I had a PC Dr appt.last week to go over blood tests. I asked: if I don't have RA or Fibromyagia or arthritis, then why, why, am I so achy? Sometimes my legs won't move because of stiffness. She said:wait for it....inflamation in our bodies along with stress, what we eat, and sleep. I've been told my weight gain is directly connected to stress, the cortisol levels in the liver. I'm not exercising like I would like, but I know that will help.
I think it's important to keep talking about this with our Dr's and amongst ourselves.
Let's keep open discussions going!
Wellness,

http://www.ncbi.nlm.nih.gov/pubmed/19149749

The above link which Dealmaker posted is a National Institute of Health link on this subject.
Wellness,

Megan, thanks for sharing your experience.

Bamboo, I completely agree.

Most ppl are insulin-resistance and they should try to increase their insulin sensitivity. When we are insulin resistance, your body doesn't release insulin to combat the cortisol

http://www.ncbi.nlm.nih.gov/pubmed/9425398
http://www.todaysdietitian.com/newarchives/111609p38.shtml

Overcoming Insulin Resistance
http://www.womensinternational.com/connections/insulin.html
http://www.poliquingroup.com/ArticlesMultimedia/Articles/Article/1267/Nine_Things_that_Improve_Insulin_Sensitivity_Accel.aspx

Adrenals, Cortisol and Insulin
https://www.adrenalfatigue.org/hypoglycemia

Regarding joint pain, one cause could be low-estrogen. Without it, your joints can become dry and ache.

References:
http://www.ncbi.nlm.nih.gov/pubmed/23511705
http://www.drmagaziner.com/is-there-a-link-between-estrogen-and-joint-pain/

Hormones is a great topic and it can be a challenge to find a M.D. willing assist you with getting the right balance.

Hope you enjoy these.

DM

I strongly agree that hormones are really important. My Vitamin D level is critical to my health and it is now considered a hormone, not just a vitamin.

Low estrogen certainly causes me achy joints. After my hysterectomy I could barely walk with sore ankles and knees until my dose of HRT was raised. I've been since trying to cut down the dose and was able to drop it, very gradually by 40% but then the joint pains came back. I'm staying where I am now as there are too many issues more important than that now. My family doc said that high alcohol consumption would increase my risk of breast cancer (no family history) more than the dose of estrogen I'm on. My half glass of wine at my monthly book club certainly isn't increasing that risk!
Flutebell

Dealmaker, thanks for posting this topic. you are right food is an integral part of our health as its the source of nutrition and can be the source of ingredients that are not that good for us.

I would ask you to pause and think about the cause of MG, its relationship to inflammation and response to prednisone. In reality inflammation is a result of the attack by the immune system on our muscle receptors. Inflammation is not the cause of MG. In any autoimmune disease or simple injury, the body has been injured and the bodies natural response to protect itself is inflammation.

When we take prednisone this does help reduce the inflammation, but that is not the mechanism that helps treat MG. The main causitive result of prednisone after it is taken for a while is the suppression of the immune system, which in a autoimmune disease is exactly what you need. Again inflammation is the result of the disease not the cause.

With that said we can and do eat foods that contribute to inflammation. When we notice chronic inflammation we should pay attention to our bodies and what that inflammation means as thats usally a sign something is going wrong.

Joe

I have not posted in a while, but it is crucial to remember that some people on this site are fighting for their lives. Some people here are days away from respiratory distress that can not be controlled and will land them in the ICU. This is a serious disease and several of our own have died.

Please remember to listen to your doctors first and foremost. If you are stable enough, yes - please alter your diet and see if it might lead to a better balance and then you might be able to lower the dose of some of your immunesuppressants. Using diet and exercise to decrease inflammation is well documented and can help significantly, but look at this like a complementary therapy.

Momistired, you are so correct while some of us may not be that sick many of us are. Just 11 months ago I learned this lesson firsthand and the hard way. I went rapidly into respiratory arrest and spent just about a month in the ICU in a coma unable to breathe on my own. It took another 3 months to be able to really walk again or use my hands correctly.

I know DM has a lot of good information to share and has been able to do well with it, but we do have to be very careful. I would not wish the hell I went through on anyone and the scary part, it happened quickly with little warning or being too worn out. MG when it is active can and will kill if allowed, we have to be cautious and work closely with our doctors and take thier advice.

I know I have changed how I approach not only phycical activities but also other stresses such as too much heat, emotional stress and also being cautious on what I commit to.

