Hi Kater and welcome to the neighborhood!

If the bariatric surgeon is reluctant...I would pay very close attention to that. He's the specialist in that area, not the PCP or the Reumy. Unless we took it (your statement) out of context, I can't believe your doctor told you that without bariatric = no quality of life = death. Geez....where's there breath...there's life...and it's precious.....and let's don't forget....HOPE...

I agree with Atlanta, maybe you can find a dietician or nutricion in your area that can help you on a personal level. You need someone who knows how to tackle this situation head on with your health condition and exercise. It sounds like you are already doing some exercise and you sound like a very determined person. You can do it!

Check with your hospital's staff and talk with the dietician there. That may be a good source of direction for you.

My sister had the same surgery...The surgery does not mean you weight problems are over. She is slowly putting her weight back on and it's because she has some health problems and can't get the activity that she once could do. This is a major decision and I would not base it on just the careless words of your PCP only.

Keep on "keeping on" and stay in there with the exercise. A little activity is better than no activity.

Hope you Have a blessed day.
JJ

Hi hun, first your pcp making that statement is totally off base. Report him to the medical association in your state!! IMMEDIATELY!! And get someone who is compassionate and caring or can at least pretend to be when you are there. sigh. These are the knuckle heads who give docs a bad rap!! SIGH!! Understand that he is not the norm!! Most of us have great caring docs. My doc gives me a hug every visit. When something comes up, he says, we'll work thru this together. I am here with ya!!
Let me tell you what I know about lap bands from a semi personal list of experiences. My mother in law was toying with lap band surgery as she has battled her wt all her life. Up to high, looses it (usually some drastic diet) gained it all back and then some. Well she had her lap band done. First issue for some reason she can't loose anymore wt. Hasnt in 4 months. HMMMMMM. The second issue, she has been seen to be eating what she wants then going outside to toss her cookies, and comes back sits down and eats more. Can you say bulemic??
Ok now she has a male friend, short heavy set man. He has been his current weight for at least the 23 years I have known him. He decided that if she could do it he would too. He hates his. He is not losing wt. Can't enjoy his food at all. REgrets ever having gone thru it all.
Another friend of hers, another overwt person, woman this time. She to is failing to see big results and the constant stress of what to eat when and all the other medication/vitamin issues has caused her to also regret the decision.
NOTE: all of these folks aside from the obesity are healthy. No other medical issues exist for them.
And I too must agree with the other poster, if THE docs who do this to make a living are not comfy with doing it------------that is a pretty good indicator that it shouldn't be done. You are going to be able to find someone who will do it make no mistake. BUT you have a very loud and bright red flag already on the field here with the first doc wanting to run the other way.
I know it is not easy to make these choices. It never is. The best we can do is to listen to the opinions/advice out there. Get all the facts.....listen to your gut talk to ALL your docs and then make a choice.
Exercise for MGers can be difficult. And with one dx that exercise helps and one it will worsen for some it can be daunting. But know what..........there are ways around it. Take a step backwards. Start out with some chair exercises programs. I have a few that are just that. And listen to your body!! IF it says time out, then time out it is. You can split it up over the day. You may even consider seeing a physiatrist (doctor of physical therapy) he/she can help you set up a program that works for the MG and the other issues. And you progress in PT with increased reps so as you get stronger do more, weaker days do less. Not to say be a whimp, we have to push......but only to a point otherwise we get waylayed by the mg and can't do anything for days/weeks.
hugs

HUGS

HI Kater,

wow what a heartless doctor!!
I agree with what everyone else has said.
I found that my physio was the best person when it came to helping me out with exercise, she was very understanding and helpful.
I love getting in the pool, its soooo relaxing and I walk and swim to help exercise. But I do know that swimming can be bad for some people, and I started doing it after I had been doing a bit of walking firstly.
I think also you have to have your mg under reasonable control before you start thinking about any serious exercise, otherwise you are defeating the purpose.
Hope I have made sense and havn't made an idiot of myself
take care
Kate

Kater, I agree with everyone else on what this man said. EVERYONE, no matter what stage of life they are in, deserves to have the very best health care. And no one, especially not a doctor, has the right to decide if your life has quality or not. I also agree that this is malpractice.

Before you exercise with MG, you have to be stable. This is what every MG expert I have had or heard speak has said. Then it's like what Deb said, little bits at a time. Working up to what you can handle.

