New here-need answers please.
 

Hello to all. I am writing this for my dad. He has been diagnosed for a little over a year with MG, but he has had symptoms for much longer. I would like to share some of his story in hopes that someone has experienced similar things and maybe have some answers.

Last Feb. we were told that my dad has ALS. He had a speech problem for about 5 years and we went to the doctors and they werent able to find anything. Last. Feb, he got progressively weak and started choking. The neurologist in our area said he was SURE it was ALS and started prednisone but thats about all. Well about a week later, Dad had experienced a crisis- it was getting hard for him to breathe and one of his eye lids started drooping. It was then that the Dr. said it was MG. He went in the hospital for a IVIG for a week and came out on top! He felt awesome....for about 3-4 weeks. The rest of 2010 summer was followed with IVIG about every 4-5 weeks until it got to the point where he only was getting better for about a week and then not at all after the IVIG.

Our neurologist really didn't give us much hope, just to keep doing the IVIG and it wasnt working. So we searched out an MDA clinic about an hour away and started going there in Oct. of 2010. They scheduled a plasmapheresis tx for 5 days that worked good. It lasted til about Christmas and at that point he started choking, eye lid drooping and breathing difficulty. He was hospitalized on New Years Eve for pneumonia and crisis and had to be intubated for 5 days. He had 5 more days of plasmapheresis and did good. Came home and had to go back at end of Jan. for another plasmapherisis for 3 days.

He did good but started getting bad about a week ago. He is now in the hospital getting plasmapheresis. They have upped his prednisone this time and he takes mestinon and cellcept. The doctors keep saying the cell cept should start kicking in. He also had a thymectomy in June and he had an enlarged thymus but no thymoma. His symptoms usually start with the one eye lid drooping and then speech gets slurred about 2 weeks later followed by choking and difficulty breathing.

Any one have suggestions? He is 50 year old and is trying to not get depressed. He is single and I am an only child (im 23) so I'm pretty much all he has. Any comments are appreciated. Thank you!!

myasthenia requires both treatment to alter the course of the illness (which he seems to have been getting), and good supportive care.

As it seems that he mostly has swallowing and breathing difficulties. It is important to have a speech therapist who has experience with MG, who can teach him how to eat and drink in a way that will avoid aspirations and choking . It is also important to have a good pulmonologist, and possibly non-invasive respiratory support he could use at home, with the earliest signs of respiratory compromise.

You are a very kind and caring daughter. My daughters who are 40 and 33 have really struggled with my MG, health that degraded slowly at first but over past 3 years fast. My youngest still is trying to be in as much denial as possible. In her defense she as an extra child and was in the middle of her last birth and a hysterctomy when it hit 3 years ago. She also has a siezure disorder so she has to keep her stress level down. It has all been very had on our little family. I am glad you stopped her for information. I always feel better with as much information as I can get. I know too that I wish the girls just would call more often. It is lonely being homebound. I used to work for a call in crisis line. Until you really need it yourself it is hard to understand how very much just being listened to helps, even heals.

Annie59

[QUOTE=jwaters15;755961]Hello to all. I am writing this for my dad. He has been diagnosed for a little over a year with MG, but he has had symptoms for much longer. I would like to share some of his story in hopes that someone has experienced similar things and maybe have some answers.

Last Feb. we were told that my dad has ALS.

Hi, I'm new here too and like your dad suffer from MG.

What I have found with this disease is although the set of symptoms are common, the way the disease affects individuals varies from patient to patient. Unfortunately, there doesn't seem to be one "cookie cutter" treatment. The way MG patients respond to treatments also varies - sometimes dramatically.

My original neurologist had a protocol he followed which simply wasn't working for me. After switching doctors I now have a wonderful neuro who is treating me based on what I respond best to. For example, prior to starting iViG I was only using Mestanon for a time. Thing is, he cautiously played around with the dose and it turned out I needed a very high daily dose spaced at exact times. Much higher than norm but it worked well - for a while.

I'm not suggesting your dad follow suit and increase Mestanon. I do, however, suggest making sure his doctor is "pulling out all the stops" to treat him based on his individual response to treatment, and is aggressively working on finding the solution that will fit for him. Until remission, it's an ongoing process, rather than a one stop cure but again, everyone is somewhat different.

