New member
 

Hi. My name is Pam. I was diagnosed with ocular MG 5 years ago. It progressed into the rest of my body. Had my thymus gland removed Aug 2013. Had a bad crisis Nov 2013 which resulted in respitory arrest followed by 48 hours on a ventilator. Since then I have been diagnosed with diabetes and thyroid issues. 1 year ago I was removed from my management position because of my health. I am presently taking 1250 mg cellcept twice a day, 180 mg mestanon SR bedtime, 60 mg twice a day, 20 mg prednisone. Still having eye droop and breathing problems. My neurologist is talking about IVIg. Can anyone tell me about their experience with it?

Hi Pam,

Welcome to the NeuroTalk Support Groups. :)

Your post may get lost here so just wanted to suggest that you should check out the Myasthenia Gravis Forum

There's also a separate Diabetes / Insulin Resistance / Metabolic Syndrome Forum

For Hashimoto’s thyroiditis (underactive thyroid) and Graves’ disease (overactive thyroid)
there is the Autoimmune Diseases Forum although you can find a lot of posts throughout many different forums regarding thyroid.

You can find older posts/threads by using the Forum Search Feature

Nice to meet you!!
 

:Wave-Hello: Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

Hi Fox & Welcome to the Forum,

I am sorry about your health problems. I am so very happy and proud of you for your decision and recent success to quit smoking. Keep it up! You can do it! Cheers! I am very fortunate that I have never been addicted to anything. Especially since due to my migraines and neck problems I have been on lots of miscellaneous medications throughout my lifetime.

I am also new here. I have had major migraines and neck pain since I was 10 years old. I am now 53 so for 43 years... can't believe I have dealt with the intnese pain, nausea, loss of family and work time, etc, for pretty much a lifetime. After MANY Doctors and specialists they all came to the same conclusion, it's genetic. The aura that I experience, I can only explain as horizontal blinds flickering in the sunlight and a breeze. When my migraines are bad enough I suffer major memory loss. I also experience numbness on the left side of my face and jawline.

I hope to at least be able to share our experiences and be a good listener. Comparing notes of migraine symptoms is very interesting to me.

I came to this site due to another issue that is new my c4 c5 c6 fusion on June 2, 2015 left me with c5 palsy. I cannot use my left arm, but can use my left hand. My right arm and hand have some dexterity and coordination issues. Major nerve pain in my neck, shoulders and upper arms. I am currently in physical and occupational therapy.

There are many intelligent, helpful and caring folks on this site. Everyone is genuine, that is so refreshing these days :) I am thankful to my Neurosurgeon for referring me here.

Keep up the good fight!

Hi Pam! Im sorry your question got lost in the comments on my introduction post. I think someone may have suggested that my new double vision problem might be a result of the onset of Ocular MG, but I don't believe that to be the case. The search engine probably directed you here because of a reply. I hope you found someone with some experience. I am still trying to figure out how to navigate the whole Post/Reply/Quick Reply/Thanks/Thread thing.
Good Health to you
Fox

Still Going Strong!
 

Tomorrow is my 2 Month anniversary of being smoke free and no looking back. It's Actually quite easy now. I can't believe I didn't do it sooner. If anyone is trying and having trouble and needs an ear, I think I am strong enough now. I'm going in for my follow up chest CT next week. They found a spot a year ago. On my 2nd scan 3 months later there was no growth. Now we're gonna have another look. Wish Me luck!
Fox :winner_first_h4h:

Well I can't get away with the wait and see...My PCP didn't want to re-up my Depakote until I see a nuero again. He most likely will want to do another MRI. Its been like 5 years so I guess it's a good Idea.

I hope pam836 sees your Love Bears, Darlene!

Hi Fox. :)

Not sure if you've seen it yet or not but there is a FAQ - Frequently Asked Questions
that may be of help to you navigating the site and posting etc..

It contains sections for -

• General Forum Usage
• User Profile Features
• Reading and Posting Messages

Hope that helps. :)

Yes Lara Thanks for this!
The number one recommendation I would make for the OCD minded like myself Is that they switch the display mode from linear to thread (or hybrid) mode. Once I saw the "tree" it all made sense. I also see that there are others that aren't sure where to post their comments or replies on just this one post, so I can imagine the chaos my poor mind will endure as I explore the forums. Just kidding. I almost missed OutlawzLikeUs' warm welcome to me because it was attached to Darlene's joining you in welcoming Pam Who had started a whole new branch. It all gets very messy but I'm sure I'll get used to it. It's the Kindness, thoughts, sharing, info, helping and respect that it's all about. I just don't want to miss any of it.