MG
 

New to forum: My name is trish My 55 year old partner was just diagonosed with Mg 2 weeks ago, it seemed to progress rapidly. He was just put on Mestinon and dosages were not lasting long enough in the past 2 weeks. He is choking, troubling swallowing, chewing and his head and arms aver very week, He is out of work now and in the hospital. Neuro is putting him on high dosages of predisone. We live in Nh and was wondering if we should go to boston?

Has anyone had experiences with pred?

I would discuss with your neuro the possibility of plasmapharesis. Try this website, it has a lot of good info on MG. http://www.mayoclinic.org/diseases-c...s/con-20027124. I always suggest to new MG patient that they see a neuromuscular specialist at a large teaching hospital. They are up on the latest protocols and treatment for MG.

Prednisone has its good and bad side. The good side is that most MG improves very fast, especially breathing issues on prednisone. There are a lot of bad side effect being on prednisone long term. Different people tolerate it differently. Some MGers are on it for years and tolerate it well, some can not tolerate it all.

The first time I was on prednisone I tolerated it very well and thought it was a wonder drug. The second time I had the exact opposite experience and had every side effect in the book.

Be careful of the swallowing issues. Can he eat and get his pills down? Is he having breathing issues.

Prednisone is fast acting. There are other immunosuppressant that take longer to work and many MGers start on both at the same time, such as cellcept and imuran. Once they kick in they are weaned off prednisone.

Let us know how he does. Good luck
kathie

Prednisone/MG
 

Im so new to this Im not sure if I am posting correctly. Is the predisone caussing a lot of syliva or is it the desease itself?:eek:

It is more likely to be the Mestinon a side effect of Mestinon can be an increase in the production of saliva.

MG
 

Thank you I have so many questions, and truly doctors are just scientific they dont live the day to day happenings of Mgers(I learned that term here)lol. My boyfriend knows its a lifelong illness yet he just leaves it up to me to research and feed him what I find, i truly dont mind. I just want to know what to expect from others who have it or know about it. This is the begininning of a long journey and I am his lover,friend and most of all caretaker.

Hi Trish,
I'm very sorry to what happened to your partner. It is very similar to the MG onset I experienced when I was 68.
Could you tell us what are his daily dosage for pred and Mestinon?
Cait is right, false routes when swallowing could be dangerous so you have to adapt your (at leat his) meals to what he can easily chew and swallow. Take more meals in smaller quantities in order not to fatigue the muscles involved in the swallowing process. For the same reason, avoid talking when eating.Avoid products like salad which require much chewing for little profit. I found raviolis easier than spaghetti. Use the mixer/blender for meat or vegetables and use spices to improve the taste of such food. Liquid should be sipped by small quantities and jaws should be 2 to 3 inches close to the chin, that opens the throat to the maximum.
Calcium and vitamins D3 should be taken when pred is prescribed, eat one banana per day to get more potassium.
Sleeping problems, glaucoma are possible side effects with Pred.
Do not hesitate to ask questions, many people will be happy to share their own experience.
Take care,
Maurice.

Thank you Maurice, He is taking 80mg of pred in the morning and 60mg of mestonin every 3 hours. He does chew very slow and he takes about an hour to eat his meals. He is taking Boost. Thank you for the vitamin advice. I do watch him constantly and tell him not to eat when I am not home. Thank the good lord I am retired on social security disability from a failed spinal fusion and I am home most of the time.

Do MGers ever go back to work. He is 55 and not quite ready to retire. He is becoming bored so I have recommended he go to the gym and do some strength exercises. I would have to drive him of course. His best times are in the morning, later in the day his eyes begin to droop and he has burred vision.

I work. I am still weak, but I am able to do an easy job.

How long have you had MG? If so what are you taking for meds?

I was diagnosed two years ago. I started with bad symptoms three years ago.

I take Cellcept 1,250 mg per day.

I take mestinon (generic) 60 mg up to 5 X per day.

My original symptoms included:

Falling
Shortness of breath
ptosis
double vision
difficulty speaking (hoarse or non-existent voice)
difficulty swallowing
nightmares (probably because I couldn't breathe)
fatigue

My symptoms now are:

ptosis (not as severe until night)
weakness in my legs (but I don't fall over)
shortness of breath on exertion
fatigue

I'm by no means totally well, but my condition has improved so that I can walk, talk, and eat, and breathe. I will admit that I walk kinda funny....