You did mention how it's difficult for him to cope with the disease mentally. I can safely say it is definitely hard for most patients on a daily basis. One of the things that makes it so hard is the fact that it's an 'invisible disease' not always obvious to others. The highs, the lows, and the constant search for relief are extraordinarily frustrating. The MDA has chapters all over and many have wonderful MG support groups if he is willing to go. I personally do not, and rely on optimism and a supportive family (which your dad has in you). I'm also considering a talk therapist to help me cope with the frustrations - not my 'style' but I know it'll help. It may for your dad too.

Finally I want to let you know thar your support and coming on here for answers is admirable. It's not easy on family members either and at your young age I have a lot of respect for you!

Hope I was able to help a little. Hang in there - sometimes thymectomys take years to show results so remission is still possible. Also thank goodness it's MG and not ALS (they are closely related and I feel I am actually lucky comparatively).

Best regards,
Emmay

One more thing I forgot to mention ... I have had very good results from taking the suppliment co-q10 in the ubiquinol form. So much so that I can feel a big drop in energy when I run out. Good quality fish oil also helps with inflammation.

I've had adverse reactions to any vitamin that enhances immune system, as well as magnesium and b-6.

As with anything you read on the internet though - CHECK WITH DOCTOR FIRST. :0)

Emmay, hello! It is interesting how we all react differently to different things. I am finding that most vitamins/foods that enhance the immune system help me. Magnesium is one vitamin I often take, although I have switched to mostly food based magnesium, and I can tell when I need it.

As for CO-Q10, I've started taking it recently, maybe for 2 or 3 months, and I can't see any improvements from it.

The fish oil is good as is vitamin E. Vitamin B12 does wonders for me.

I definitely recommend good nutrition to help with MG.

jwaters...I wish your dad the best. Rest and relaxation does wonders for MG as does having caring and helpful friends and family.

I have been searching the web for a good nutrition and what Vits. should I take to help but have failed only to find one diet that completely contridicted by cholestrol diet.
Can you help?
sunshine

There is a lot of misleading information about supplements to take for MG and also everyone is different. You can rarely go wrong with good whole foods. It seems that preservatives and other chemicals in foods can make MG symptoms worse, so it may be a good idea to avoid canned or processed foods.

Always talk to your doctor before you start experimenting with vitamins or major diet changes.

I found it helpful to keep track of everything I ate and also my symptoms. If I suspected something made me worse, I avoided that food for a while. Then I experimented by eating it again to see if it did make me worse. My list of foods to avoid or to eat a lot of has gotten long, but I started by experimenting with one thing at a time. Same with vitamins, although a little more cautiously with vitamins.

When I started taking magnesium vitamins I had some scary overdose symptoms from the Mestinon. Magnesium has a definite positive effect on my MG but it is also a vitamin you have to be cautious with. I don't take magnesium vitamins now but instead eat foods high in magnesium.

It may be helpful to visit a nutritionist or to get tested for some of these vitamins. Many people are deficient in B vitamins or vitamin D.

The things I found the most helpful are, in this order:
-vitamin B12
-vitamin E
-dark green leafy vegetables cooked or raw
-nuts/seeds of all kinds
-water
-magnesium (cautiously and not regularly)
-Omega 3
-Vitamin C (or citrus fruit)
-sunshine
-green tea

Some of the things I've learned to avoid, or minimize (these may include foods that I am allergic to, may have nothing to do with MG)
-processed foods
-chemicals such as pesticides & household cleaners
-wheat, especially refined white flour
-sugar
-stress
-chlorinated water (if I can smell/taste the chlorine I won't drink it)

I'm sure I've missed a few things. My point here is that this is personal for each of us and I don't think there is any one right diet to help with MG. I'd recommend eating good food, even organic food if you can find/afford it, buy raw fruit and vegetables rather than canned when possible. Cook your own food rather than eat prepared foods. Try to avoid junk food.

Eat what works for you.

Something I learned recently that helps, and this is going to sound silly, is bouncing. When I am really weak, I bounce up and down, bending my knees or whatever part is the least weak, sometimes I just move my arms up and down...I think it gets the lymph flowing in the body, maybe clearning out some of those antibodies (my theory, i don't know why this works). If I have energy I jump up and down...I'm thinking about getting one of those little excercise trampolines, maybe getting some kind of rail nearby to hang onto so I don't fall off... I can feel the positive effect from bouncing for a few hours. It feels wonderful. I wish I'd discovered this a while ago.

Sorry for the long entry. It was helpful for me to write all this down. I hope it helps others.

I eat cooked chard or spinache almost every day for breakfast, I am amazed with the results, gives me a boost for the day, reduces that heavy feeling in my arms and legs.

:hug: