine (hand held) for about 10 minute where it is the most painfull spot, you be amazed of the results, it cover me when my neoros receptors get depleted, even with you fibromalgia it may work, also for all the things that i see in your reply, it would be imperative that you change completely your lifestyle, i mean foods, no red meat, no make with hormones, eat salmon, chicken, pork for their enzymes, lots fruit and veggies, no sodas only in ocasion just for the test,beleive me that will control your blood sugars and cholesterol, and if you can try to walk 30 t0 35 minutes dayly slow as it is an excersise free of stressfull motions.
the reason we are here is to explain what we go thru and try to help with our own experiences, with the hope that each of us uses bits and pieces of iformation given
best of luck, Andre (fighter)

Thanks for the reply AV!! I’m so sorry to hear of your health problems. Your so young to be going through this. I’m glad to hear your doing much better after 10 years struggling on steroids. Ugh! I know what you mean. My health issues started when I was 34 which seem a lifetime ago. I wish you much luck.

Hi Andre,

I think my next step is cleaner eating. My diet isn’t bad to begin with. I try to eat organic whenever possible. And I keep red meat to a minimum of once a week. Can you explain to me why no red meat? Even grass fed & no hormones? I’m just curious.. I understand eating salmon (fish), chicken & pork that are hormone free. I don’t drink regular soda at all. I drink diet which I understand now is just as bad as regular soda, minus the calories & sugar. I don’t eat junk food either.. I use to be a runner and would run 8-10 miles a day! I have a tens unit and I didn’t find it helped much. I’ll have to dig it out and give it another go!!

Thanks again for the input and info! I really appreciate it.

Hi Robin
the reason i me ntioned mo red meat even do they maybe with out hormones its because infortunatly oters diseasea are upon them like mead cow disease and slaughter houses may not cah it or dont vare and process the meat. all are uspositions but why take the chance, with mg, you realy have to be prudent more so couple with what you have, as red meat I WOULD SUGGEST THE FOLLOWING I EAT VENISON MEAT, BUFFALO MEAT I BY ALL BUT GROUNDED, this if you must have a piece of res meat, for some reason they are heathier products, also you can buy crocodile meat which is wonderfull, with th other red meat you will control you cholesterol much better, also i forgot lamb or goat is good.
hope that this will help you, take care, Andre(fighter)

Hi Andre!

Ok, I totally get it. Cutting red meat makes perfect sense now and thanks for the additional suggestions for protein. I love lamb. Thanks again for the input!

Robin

I have the same problems Daisy . I carry mestinon with me everywhere just Incase and patassium helps me with my breathing as well . It also relieves some of my fatigue . Idk of you find that eating foods high in patassium helps you as well ?

I take mestinon too and carry it with me. I was just diagnosed in September, so I’m still figuring things out.

I was diagnosed with sleep apnea about the same time as MG. Not sure if they were related or not, but I found the breathing machine -- called a CPAP, helped me through breathing troubles. When I felt panicked because I was having trouble breathing, and my extra mestinon hadn't kicked in (or didn't improve it) I put on the machine and it pushed air in and relaxed to let me breath out. Soon I would be OK again. At night I wore it and didn't have to take any mestinon over night-- something I liked as it helped get rid of the leg cramp side effects.
The machine made my worst months of MG much better. Mayo Clinic did some research and found that if MG patients coming to the ER with breathing problems were put on a CPAP (or BIPAP) instead of intubated they did much better -- home earlier and no messy procedure and special care.

My only MG crisis was when I couldn't breath and got panicked. I was walking from the waiting room to my neuro appointment and by the time I got there I couldn't breath -- so he sent me to the ER. This was very early in my MG when I was on three 60mg mestinon pills a day and thought I had to follow that schedule exactly. At the ER I was admitted to the neuro ICU and eventually they realized I needed about 60 mg of Mestinon every 3-4 hours to function while waiting for prednisone to start working. That is where the neuro told me that my CPAP was preferable to intubation and worked better.

Good Luck
Russ

Thanks Russ for your response. My breathing gets shallow with a slight unproductive cough. When ever this happens, I immediately take a mestinon. I’m trying to figure out if this is an anxiety attack or the beginning of my body not being able to breathe properly. I get scared and try not to panic. The mestinon definitely fixes the issue so I’m guessing it’s not an anxiety attack. I’m curious what other people experience when they start to have breathing problems.

Thanks
Robin

Hi Robin, sorry about your breathing , remenber i mentioned to you the importance of the prednisone, with out it you will never be able to control your symtomes, when your throat star closung up ,you need the corticoid streroids to kick in and take over the control, dont forget that all of us have a different body constitution,and different forms of mg, ( goes from 1 to 4b) so you have to do what is correct for what your mg. dictates, as for your "anxiety attacks" i would advise you to lok for some alternatives like herbs teas, that will work to control and not have to take unecessary drugs, that may affect you adversally
in about a week i will writte a blog that i know you willbe interested, so watch for it, Best of luck, Andre (fighter)

Daisy

Do you have any other symptoms related to your 'unproductive' cough? For example, slurred speech, excess mucus and other such things associated with bulbar MG? You can see where this might be going and I have to admit that there is an element of me passing my own MG symptoms across to you.

Best

Peter

Thanks for the input Andre. Your so knowledgeable! I’m trying to stay away from the prednisone at all costs due to being pre-diabetic from 10 years of steroids, as I mentioned in a previous post.

Peter, I don’t have any of the other Bulbar symptoms. The cough is unproductive- No mucous and I haven’t had issues with slurred speech. My main symptoms are severe double/blurry vision to where I can’t drive. (I’m in the process of getting prism lenses) Disabling fatigue, weakness in my legs, arms and neck, which align with my diagnosis of generalized MG. Right now the mestinon is definitely keeping my symptoms in check. I am very cautious and careful not to over do it, get plenty of rest and eat a healthy diet.

Thanks Robin