Oh wow! somewhat of an improvement. My partner(Steven)has only been diagnosed a short time ago. His symptoms are not too severe YET! Do they get worse, depending on medications? He has been on pred 80mgs a day and mestonin. 60mg 6x day he says he feels weaker since he started the Pred. but nuero says thats normal when you first take it. Do you feel thats true? We live in NH a close proximity to Boston and Nh doctors are OK but I feel he needs to go to a neuromuscular doctor or at least someone who is more in tune with this desease. I cant make the decision for him. His doctor is knowledgeable but I dont feel he is experienced enough.

Hi! Welcome to the forum.

Both of you can get more info at these websites.

www.maysthenia.org
www.mdausa.org

There are some drugs that can make MG worse (look at the 1st site). Being outside in the heat or getting overheated by exercising, having an infection, or a hot shower, can make someone with MG much worse.

Pred can make someone temporarily better before they get worse. Tell him to watch the salt intake! People on Pred can have fluid retention.

Some protein shakes are as good, if not better, than Boost. www.iherb.com has some good ones (rice as well as milk or soy proteins).

Yes, some people with MG do work. I'm not one of them, but I can't do the drugs other than Mestinon.

Exercising is not a great idea right now. It sounds as though he isn't exactly stable and he should wait until he knows how his MG will respond to treatment. Those resistance bands (with handles) or exercise chairs do actually work to build strength. He can do fewer reps and do them earlier in the day. Exercising at home means no travel time, no germs to come in contact with, and no "socializing," which can make MG worse. Because his muscles are now weaker, he won't be able to do what he did before (if he did lift weights). And overuse of muscles will now come on more quickly and he could have muscles cramping or spasming sooner. Having a fan blowing while exercising helps keep the body from heating up, too.

I'm sorry about your failed spinal fusion. A friend of mine went through that, too.

Since Pred is an anti-prostaglandin, he might want to take flax or fish or some other type of omega 3 oil (they contain good prostaglandins). They will keep the gel coating of the stomach in good shape, which Pred tends to thin out.

He's on a fairly high dose of Pred. Did the neuro give him any kind of taper schedule? Was he given IV Solu-Medrol in the hospital (that's standard)? Pred can help with a crisis, but it comes with a boatload of side effects and is extraordinarily difficult to withdraw from, as these guys have said.

It couldn't hurt to have a consult in Boston. They could make recommendations and send them to his regular neuro. That's done a lot with MG patients.

If he has any breathing issues where he can't breathe in or out well, that's an emergency and he needs to dial 911. That's also the case if he can't swallow or can't move well (generally weak).

A pulmonologist is a good doctor to have on the team. They can periodically check on the strength of the chest wall muscles. It's good to know a baseline so that the doctor can know how worse he might get. MIP and MEP are MG-specific breathing tests that should be done.

Does your partner have any other conditions? Pred can make diabetes worse or can bring it on. Also, a lot of MGers also have other autoimmune diseases such as thyroid (Grave's, etc.), pernicious anemia, celiac disease, some clotting disorders such as antiphospholipid antibody syndrome (APS), etc.

What else can we help with?

There's a lot to learn about MG. Unfortunately, many doctors either don't know the information or don't have the time to talk about it. There are some MG groups in certain states, which I think the MG site has listed (haven't been there in a while).

He's lucky he has you watching out for him. He needs to learn as much as he can, though, such as don't push MG or it will push back. ;)

I hope he'll find the right balance of meds and lifestyle.

Annie

New meds for Steven
 

Doc is weaning him off 80mgs of pred a day he is now on 40 every other day. Today he was put on Imuran 50mgs. I read the side effects. It seems that no matter what meds a person is put on the side effects are sometimes not worth it. Has anyone ever taken Imuran and if so what have been the results? Thanks Trish:confused:

Yes I was on it for 12 months and lost a bunch of weight due to nausea. My Dr and I both feel it was working. After my body got rid of the Imuran I felt like I was 21 again. That only lasted a couple of weeks. I hope Imuran works for him. I'm now on Cellcept and just sorta stable. Haven't had to have IVIG for a year now so it must be helping. I'm almost off Prednison after 5 years. Please remember we are all different and each of us react different to each drug. I also take mestinon daily but appears to have little effect.
Mike

Hi Havnt posted in a while. Steven my partner has MG I have said that in other posts. His Dr is weaning him off Pred and he is takig 40mg every other day along wth now Imuran. Since the Imuran he is experiencing sharp quick tingling pain in his hands and on the side of his face. He also feels quick rapid fluttering behind his eyes. He does not know if its from the Imuran. Has anyone felt this effects? I worry everyday about him. He is not released to go back to work and I do not believe he ever will. The pred is making me dislike him right now he is not his regular self. HELP!