Its probably a good time to bring up the spoon theory, its a great way to think about our daily energy budget and its also a way to talk to others what it is like to live with MG.

For those not aware of the spoon theory here is a good link to it.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Joe

I think most of us know if we are over weight or not and that if we are carrying excess weight we know that it isn't good for us, M.G. or not. I believe Dealmaker could have presented this in a way that perhaps we could have posted as to the facts that yes excess weight is hurting us, as I said, it hurts everyone that is overweight...I love this sight and the support that is handed out and don't feel that I need someone to try and spank me if yes I am a few pounds overweight and I complain about some inflammation.

I had put on quite a bit of weight due to my thyroid situation and still struggle after many years to get the weight off and to have my Dr. get my thyroid under control. As a matter of fact I just got out of the hospital from having a heart attack and they found out my thyroid level was .008, in February it was up to 11.01 so go figure??

I am fine now, but still have the thyroid trouble, they M.G., fibromyalgia, high B.P. and high cholesterol among other things. I have lost almost 50 lbs and still have a long way to go, but don't beat me up for it...I am a BIG girl in more ways than one and I know where my trouble comes from.

Way to go and start a huge stink for what??? Just to point out the obvious to everyone??? Come on, this is a support group...support us and we will do the same for you. Thank you and God Bless!!!

Bamboolily
I am socked that not eating sugar took my stiffness away.
go figure

Yes I agree that obesity contributes to poor health but I also agree that one must follow a doctors guidelines. I am ashamed to say that on least one occasion I was ashamed of being sedentary because of this disease because of everyone's applauding the marathoners and knocking the ones not doing anything and pushed to exercise beyond doctor approval only to land in hospital for 5 days.

My doctor prescribes exercise level, too, and probably on the low end because she knows I will push some past it. I am currently at 15 minutes, unless I have swallowing or respiratory symptoms at which point, I have to go back to chair exercise and rest.

Diet is something worth exploring with your G.P. or endocrinonlogist. When you have an active disease or comorbidities, you really need to treat all food like a medicine, too. Do not go by recommendations of friends, family, or members here unless you run it by your trusted health care team. I gain weight if I go above 1200 calories and even less when I am on prednisone, so must be very careful.

Well, I'm gone a few days and everyone has posted. Fantastic.

Joe stated, "I would ask you to pause and think about the cause of MG, its relationship to inflammation and response to prednisone. In reality inflammation is a result of the attack by the immune system on our muscle receptors. Inflammation is not the cause of MG. In any autoimmune disease or simple injury, the body has been injured and the bodies natural response to protect itself is inflammation.

When we take prednisone this does help reduce the inflammation, but that is not the mechanism that helps treat MG. The main causitive result of prednisone after it is taken for a while is the suppression of the immune system, which in a autoimmune disease is exactly what you need. Again inflammation is the result of the disease not the cause."

There appears to be two parts of inflammation and the most common as you point out if post-MG that is being treated as we typically see.

However, with MG and other autoimmune diseases some have found rapid remission using an autoimmune diet and other supplementation. And the indication is that MG and other AI diseases could be cause by inflammatory conditions.

Just by testing your own body's system to a rigid diet protocol - you may be surprised at the results. I've found that some that are truly dedicated to an autoimmune diet like the Paleo AI Diet that have been in full remission since implementation. Some have went from Generalized MG to running ultra-marathons. While it may be hard to conceive for some, it's not impossible.

The constraint is too many of us do not fully buy and follow the protocol verbatim.

Ann is testing the inflammation response by not eating sugar and her body responds very well. That is not uncommon to see RA subside on an anti-inflammatory diet or abstaining from all forms of sugar, corn, etc.

The challenge is your muscle weaken with non-use and when we do have use, we should exercise them fully to avoid the slippery slope.

DM

DM I am ging to ask you a simple question:

Back up your statement regarding managing MG my managing inflammation. I would like to see a scientific study showing these results. Not an article written by some doctor pondering a theory or selling somehting. I would like to see a study that supports what you say.

I dont mean to come across harshly, but I am scientist and a sick one at that. like many here I was a little offended that you recommended that the folks here can do away with the pharmaceuticals that have been prescribed by trained physicians who know how to manage these types of conditions.

Just as a little reminder MG if not managed correctly can and does take lives. We have said goodbye to too many of our friends here and just barely a year ago I was almost in that group, so yes I take your claims seriously and frankly am a bit dubious.

