Out Of The Shadows...

[Leah]

It's great to hear from you Joe and I'm glad to hear that you have gotten control of the depression. We all know what that and stress can do to our bodies. I have always been amazed by your positive attitude. I know you haven't always been that way, but you seem to always figure it out and come out the other end stronger. I so admire that in you.

Please stay in touch. I am sending good thoughts your way.
Leah

[gluten]

Hi Joe, When, I was diagnosed with a MD the doctor told me exercise, proper nutrition, supplements would not work and that I would never be able to build muscle. Before, the dx I was in the great shape after working out five days a week and playing basketball for two hours every day. I met many people with different MD's with various levels of muscle loss. The people with less muscle loss maintain proper nutrition. I found that dealing with the MC the body uses alot of energy fighting the inflammation. So, I ask the question what came first the MC or the MD. If there are any malabsorption of nutrients the body willl breakdown muscle for the energy to fight the inflammation and healing the G.I tract. The first major treatment for the type of MD that I have is being developed currently and is expected to be released before the end of the year. It is a diet based treatment which is high in antioxidants. They found the MD is correlated with oxidative stress and mitochondrial dysfunction. They recommend four supplements. The results with 54 people showed a 11% increase in muscle mass and it stopped the progression. After following the diet recommendations and taking the supplements I now ride my bike five days week for 90 minutes set at the highest resistance with no muscle recovery time. Jon

[coryhub]

Hi Joe,
I've missed you posting. I'm sorry you went through some bad reactions but glad you gave us an update. I hope you get the renewed energy in time for your daughter's wedding. I detect you are feeling hopeful about the possible surgery and I hope your doctor has concurs it to be good for you.
Best,
Cory

[nancyl]

Hello Joe and everyone,
I am happy Joe, that you are feeling somewhat better and you are getting the depression under control. I'm sure it will help with all you are dealing with. I read every post and was so moved by all the thought provoking messages. I think there was something for each one of us to take away.

I thought that Oz was going to be out of the question, for now anyway. Who knows what the future will bring. Right now all we have is today, yesterday is gone and tomorrow isn't here. They are coming out with so many new medical treatments and you are on top of everything with all that you know and the wonderful doctors that you have at your disposal.

Kari, I am going to print the Dalai Lama scrolll and tape put it on the frig. I love it!

Jean, your messages are so uplifting and really gives me something to think about.

I hope you continue to keep us posted on how you are doing. Get that camera ready for all the photos you will be taking at the wedding so you can share some with all of us. We want a picture of you dancing with your daughter.

Call when you are ready for a little excursion with us or just a delivery of cc cookies.

Nancy

[Joefnh]

Leah, Jon, Cory and Nancy....thanks for each of your wonderful notes. Jon I am working on a post I will put in this thread about MD a bit later, I'm looking at the differences between genetic MD and auto immune MD (like MG) Thanks for your inputs. I'm really looking forward to more information from you regarding the nutritional supplements your taking.

I agree Nancy, there are some wonderful points that are coming through here that we all can use. I will finally be getting my camera out for a trip to Burlington with a friend on Wednesday to go to a MDA gathering, she has a form of MG as well. Besides the gathering there will have a couple of neuromuscular specialist there to answer questions. I can't wait to go out with a friend, I can't believe how long I've been stuck in this rut

That's such a pretty drive through Vermont, I'll be sure to take some photos. I haven't had my camera out in months. I know I'm feeling better when I can't wait to go take some photos, tonight I'm cleaning my lenses and getting the batteries charged up!!! I'm looking forward to getting out, all I've done since about May is go to the doctors, hospital or work and then home. Time to change that.

Cory I am looking forward to the wedding a lot. I have only one daughter and this will be such an honor to walk her down the aisle., certainly a milestone for a father and daughter. As far as the surgery I am cautiously optimistic and am making sure I thoroughly look into it all of the issues before I commit to the procedure. I'm in no rush and plan on taking a few months before I make the final decision

Today I was able to make the appointment for consultation with a neurology group at Massachusetts General Hospital for September 26th. If I go ahead with the surgery, I would want to have it done at Mass General. They would be one of the leaders in this field and with MG being so rare, you want a surgeon that's performed the procedure a lot, that's only going to happen at the larger clinics and major hospitals.