So, they started the Imuran at the same time they went to 40 mg. of Pred every other day?!!!

This topic makes me nuts. Going from 40 mg. of Pred to zero the next day—after someone has been on it for a while—makes a patient basically go into an adrenal "drop" or crisis on the zero days!!!

Adrenal glands don't "work" after someone has been on Pred for a relatively long period of time (could be even a month). Then someone can have all of the symptoms of an adrenal crisis (which can be life threatening), such as sweating, extreme fatigue, irritability, etc.

Did Steven's doctor do the TPMT test BEFORE he put him on Imuran?!! If not, he should have and needs to do it ASAP. Some people cannot take Imuran due to lacking TPMT activity.

http://emedicine.medscape.com/article/1829596-overview

I hope Steven will contact his neuro tomorrow and discuss ALL of this!

And he also might have a low calcium or other electrolyte. Does he take vitamin D and calcium daily, due to the Pred? What about omega 3s due to the Pred?

I hope he'll be okay.

Annie

Yes the Imuran was started when he reduced the pred from 80mg a day to 40mg every other day. He does have sweating, fatigue and he is very very very snappy and flys off the handle with almost everything. What is TPMT test?
Also do you know of any sharp quick pain in hands and face? I did ask but you might have not remembered to address it. Fluttering behind the eyes? Could this be the Imuran?

We have an appointment with neuromuscul but not until Feburary. Specialist are hard to get in to see. She is at Lahey Clinic in /burlington Ma.

He takes D,calcium and I will get him on Fish oil.

Thank you so much for your response. Look forward to another. Trish

My thought is you can not wait until Feb. The taper strategy from pred should be addressed immediately ... if not with prescribing doc, then with your GP or an endocrinologist. It sounds way too aggressive and could be the cause of all you describe. If it were me, I'd start with an opinion from an endocrinologist on the pred taper.

We do not have a choice when we can get into neuromuscular. You all know how that works its wait, wait, wait. We have an endocrinologist but he just biopsied his thyroid for some nodules. He is fully disgusted being on pred and now after reading Annies' reply I want the imuran issue figured out. This is all new to us and we need all the advice we can get.

As Sue said, you do NOT need a neurologist to address these issues!!

Do you have a primary doctor? If so, then go to them immediately. Tell them that Steven is having a severe drop in adrenal function every other day! It's an emergency, you know. People have been known to go into a coma (not that he will, but it's possible).

An endocrinologist would be best, but time is of the essence here. Who cares if the endo just saw Steven! You can make as many appointments with a specialist that are needed!

If your primary doctor doesn't address the Pred issue, then he needs to see someone in an emergency room. Yeah, it's that serious. And the idiot neurologist is in legal jeopardy from doing this, because he is causing harm to Steven!!! Don't be too hard on him, however, because many doctors are clueless about this topic (which is astounding).

And Steven, you cannot help yourself during that severe of a drop in Pred. Those moods you're having are literally unstoppable when adrenal function tanks. It's similar to when blood glucose is low or other various medical conditions such as that. So don't beat up on yourself over it. :hug:

That is a separate issue from the TPMT.

If you have the TPMT gene, then your liver cannot metabolize the Imuran. Read the article I posted. This is a more straightforward article.

http://labtestsonline.org/understand...tpmt/tab/test/

A primary doctor can test for that, too! It's a simple blood test.

Steven doesn't have to have fish oil. Walnuts are good, flax seed/oil capsules, krill oil, etc. Just eating fish will help!

I really hope you guys get this taken care of right away!!

:hug:
Annie

BTW, there is ALWAYS a choice when it comes to medical care. You can at least call the neuro tomorrow and leave a message. But do not wait for them to respond, because Steven needs help—like a month ago.

Annie, Steven had bloood test in the hospital. I cant be sure but I think his liver and blood count was addressed befor the Imran. I have been concerned with the twitching pain in his hands and face, and the fluttering in his eyes. I feel confident on his care so far. I am carefully monitoring his actions and I am taking your advice very seriously. I wanted to ask you as well what you take for meds?

