If you had a video of when you are having problems that might help. other than that all IO have to offer is my support and say good luck.My neuro saw me the risrt time when I was in a crisses so he had no doubt that I had MG.
Chuck

If your neuro specializes in MG, he'll/she'll know. It's important to find one who does. I keep a log of my son's symptoms and medications. It paints a good picture. Good luck.

I write a brief one page (never more) summary which describes how I feel, mostly in bullet points so it's easy for them to read fast. Same with questions. I always end with a thank you.
Wellness to you,and good luck with your appointment.change is hard, but if this disease shows anything, we have to take charge. I'm on neuro #4.

I do believe how we present ourselves ha a lot to do with how our message is received.
If we are vague and hesitant and not confident they will perceive symptoms as minor.
If we state that we have muscle weakness in these parts of our bodies the docs take us seriously.
If our strength assessments are normal then we are fortunate.
I can feel tired and weak and still have appropriate strength.

Thanks for all the suggestions. I did see the neuro this morning. I think the appointment went okay. He decided I needed more blood work. He said there was some blood work that had not been ordered before that he thought I needed. He did talk some about the possibility of Myasthenia, but I also have sensory problems which he thought would be unusual for Myasthenia.

One of the blood tests is for Myasthenia. He said if it comes back okay he will order the Musk test. He is also running labs for Potein electrophoreses, sed rate, sensory motor neuropathy profile, sensory neuropathy antibody profile and Vit. B12.

He also said he thinks depending on how my blood turns out that I should have a muscle biopsy done. If he decides on that, he will be sending me out of state to have it done at Baylor.

I was so nervous about this appointment, but I am glad I saw him. Hoping he can come up with some answers for me.

I understand about your anxiety on seeing a new Doc as I went thru something similar before I was diagnosed and it's frustrating. That was back in 1999 and until this past March I had the same neuro for 15 years so there is hope as there are good ones out there we just have to be vigilant and educated.

Before my Dx I like yourself had a muscle biopsy as well at Columbia Presbyterian and it was negative. A short time later it was a spinal tap , blood teats etc until my dx of mg in 2000. I had it probably 2 years earlier like many others..frustrating without a doubt.

You can also check in with your local mgfa and get recommendations thru them.

Good luck and never give up as you will get better.

Cj

Gosh, I know it's frustrating not to have a diagnosis. I went most, if not all of my life being told that I had everything from heat stroke to lupus but none of it was correct. Even when I almost died after an allergic reaction which worsened my symptoms greatly, nobody could figure it out. So rest assured, they will get you figured out but it's gonna be a rough road to diagnosis and you might have to try many treatments before you find what's right for you. It sounds like your new doc has his head on straight too. You have to keep searching until you figure out the medical puzzle.

One thing that worked for me is the bullet point lists that BambooLily mentioned. Another really good tool is to print a picture of the human body (generic outline is okay) and highlight the areas on that form that are weak or that you experience difficulty with. It helps to put it all in context for the doctor. Seeing that makes it more of an impact than saying that "my arms and legs are weak" or "my voice has changed", etc. I don't know why it helps but when the see nearly the whole figure highlighted it really registers with them. Whatever works though. I'm glad that the new doc is investigating every possibility though. Good luck and keep us posted. HUGS!
Angie

Thanks for the support. It is reassuring to know you finally found out what was wrong.

CJ and Angie - How did the doctors finally come up with your diagnosis?

For me, it was totally "meant to be". I work with my neurologist as a Medical Assistant. I started my job in advance of him coming on board in August 2012. I have lived in Hawaii several times and moved here twice now from North Carolina (Central). My neurologist also moved to Hawaii from the same area. He had just finished a 2 yr fellowship with one of the world's leading experts in MG. Up to that point, the only time I'd heard of MG was on Days of Our Lives.

When he started seeing patients I heard him talking to a couple of patients that he suspected had MG. He was explaining about things like, staying away from specific drugs and how helpful prednisone can be, etc. I told him that I'd like to talk to him so we went into his office and talked for a bit. A few minutes later he called my supervisor and asked to examine me and get a full history of my symptoms, immediately. Within an hour I knew exactly what I had and I started Mestinon the next day which was magical for me and still is.

Basically, it was the right place and time. More importantly, the right person. It just took a very specific set of skills and information to put the whole puzzle together.

I do hope you find your answers very soon. It's a big puzzle that may require multiple doctors (specialists) to bring it all together for you. Good luck to you and please keep us posted. Hugs!!
Angie