[BARBARA356]

Hi I was diagnosed with MG in 2008. My disease has progressed from eyes to all over. I can't hardly walk anymore. My feet swell up. They tell me I have tibial posterior dysfunction. But I think it is all muscle related. I am in feet braces and need a wheel chair if I go grocery shopping. The doctor has tried me on Imuran which had complications and had to be stopped. I am now on Methotrexate once weekly (3) 2.5 tabs. Prednisone 10 mg every other day and Mestinon time span. Mestinon seems to not work at all for me. I have a lot of responsibility on my shoulders. My whole family has health issues. Son has Cerebral Palsy, but can walk. Grandson has Severe Autism. Going on 11, nonverbal, and still not potty trained. And my husband has Epilepsy and is 61. My grandson just started having drop seizures 6 months ago, and seems medicine resistant. I feel like I am putting too much on my husband lately. I do not have the strength to wrestle my grandson to put on a pullup or stop him from running, or do the things I used to do. I can't even finish my dishes or clean the house anymore. The muscles are getting so weak I can't lift my arms to do the laundry, so I sit in a chair to take clothes out of the dryer. I feel so needy, and I don't want to be. I am the caretaker usually not the one being taken care of. My husband looks bewildered and scared., Frankly I am too. Today I could not talk hardly, my throat felt like it was closing up all day. This has happened before, but usually doesn't last this long. I asked my neuro about if there were any medications I haven't tried and he said he couldn't think of one right off hand. This is pretty discouraging. I don't have medical insurance and cannot afford the right treatment. I can't get the liquid gold treatment. I heard that is really expensive. Anybody got any ideas?

[Stellatum]

Barbara, first of all, you have my complete understanding and empathy. I'm the mother of seven, and I'm used to running everything and taking care of everybody. People tell me "you have to let other people help you; you have to learn to ask." And yet it seems like everyone I know has problems that are even worse than mine.

If I were in your position, I would begin by applying for social security disability. You will probably be turned down, and then you have to hire a lawyer to appeal the decision. That's how it goes. The lawyer will work for a portion of your back-payments when and if you get them. If you can get declared disabled, you will be eligible for Medicaid, which will pay all your medical bills.

Meanwhile, I know this: many hospitals will treat the uninsured for free. By the "liquid gold" treatment, I assume you mean IVIG (immunoglobulin). It sure sounds to me like you need IVIG. Ask you local hospitals if they have grants for the uninsured, and what the income limits are.

It may be that you can only receive this treatment at a hospital if it's considered an emergency. Here's something I've learned: if you have trouble swallowing--that's an emergency. Every doctor will take that symptom very seriously.

It really is an emergency. MG can tank really fast! It's unpredictable. Any time that your symptoms get suddenly worse, you're in danger.

I am so sorry for your increasing trouble.

Abby

[erinhermes]

First let me say you are an amazing woman. Second, there is nothing wrong with an amazing woman needing help from time to time.

When you are too weak to swallow - it is time to head to the ER! It also sounds like your dr. isn't taking your symptoms as seriously as he/she could. I know how you feel. I went through the same thing, until I was admitted to the ICU for 8 days with tubes everywhere.

Have you tried to get disability?

Wish I could be more help to you.......you deserve better!

In the meantime, I will say many many prayers for you!