I can only take Mestinon, unless I have another crisis. The other drugs are contraindicated for a lot of reasons. I have to manage with rest and common sense, plus my afternoon cup of coffee. ;) I've had steroids, as have my friends, Dad, lupus patients I've known, etc. And I am NOT confident about the Pred care he his having.

Twitching in his face/hands could be a number of things, such as an adrenal crisis, electrolyte imbalance, B12 deficiency, etc. It might also be that the Imuran and steroids have kicked in and he might be overdosing on Mestinon. Is it still there between doses of Mestinon?

I would highly recommend that you go see an internist/primary doctor to discuss all of this!!!

Annie

Yes Annie e is on 40mg pred every other day,60mg of mestinon everyday and 50mg of imuran everyday. Plus he takes this anti-diarirrea med as well. He is a stubborn man and feels he is doing ok. The only thing he complains bout is the twitching and rapid eye movements. We are seeing both neuro and pcp Jan 5th and 6th. He doesnt seem distressed, but he might be covering it up,. Thank You for all of your responses:p

http://emedicine.medscape.com/article/765753-overview

http://www.nytimes.com/health/guides.../overview.html

http://www.prednisonefacts.com/predn...awal-symptoms/

http://www.nadf.us/adrenal-diseases/...insufficiency/

http://www.medsafe.govt.nz/profs/dat...dnisonetab.pdf

1. Consult with an endocrinologist.

2. Wear a medical alert tag and carry card to alert medical professionals.

3. Please stop the damage being done to your body due to the zero day putting you into a severe withdrawal by talking to a doctor right away, Steven!

With respect,
Annie

Hi Trish. I don't post much, but reading about Steven's Prednisone taper I feel the need. Annie is correct, Steven's pred taper is at best INSANE. I was diagnosed 15-16 years ago and in that time I've been on and off Prednisone many times. Although it has been said that we are all different and react differently to medications, it took me about a year to come off 100mg. Looking at your prior posts, Steven was on 80mg two months ago and is now on 40mg EOD (every other day). Way too fast! I've had different neurologists since my diagnosis and no one ever went that fast. I understand the need to get off pred due to the long-term risks (I'm dealing with a few), but not to the detriment his current health.

I also take Imuran (200mg) and mestinon (60mg) 2-3 times a day. I'm currently on 25mg of prednisone, up from 5mg a year ago. Current neuro said that last year's record low temperatures were the cause of my current flair, so it's not aways the heat.

I can't speak to the twitching or eye pain. I can relate to the aggressive moods. I told friends and family that it may be a symptom of high dose pred, they didn't tell me how bad I was until I was at a lower dose and acting more like "myself".

Hope this helps,
Jim

Hi Trish, I am new here myself but I also feel that the taper is way to fast. I am on a relatively low dose of preds 40mg and 150mg of azathioprine also 60 mg Mestinon x4 per day. Would like to add that when starting azathioprine had to have a blood test first and then for the first month a weekly blood test to monitor my reaction to it. Also azathioprine can take months to kick in and my Neurologist wont start to taper the prednisolone until he is sure that azathioprine has kicked in.

Regards John

Thank You Jim Since u have had this desease so long you know the aggressiveness and it can be frustrating. He has only been diagnosed 3months now and I dont think he has fully accepted his illness. He is currently out of work and just sits and watches tv all day long. I know he gets tired and takes lots of naps. He says he is not depressed, and that he has come to terms with it but I dont believe he has.

Are you working? and if so were you ever out of work? He has the attitude he will never work again. He is only 55. Thanks for posting.

First of all, John is correct. I had my blood tested before starting Imuran (azathioprine), basically to see if liver and kidneys are OK. I'd never heard of the TPMT test that Annie mentions, but trust her, she knows her stuff. Imuran takes several months to kick in, somewhere between 3-6 months, but it can take longer. It's at this point that the pred is tapered off.

Here's a brief history of me: I was quickly diagnosed at age 37. Annie may remember me as JimInTx when this site was called BrainTalk. My internist started me on Mestinon TimeSpan (timed release and no longer available) and sent me off to his brother the neurologist. I had all kinds of tests done to confirm the diagnosis. A subsequent CT scan showed a hyperplastic thymus with thymoma. I sport a 9" transternal scar from that episode. If I recall, Imuran and Prednisone were soon started. Prednisone was increased to 100mg due to a stressful job aggravating my MG. I was also put on low dose Effexor ER to help with stress (now contraindicated for MG patients). Two promotions and a whole bunch pills later the financial crash happened. Lost my job. I've been on and off antidepressants. I've moved back to Michigan and now live with my 86 y/o mother, managing the house and yard. I've looked for work here, but soon after losing my job I lost sight in my right eye. Not MG related, but being immunosupressed didn't help matters. Believe me, I want to work, but the MG flairs and eyesight limit my prospects.