I am a physicist at M.I.T. and as you might imagine am a consummate researcher and well published in my field, so I understand that befoe a calim like that can be made, there had better be some real science and facts behind it, because lives are on the line.

How would you feel if we learn tomorrow that a member here died afer following your advice. Think about that Dealmaker, for those are the real and true stakes in this game you are playing with, they are real and they are deadly serious. If you are willing to take that risk with others lives please continue.

I simply ask you as you are asking others here to take medical risks to support what you say about MG scientifically.

Thank you

Joe

DM I am going to go a bit further in a response to you. I have just taken a thorough look at your references that you listed in your first post and within the series of references, there is only one of any consideration and that is your PubMed listing:

PMID: 19149749

First off all this is a research general summary by 3 Iranians who at the Tehran university were attempting to work on a allergy drug discovery that helped with the cytokine release (allergic response) as tested in mice. The abstract is nothing more than a general statement that inflammation is found to be a common element in several ailments such as heart disease and cancer.

Next look up the reserchers : Khansari N, Shakiba Y, Mahmoudi M.

These are 2 undergrads and one assistant professor in biology in Tehran basically looking at a third tier antihistamine much like what we know as Zyrtec. Nothing earth-shattering here, certainly nothing to do with MG.

Finally take a look at the top of the page of the link you posted:

http://www.ncbi.nlm.nih.gov/pubmed/19149749

At the top you will see the text:

Recent Pat Inflamm Allergy Drug Discov.

Which stands for "Recent Patent Inflammation Drug Discovery"

Now for the fun part, Mr. N. Kahnsari is listed as a researcher for a company in Tehran called Cobel Darou

http://en.m.wikipedia.org/wiki/Cobel_Darou

Bottom line is the company hires a local university employee to "write" a research paper (think sales here) to support the recent patent application that this company just filed for a new allergy medicine.

DM I am afraid that you are falling for an old trap, perform a lot of Google searches for some keywords, look briefly at the abstract without actually reading the whole paper or just not noticing the obvious, its a paper regarding a patent application and has nothing to do with MG and everything to do with hay-fever.

Please DM if you are going to come across as medically knowledgeable, then by all means please show some respect here, this is a support group not a place for a know it all who just has an idea or an agenda to pander to the group.

As for your other links, they are a bunch of snake oil salesmen, I felt I had to hide my credit cards when reading those 'articles'. Most of them are looking at selling the public the latest miracle cure, again with no scientific background or valid research.

In the future I will be watching your post for validity, the members here like me are looking to do better and yes we are adults and can watch our diets. We are all grown up now.

If you have a valid point that is based in science and is medically sound or if you just want to contribute to the support of others please do so, but please dont "Google bomb" us again with lots of quickly found search links that make you look like your are professionally knowledgeable within an area of medicine that you are not. If you do I will be reviewing and if needed challenging your premises each and every time.

Joe

Joe,

As the antithesis, you cannot prove what triggers autoimmune disease (MG) backed by scientific research. Autoimmune diseases arise from an abnormal immune response of the body against normal substances & tissues...The trigger cannot be fully explained by medical research yet those willing to read from research biochemist like Robb Wolf and others on anti-inflammatory diet and try them, have seen tremendous improvement.

Joe,

Your scare tactics that someone is going to DIE following my advice.
What advice?

Eat better.
Exercise.
Supplementation... watch out for that those Ginger & Tumeric capsules, seriously?

Wow, if you feel the need to police nutrition, exercise and supplementation... go for it. Inflammation is chronic disease for most of ppl in the U.S. even pre-autoimmune disease. Actual stories by those with MG, Crohns, etc.. have been the most impressive that I have saved and archived. None of them sell anything and most interesting, is there is a common thread about their diet and lifestyle changes.

Others can simply try it for themselves and read on their own what their diet, obesity, and lack of exercise is doing to them.

Let me know when you can find a research study disproving MG and any other AI Disease is caused by inflammation or what triggers MG.

DM

DM nice try at a redirect, but you still have not rresponded to the basic question which is:

"Back up your statement regarding managing MG by managing inflammation. I would like to see a scientific study showing these results. Not an article written by some doctor pondering a theory or selling somehting. I would like to see a study that supports what you say"

Lets address this question first before paying any attention to the sand you just threw into the air to distract the group from my very basic question.

One thing at a time.....remember science is a process, not just a bunch of quotes and bluster.

Joe