Thanks again for all of the notes....I'm back and with any luck will take up some more posts with pictures of my adventures :-)

Take care all

[Leah]

I love Vermont. I actually lived there while I was in Culinary School ( Montpelier) and then again when I taught pastry making for a couple of years there. Burlington is beautiful. One of the chefs lived right on Lake Champlain. Enjoy your trip :)

Leah

[Gloria]

Joe - it's so good to hear from you again! I've missed seeing your posts and your beautiful pictures.

I'm so sorry you're having so many challenges and am glad to read that you've come out of the depression you've had. You're an intelligent guy and I'm confident that you'll make the right decisions regarding your treatment.


Be sure to take some pictures at Lake Champlain. DH took some when we were there last year and they are some of my favorites from that trip. I can't believe it's been almost a year since we saw you.

Congratulations on your daughter's upcoming marriage. I hope it is a lovely day for the wedding.

Gloria

[Zizzle]

Hi Joe,
Thanks for checking in with us again. I'm so sorry to hear about where your autoimmunity has progressed. I suspect MG is a close cousin to dermatomyositis and polymyositis. Have they ruled those out? How do they monitor your muscle involvement? Do they check CK and adolase levels? Did you have an EMG and or muscle biopsy? (Sorry if I missed that part of your explanation).

Most people with serious muscle involvement in DM take weekly methotrexate injections and most also take Cellcept, Imuran, Plaquenil, And/or prednisone. Many do IVIG infusions too, some monthly. The cost of IVIG is staggering but I hear it does wonders, albeit temporarily.

I do sometimes see reports of miraculous recoveries from these diseases, some with diet and exercise, some with antibiotic protocols, some with spontaneous remission. I hope one of those is in the cards for you.

Here's one example I came across recently. http://rheumatic.org/karen.htm

[MaggieRedwings]

HI Joe - Welcome Home!

So very sorry to hear what you are going through but thankful that you got the depression under control. Really, who would not be depressed with having the mounting health issues you are dealt. You are in my heart and prayers everyday and glad to see you back. Enjoy every minute of the wedding!

Love, Maggie

[kitty16]

Dear Joe,


Thank you for posting a reply to my current flare questions. If there is one good thing about this disease its led me here where I have met so many new friends.

Love your attitude. That will do more for your than any doctor. Stay strong my friend

Hugs,
Kk

[ldubois7]

Joe,

It is inspiring that you are moving forward and making decisions for your health.

None of us know what lies ahead, but I know I feel better when seeking knowledge, and knowing others care, so I have someone to talk to about what's happening to me.

You have a great support system here...don't forget that...and take it a day at a time.

My thoughts and prayers are with you.

[Joefnh]

I will have to admit how humbled I feel with all of your best wishes, prayers and words of encouragement. Certainly this is the truest sense of support and friendship one can experience....I am humbled and sincerely thankful for each and everyone of your notes....thank you

Overall I feel I am passed the stage of feeling sorry for myself and am now able to not only accept what MG will mean to me day to day, but also now be able to tackle this condition the best I can. With the Dx of MG I felt defeated, the last 4 years have brought on the diagnosis of Crohns, MC, Anklyosing spondylitis. Along with that came 2 bowl resections and fairly major jaw reconstruction surgeries....yeah the Dx of MG defeated me emotionally and depression took hold, although I feel depression had been creeping up for a while now. The decision to seek medical help and counseling to deal with the depression was among my better decisions in life. I may never be 'cured' but I have the attitude and strength now to manage this and make the decisions I need to get the most out of life that I can and certainly have some great friends here and on my 'snowflake, site (MG support group....snowflakes are each unique)

Zizzle and Jon thanks for your notes on MD and Zizzle that's an amazing story regarding triggers and how they can trigger severe autoimmune conditions in otherwise healthy people. I will be looking more into the antibiotic link that is discussed in that article. I did recently read another study that showed how lower back pain can often be treated by antibiotics...very interesting

Jon I mentioned I would write more about MG as it relates to MD or MS...

Muscular Dystrophy simply means muscles that waste away and do not work well. Most of have heard the term but I know I was not aware that there were several causes from genetics to mitochondrial conditions that result in muscle wasting and weakness.

With Myasthenia Gravis the results are the same, muscle wasting and eventually paralysis but the cause is different. For each group of muscle fibers throughout the body there is a nerve that is in charge of telling that small muscle group what to do, contract or relax. How it works is an electrical signal form the brain reaches the nerve ending which is right next to the muscle but not directly connected to it.