I'm now 53, similar in age and out of work. To answer your questions I was diagnosed at 37 and was working and continued to work with the exception of a few medical leaves for surgeries and other medical procedures. Now at 25mg of pred I'm not really aggressive, but I do have a short temper. Depression? Hell yes. I came to grips with the MG issue 15 years ago, loss of eyesight about 7 years ago and now coming to grips with ostioarthritis. My MG isn't as bad a most here. I mow the lawn (self propelled push mower), shovel snow, clean out gutters, etc. I was going to volunteer at the local MDA office until they moved across town. I'm considering the local humane society when I'm a bit more stable. I'm hoping that will lead to new friendships, better self-esteem and possibly a job.

Let me know if I can answer any other questions you may have.
Jim

Your post was was sad and I truly am learning a lot on this site. I cannot believe you were 37 when this happened. How did u lose your site? And I gather that you are depressed if you are on Effexor. Where you in the stock market? That was a horrid time. I lost lots.

Steven cannot work he works with thousands of dollars of equipment for the goverment and his hands sometimes loses their grip and he could drop things. I am home on SS disibility with a severe back condition. I had a fusion in 2010 and it failed so I have not been back to work. I am here coping with my illness and trying to get him motivated. I know this is new to him but I hope things change and we can get our life back.

I didn't mean for my post to be sad, but informative regarding work. Sure, it sucked getting diagnosed at 37, but I was at least diagnosed very quickly in respect to others here. Yes, Effexor is an antidepressant. If he should need an antidepressant I'd start with celexia. Generic is cheap and there are few side effects. I don't take any antidepressants now. (Check out www.crazymeds.us). If Steven is having trouble swallowing he might try turning his head to either side and then try swallowing.

I lost my right eyesight due to a massive infection. I had another infection along with a bout of Shingles that affected my left hand (neuropathy). Yup, you guessed it - I'm left-handed. Fortunately I worked retail on the corporate side so I basically sat on my butt in front of a computer. I ran into trouble when I had to travel for business. Nothing in particular, just the hassle of it all.

I've no advice for the issue regarding his grip and work. Have you registered with MDA (mdausa.org)? They publish a magazine called Quest. Besides informative articles, there are ads for all kinds items to help around the house. I do suggest plastic tumblers at home for drinking, but keep the red wine away from the white carpet. I have managed to keep my sense of humor throughout the years. I recall in recovery from my thymectomy that I asked for a beer after being told I had to pee before being released to floor care or risk being catheterized (I didn't get either). For a good laugh, remind me to tell you the story about my best friend and I taking out my IV.

Steven will improve with good care. Sounds like you are a part of that. Just be sure to take care of yourself too.
Jim

LOL! do you drink beer now? steven loves is beer but has cut it off quite a bit almost to none. You do have a sense of Humor. Tell me the story of the IV.

Did I ask you if you had your thymus gland removed? They found a shadow around his but they did not recommend surgery. They say removing the gland could possibly help with MG???? But very invasive?

I'll have an occasional beer, but prefer wine. Probably a good idea that he has cut back his consumption until he knows how his body deals with the meds. Some people will get a red flush of the face after drinking if they take mestinon. It's usually harmless. Others here can't tolerate any alcohol. Be sure to check his meds for any interactions with alcohol.

I had my thymus gland removed when I was 37. I had no choice since I also had a thymoma. A thymoma is a (usually) benign tumor that occurs in 15% of cases. I posted a link to information regarding thymomas on the "thymoma" post here. It can be an invasive surgery, but there are other methods. I had mine removed trans-sternally, the most invasive. I questioned my surgeon and he said that he preferred a "wide view".

The jury is out on whether the thymus should be removed (without thymoma). Some claim it can lead to a drug-free remission, other studies say no difference.

The "shadow" thing should be watched closely. Was the shadow found on a X-ray or a CT scan?

I'll post my IV removal story later or send it to you privately. This thread should be about Steven and not me.