Love,
Erin

Originally Posted by BARBARA356

Hi I was diagnosed with MG in 2008. My disease has progressed from eyes to all over. I can't hardly walk anymore. My feet swell up. They tell me I have tibial posterior dysfunction. But I think it is all muscle related. I am in feet braces and need a wheel chair if I go grocery shopping. The doctor has tried me on Imuran which had complications and had to be stopped. I am now on Methotrexate once weekly (3) 2.5 tabs. Prednisone 10 mg every other day and Mestinon time span. Mestinon seems to not work at all for me. I have a lot of responsibility on my shoulders. My whole family has health issues. Son has Cerebral Palsy, but can walk. Grandson has Severe Autism. Going on 11, nonverbal, and still not potty trained. And my husband has Epilepsy and is 61. My grandson just started having drop seizures 6 months ago, and seems medicine resistant. I feel like I am putting too much on my husband lately. I do not have the strength to wrestle my grandson to put on a pullup or stop him from running, or do the things I used to do. I can't even finish my dishes or clean the house anymore. The muscles are getting so weak I can't lift my arms to do the laundry, so I sit in a chair to take clothes out of the dryer. I feel so needy, and I don't want to be. I am the caretaker usually not the one being taken care of. My husband looks bewildered and scared., Frankly I am too. Today I could not talk hardly, my throat felt like it was closing up all day. This has happened before, but usually doesn't last this long. I asked my neuro about if there were any medications I haven't tried and he said he couldn't think of one right off hand. This is pretty discouraging. I don't have medical insurance and cannot afford the right treatment. I can't get the liquid gold treatment. I heard that is really expensive. Anybody got any ideas?

[BARBARA356]

Originally Posted by erinhermes

First let me say you are an amazing woman. Second, there is nothing wrong with an amazing woman needing help from time to time.

When you are too weak to swallow - it is time to head to the ER! It also sounds like your dr. isn't taking your symptoms as seriously as he/she could. I know how you feel. I went through the same thing, until I was admitted to the ICU for 8 days with tubes everywhere.

Have you tried to get disability?

Wish I could be more help to you.......you deserve better!

In the meantime, I will say many many prayers for you!

Love,
Erin

Wow thanks. You sure know how to make a sick person feel better. I can't get disability. I don't have enough earned credits for SSD and my husband is on disability and they say we make to much for me to get SSI. I have heard of a federal program to get insurance but it cost around 400 dollars a month. I guess I am stuck in the middle.

[erinhermes]

BARBARA - HAVE YOU THOUGHT ABOUT GOING TO A RESEACH NEURO? TYPICALLY DR'S TREAT MS WITH IVIG AND SINCE THEY ARE RESEARCH DR'S, THE AMOUNT OF IVIG IS ASTOUNDING - AS WELL AS THE PRICES......ABOUT 3/4 LESS THAN IVIG IN THE HOSPITAL....YOU MAY WANT TO ASK AROUND - IT JUST MIGHT BE WORTH IT! IT MAY SEEM LIKE A TYPO WHEN I PUT MS, BUT THERE ARE SO FEW DR'S WHO ACTUALLY DEAL WITH MG THAT MY DR IS RESEARCHING MS, NOT MG,, BUT GETS THE JOB DONE.

YOU STATED EARLIER THAT YOU HAVE AUTISM IN YOUR FAMILY? I'VE GOT 2 COUSINS THAT ARE NON FUNCTIONING AND NEED TO WEAR DIAPERS - @ 24 AND 17 - I WONDER IF THERE IS A CORRELATION?

BIG HUGS!
ERIN

[schavarria]

Barbara,

You sound like an amazing and strong woman. It also sounds like your body is asking for rest, so please take some time for yourself. I'm not a doctor, but the amount of steroids you're on seems very low. Perhaps asking your doctor about an increase might do wonders. I'm on mestinon 30 mg 3-4 times a day and 25 prednisone daily. I just reduced from 30 about 2 weeks ago and am back to feeling the weakness of pre-meds for my MG. The steroids have been amazing for my stamina and ability to do things.

Best wishes to you.

[oobadooba]

Hey Barbara, You are an amazing and brave worman. I will pray for you always. I have been diagnosed with MG in July after a series of test. It is in my eyes right now i have the droopy eyes and double vision. Is that what you had before it went into your body? When did you start feeling the weakness in your body? I am feeling shortness of breath and sometimes have a hard time swallowing. The tiredness is really bad i just don't want to do anything but sleep. I am also on an antidepressent for depression and anxiety. I take mestinon and nothing else. My neuro wants to put me on prednisone so i could feel better. I have diabetes and it is very controlled. I heard that pred and other meds make blood sugar go sky high. I work P/T 2 to 3 days @ 6 hrs and when i get home i'm pooped. I think about how long before I feel the full affect of MG. My neuro said if i go on pred that my MG can go into remmission. I just don't know what to i want to do.
I wish you all the best and hope you get the medical care you need.