I use one of those rubber band things, sit on the edge of my bed and do arm exercises. I do arm exercises about 6 - 10 at a time, three times. I do not do those three times in a row. I alternate types of muscle groups so that they all have a chance to rest. There's no rush in doing them!!! You can do them slower than you may be used to. And I try to do this a couple times a day, depending on how I'm doing.

I also "suck in" my tummy, which a physical therapist showed me how to do correctly. It has slower progress but it is progress. I can see the difference. There's also a butt "squeezing" exercise you can do while sitting down.

It might be worthwhile, like these guys said, to not only see a nutritionist but to see a physical therapist too. That way, you have people helping you out, supporting you in making goals without putting yourself into a crisis.

Having a fan blowing on you while you do anything will help keep you cooled off too, since heat is bad for MG. And maybe try to do things earlier in the day when you have more energy.

Since you may have lupus too, you have to be doubly careful about doing too much. Make sure you drink plenty of fluids too. You may want to contact your local lupus foundation to ask if they know of a rheumatologist who isn't such an incredible jerk.

There are ways to lose weight on Pred. Cutting carbs really works. Eating more nuts/seeds. Eating whole foods. Smaller meals, etc.

The lap band certainly does not come without problems. And I doubt it will really do anything to help you in the long run. Just eat smaller portions - that's about what that amounts to anyway.

I hope you can figure out something that works for you. It's not easy exercising with MG. And inflammation tends to kick up after exercising too so make sure you cool down. Best of luck.

Annie

ty so much for the input and info. i appreciate it very much and i have already looked into waer aerobics here.

Hi Kater,

just be aware that water aerobics can be very exhausting for us mg'ers!!! Remember to take it slow, especially if you have to drive home, better still if you can get someone to take you even better.
I really do love the water, I wish I had a pool in my back yard, still the public one is only 5minutes away. good luck
kate

I know that this is an old post, and I hope that Kater is doing well, but I just wanted to share how sickened I am with what that rheumatologist said- how heartless, and criminal to decide what life is worth living--God!

I've wanted to get back into swimming which I used to do a lot before I started getting really sick. I stopped because of the arm weakness and the feeling that my limbs weighed a ton afterwards, but I've never attempted it while being on mestinon...

I'm excited about exercising...I started doing some yoga poses which are really hard (not sure if it's the MG, being really outta shape, yoga's just flat-out harder than it seems, or all!), but my legs do feel stronger and I think that it's helping my back pain...The hardest part is exercising my arms...I used to be able to do like 30-push ups, no joke, now I'm afraid to try even two because my arms are really weak plus the sternotomy (I don't think that the bone has completely healed due to the prednisone).

Let's just say that my sterum isn't completely healed, do you think it's safe to try push-ups in light of this (if it were true, which I can't tell)?

What exercises do you all do? I often wonder what is 'MG tolerance' and normal tolerance...I've started doing jumping jacks, and get winded pretty early on...There was a point a long time ago when i could do 200, but I can only do about 30 now....It's prolly the MG and being really outta shape combo..

Nicky,
I totally agree that the Dr. who said this must not have a heart. It makes me angry to think that ANYONE, let alone a Dr. thinks they have the right to decide who has a quality of life and who doesn't!!!

I basicly just walk for exercise but have been thinking about trying yoga myself. It's been too cold to walk outdoors.I've heard great things about it. I think you are right about it being a combo of things making it difficult. I have noticed my tolerance for exercise isn't what it used to be either. I think if you have any doubt that your sternum is completely healed you shouldn't do any push ups. Maybe you could use light hand weights and just do some toning/strengthening for now. Keep me posted on how the yoga goes after you get used to it. I have never done yoga before but have it on demand through my cable company. I need to give it a shot one of these days soon.
Sounds like you're doing pretty good. How is it going tapering down on your Pred? I saw my neuro today and he is ready to start tapering mine down. One one hand I am thrilled but on the other I'm scared. He said it is time and if I start back sliding we will have to start another type of immunosuppressant. I am battling bronchitis and a sinus infection right now so he told me not to start tapering until I am completely over that. Hopefully my sleep and eating habits will straighten out again soon!!!
Kendra

ty so much for the input. it is great. i also appreciate the encouragement.

ty for ur input and encouragement!