Take care,

Jim

Its ok this is about all Mgers. I like hearing stories.
Yes he gets flushed if he has 2 beers. The shadow is being watched it was found in a ct scan along with 3 nodules on thyroid(non related) two were biopsied the other is too close to the coroid artery and because of the Pred he was too fidgity the endocrinologist wants to sedate him with some valium or xanax before he does the 3rd one. The 3rd nodule is questionable.

He had lost 12 lbs a while back because of the swallowing and chewing and choking. Now that the pred is working he is gaining weight and eating lots of sweets. Im concerned with that. I dont want he to develop adult diabetes.

What are your thoughts on that?

My thoughts would be highly hypocritical, and that I should practice what I preach. I'm eating holiday cookies, candy and junk like there's no tomorrow and I come from a family of type 2 diabetics (I've dodged that bullet, for now). I've gone through the same thing Steven's going through, it's a side effect of the Prednisone. I've gained 20 lbs in the last year due in part with the increase in pred.

If it hasn't been done, I'd have his glucose tested along with a lipid panel (cholesterol, etc.). Prednisone can alter these numbers. Both tests require fasting. Yes, I had mine recently tested and all were normal, whew!

I'm sure fruits and vegetables die a slow death on your counter as they do on mine, but I try to hide all of the junk in the 'cupboard of shame' in the kitchen. It takes away from the visual stimulation. I also try not to eat directly out of the box or bag, instead pouring snacks into a bowl. It makes you aware of your intake if you keep going back for refills.

Can he do any light exercise?

Jim

You are to funny!
 

His blood work came normal before he was diagnosed in Sept. Yes the fruits and veggies die a slow death in the frig. He only eats bananas! Pie,cookies,devil dogs,and pop tarts. LOL!

He can do light exercises but doesnt. He sits in his recliner all day and watches tv and eats. He typically is very hiper an is a mover and a shaker! But not so much anymore. His weakness is getting worse and the snappy attitude is just horrid! Im on SSDI myself for spine surgery that failed and also collecting LTD so I cannot go out and get a PT job but if I could I would. Just to get out of the house for a while. He is driving me nuts! The Pred is an awful drug.

I'd kill for a strawberry pop-tart with pink icing! But, it's one of the nutrition bombs I did give up.

I'm concerned about him getting weaker. Has his Prednisone taper been addressed? This could be the cause of the weakness if it's going too fast. I'm sure you both want the Prednisone to end, but it does have its place for those who can tolorate it. I'll be the first to agree that it smells, tastes like ***** if it gets stuck on your tongue, makes you fat and bitchy, etc. If he still has insurance you might look into a course if IVIG. I have no experience with IVIG, but many here rely on it. In retrospect I probably should have tried IVIG during a flair-up rather than to have taken all of the pred for all these years. I'm now trying to cope with the long term side effects (not to scare you).

About you: Are you physically able to leave the house? If so, have a buddy of his come over and watch a game with him while you have a "girl's night out." Here's a link about caregivers from Quest magazine:

http://quest.mda.org/categories/caregivers

Jim

I live in NH too
 

My father started having problems talking back in July this year, doctors thought he had a stroke, couldnt confirm because they couldnt do an MRI due to my Dad's pacemaker. Long story short, 5 months later and my Dad chokes, can hardly breathe, cannot walk, cannot take meds. It took going to the emergency room 3 times (last being last night) to get them to wake up and do something. A cardiologist came in and did some testing and said he thinks its MG. Got home last night and googled MG. OMG..he has every single symptom. He has slight pneumonia because food particles got in his lungs so he spent the night at hospital. Even though I am still very very scared and nervous for my Dad what a relief to find a diagnosis. I know we are on a long road of recovery, my Dad is 79 and I am hoping he is strong enough to get through this. I live in NH too and for some reason just wanted to share this with you.

Welcome lylah. :Wave-Hello:

Welcome Lylah - I hope your Dad is improving. Pls remember that even just socializing with family can be sap a lot of energy from an MGer. But now that you have dx, I hope things will get better quickly. What meds have they started him on?

Miasmom, I wouldn't push the exercise thing at least until after he stabilizes. I have a mild case of MG and I tried exercising for the first 3 months and it just made me more wore out and it also didn't give me a true measure of where I should be with mestinon. I was taking too high a dosage and that made me worse as well. After I quit exercising I was able to take half the dose and my droopy eye along with my throat tightness have all but gone away. I still don't exercise now as I work full time and I have a 2 year old granddaughter that lives with me. That is all the exercise I can handle. I am also 55 and was diagnosed Thanksgiving weekend of last year.