At the end of the nerve fiber is a small structure called a synapse attached to the axon (see diagram below) which is in charge of releasing a small fixed dose of the neuro chemical acetylcholine each time a signal is sent from the brain. The acetylcholine is released just above the muscles acetylcholine receptors, which when they sense the acetylcholine cause the muscle to react. With myasthenia gravis the immune system attacks the small amounts of myelin in the receptors causing them to not work anymore. As each acetylcholine site right below the nerve synapse has multiple receptors it takes damage to several of the receptors to start causing weakness or paralysis. Actually MG is often considered more closely related to Multiple Sclerosis than MD as in both disease the immune system attacks elements of the nervous system such a myelin.

Here is a graphic which shows the disease process more clearly than I can describe it:



Or....

Here is another way to think of it, here is a a normal muscle nerve junction



Here is a muscle nerve junction affected by MG





To provide symptomatic relief I take a medication called Mestinon which increases the amount of acetylcholine available in that junction....basically it turns up the volume so to speak so the muscles which are becoming hard of hearing can hear the signal. Actually Mestinon is the same medication they would give you if your were exposed in war to saron nerve gas...actually the symptoms of MG are the same as saron nerve gas exposure, paralysis of the muscles, including the ones used for breathing, that's how that form of nerve gas works.

To treat MG the goal is to suppress the immune system, with medications like imuran or cellcept which reduces the levels of damage which are a result of an autoimmune reaction, it does this by suppressing the overall immune system so you have to be careful not to suppress the immune system too much. In an autoimmune reaction the immune system attacks 'self' or healthy tissue not the things it should attack like viruses or bacteria.

The other treatment is IVIG which is essentially a very large dose of immunoglobulin given intravenously. This infusion floods the system with 'healthy" immune system components from over 1000 blood donors. Only the IGG IGM and small amounts of IGA are included in the infusion. The thought is that once the system is flooded with high numbers of these immune system components not only are the 'bad actors" from my immune system diluted, but also the immune system for several months 'feels' it does not need to make these components as there are plenty around. IVIG is considered a form of immune system modulation as opposed to suppression and yes the costs are high, about $80,000 per treatment. I'm lucky I have good insurance, the cost was $0.00

Currently I take Imuran and Mestinon daily and will be having IVIG treatments every 10 or so weeks.

This is a short term fix that really does help. I had my first fairly high dose series of IVIG in early June. The process is 5 days in the hospital where the infusion is given each day for about 6 hours. It takes 5 days to give the full dose. Overall it does make you quite tired, nauseous, achy and for me some hair loss. The side effects are a compared somewhat to chemotherapy, but the side effects are short lived. After that I had about 8 fairly good weeks...I actually felt human again.

I am currently scheduling another IVIG series for later in September with the goal of being strong enough to make it to my daughters wedding in Virginia on October 19th (I live in NH). I did have one reaction to the IVIG called hemolytic anemia which required blood transfusions, but it is thought that that effect is rare and very batch dependent, so we will be trying again with a different batch and brand to see how I tolerate it. If all goes well I will be scheduled for surgery to have a central line port implanted into my chest making the IVs much easier. My arms were a mess after the last series, it's pretty hard on the veins.

So overall MG is a form of muscular dystrophy but it is autoimmune in nature not genetic as other forms of MD, the good news is that gives us options to fight it.

Thanks for information Jon and Zizzle, I really appreciate it.

[Jody bee]

Hi Joe,

From a fellow New Englander, hugs and wishes for healing peace for you. Having your daughter's wedding to look forward to undoubtedly helps provide the strength you need to handle all of this right now.

Your positive outlook and ability to share is a great indicator that you will continue to find strength and hope for healing.

Thank you for sharing your story. It surely puts things in perspective and I'm so happy the depression has lifted to allow you to find some joy in life!

[DebE13]

Wow Joe, I wish the best to you. It is difficult to deal with so many health issues at the same time. It sounds like you've been through so much lately. I hope you continue to have improvements with your treatments.

Jean- I couldn't remember where I've heard that from, but it was you. I have been going down the "why me" road quite a bit lately and every time, without fail, when I think it, it is immediately followed by "why not me". It pretty much puts an end to the pity party I keep trying to throw for myself. Thank you!

[coryhub]

Hi Joe,
Thank you for the education on MD and MG. Your visuals go a long way in helping me understand neurons and receptors. I'm glad you have good insurance but also angered that all people in the USA are not covered.
I admire your spunk, and survivor mode skills.
Cory