long read
 

Hi folks. I am a father of 4 children and am 34 years old. I have some ?s for yall but feel i should update on how the road went.

2 years ago, i began have extreme fatigue and muscle spasms. Had double vision twice but always dealt with working hard to focus. My Dr. sent me to Mayo. 6 dept's and nothing. they believe i had MS but too early to tell. They had me so frustrated tossing me around and thousands in unneeded testing. I stopped seeing Dr.s for awhile due to being emotional distressed.

My Dr. kept sending me to different neuro's saying it had to be in my brain. Test after test for MS, they find a few lesions but nothing conclusive. Again put the situation aside because i could not just sit with what they said.

6 months ago, my Dr. started treating my high blood pressure. I was happy to see this and began thinking this was the issue. During that vist, he wanted me to see his neuro "that he trust the most." I was reluctant because i didnt want to re-hash the issues but went again. Got blood work and a MRI. I did not returned to his office because i have been their, done that. I know there is nothing.

Went to my Dr on Thursday and and he asked me right off the bat, "what you takeing for your MG." i had never heard of this and asked him what he was talking about. Like anyone out their, i may have screened a call or so but he said they DX me with MG. I am going to his office this week to confirm but am hoping is just a misscommunication. I was not ready to hear this info.

Anyway, I know what to ask when talking about MS because thats all anyone inculding my eye DR have said, but what are the need to knows and ?'s i should be asking bout with MG?

I thank you for your help.

I'm sorry that you are having a hard time. Most everybody on this forum had a hard time playing musical doctors before being diagnosed with MG. It is my understanding that MS is a lot harder to treat than MG, so maybe with medication you will do well. Good luck.

I'm sorry you have to deal with this, but it is very good to have a diagnosis. There are many treatments that help MG.

My first question for the doctor would be: what sort of drugs can I take?

Most people who have MG take Mestinon (pyridostigmine). It helps immediately with the symptoms.

In addition, many of us take drugs to stop our bodies from producing the antibodies that are causing the trouble. Ask about your options, how long the drugs take to work, and what side-effects you can expect.

Some people who have MG have a tumor on their thymus gland (in your chest). You should be checked for that. Even if you don't have a tumor, you should ask your doctor about having the gland removed, which often helps.

You should also ask your doctor to talk to you about what to watch out for. Sometimes people with MG get worse all of a sudden. If you are very weak, or having trouble breathing, or can't swallow, that's an emergency. At the hospital, they can give you treatments to take the antibodies out of your blood, or stop your body temporarily from producing more.

Feel free to ask questions here!

Abby

Arm yourself with info
 

It may help for you to read the "stickys" at the top of the list of threads in this forum - so that you have some background on MG before you go. If you are told that you are positive for MG, then you at least know what you're dealing with. At that point, ask around to find an MG (or neuromuscular) specialist, as the condition is rare enough that a regular neurologist may never have dealt with it. You'll generally find the MG specialists at teaching hospitals, if you're fortunate enough to live within a decent distance of a good one. Try to get copies of all bloodwork, too, as you may need to build a file for whatever specialist you turn to.

Ask lots of questions here - everyone is very willing to help you out!

I live in Phoenix where i have The Mayo(will never go their again) and barrows. My current is a ms specialty.

Thanks for the help so far.

Hi, jrswannie1. Welcome to the forum.

I think my first questions would be when was I diagnosed with MG and how (i.e., tests like antibodies)? If you had positive MG antibodies, they should have let you know that immediately. Did they do an EMG on you too?

After you know for certain that you have MG, then you can start figuring out what drugs you might take. Mestinon is a "helper" drug that helps with the symptoms but doesn't do anything to counteract the immune attack.

Prednisone is a difficult drug that comes with many potential side effects and is hard to withdraw from. It might not be the best choice for someone with high blood pressure.

Immunosuppressants suppress the immune system to reduce the antibody attack on the muscle receptors.

There's IVIG and plasmapheresis (normally used for an MG crisis but can be a regular treatment). They are more invasive, requiring IV's or ports.

I'm sure you are overwhelmed. Just take one step at a time. Make sure you have MG and then start asking a lot of questions!

Good luck with the appt. There's a lot to learn about MG, so come on back and we'll try to help you out, okay?

Annie



BTW, did they ever figure out why you have high blood pressure at such a young age?

I had an EMG along time ago(2yrs). My Dr. said they tried calling me but i probably screened it and moved on. Let me ask a crazy question, When in the heat, I can barely techs my motor skills are out the door. That a mg symptom?

My Dr. said they found it in my blood. I called them and they want to do a electric muscle test.

Just worried they could not find anything and don't want a random Dx.

MGers are greatly affected by heat. Muscles work best when they are cold. I start feeling the effects at 70 degrees. I can barely go outside if it is above 85 degrees.

some people are affected more by the heat than others.

Good luck with your treatment and don't get too stressed. There are a lot of nice people here on this forum to help you through.

I was evaluated for MS and MG. I use to pray to God, please let it be MG and not MS. I read a lot on line on MG and it appears to be more manageable and there are some treatment that can lead to remission.

I am newly diagnoses too - just 6 months. I am on Mestinon and 40 mg pregnisone. My neuro is trying to get me approved for IVIG.

Please keep us updated,
kathie

you have gotten some great advice. Yes, MG is better than MS. I also had difficulty getting diagnosed. Then, the treatment plan is TRIAL and ERROR. I started on prednisone and had awful side effects. I am currently in the process of getting off prednisone and on to Cellcept. Four more weeks and I should be totally off the steroids. I also take mestinon for symptoms and I am having my first ivig treatment this week. My first MG test was a false negative and five months later, it was positive. I had severe double vision, so they kept testing for a ton of different things. Basically, i felt MG was the best of all of the options that cause double vision. The worst part is that everyone responds differently to the meds. So, I am guessing it will take up to a year to get me regulated and know what the best treatment plan. But, my dr. assured me that I will not end up in a wheelchair for life with MG. :) Keep your spirits up and strive for finding a great dr.

I thank you all for the support. I think I have alot of great ?'s for my Dr. As we all have been told, one day at a time.