I think there is a very short list of similar differentials. Does the new neuro lack confidence in his own powers of observation?

No elinora I think he wants to start fresh with his on ideas and I think that is good. Lately my problems have been getting worse my voice my shoulders feel heavy you know just don't feel good. He seemed very knowledgeable and really talked to me as a person.

That is good that he treated you with respect, Bear. I hope you find answers. Barbel

I hope he'll be something with a fresh eye!

Lems is very similar in presentation to MG. And the first thing they ruled out in my case was ALS. I wouldn't mind if a doctor sincerely wanted to check for himself. If I had not been retested by a new doctor, but relied on the previous doctor's opinion, I would never have been diagnosed with Lems.

Hmmm. I wonder what he is thinking other than MG? Are you AChR positive? I know you have had MG for a long time. Maybe he is thinking you have something on top of MG?

Hope this is your "wizard"

-sherry

Good luck bear , Finding answers can be so frustrating. I am suprised about the new doc not using the other docs notes but that may be the best idea. Good luck, Charlie

Personally, I think it's a very good idea. This is especially a good idea if you are getting worse and other doctors haven't found anything else. Good luck to you and please let us know about the outcome. Take care of yourself.

Hi Bear,

Rather then there being a few things that look like MG there are in fact many. Most of us here have many symptoms that fit under the general MG classification or we would not be here in the first place....but our symptoms vary over time and some that bothered us little in the beginning are of more concern now. They also can fit other syndromes. There have been a few here who have felt displaced when they found they indeed have another closely related condition and I wish they did not feel that way as we share community in common symptoms and treatments.

There are more then a few neural junction disorders and if you pick out any symptom and investigate it you will find many syndromes that are similar with small differences that only a physician studying all closely and being there to test something that manifests itself at a given time could pick up on..I think diagnoses is very complicated and not always clear cut, especially when research lags behind in many areas. Some of us have antibodies that have not been studied as yet.

I think the neurologist you talk about sounds good in concept. The proof will be in the pudding so to speak. I think his attitude is commendable. IF however you find after he is done he has little to offer in approach or support then it is time to re-evaluate.

Being a patient with a rare disorder is not an easy job but if you hang in there...evaluate each doctor after giving them time to show you what they can offer...you can build a supportive team.

I just wanted to take one aspect, difficulty swallowing, and show you how many things have to be differentiated when considering a diagnoses.

http://www.nature.com/gimo/contents/pt1/fig_tab/gimo35_T1.html

Sometimes we have to float about without a pure fine cut diagnoses acknowledging that we have something that looks like for instance neural junction disorder...and responds incredibly well to standard treatment for MG without having the tests in place that prove it rock solid to every physician.

We have to realize too we often have not just one problem but several that intertwine and confuse things. Finding the physician that can chip away at symptoms and start defining problems and finding things treatments are helpful and often time the actual diagnoses has to wait....hinted at but we all chase i like a prize.

Often the physician who is interested in your case because it is complex and interesting has the ability to persevere. Consider it a red flag when ever anyone is hesitant to treat you or runs the other way. They will be less then helpful and you need to find someone else more up to the task.

I have been having more problems with voice and swallowing of late. I need people who can analyze this and help me. When you find some one who listens and has ideas and will work with others that is golden!

I have no idea if any of this is helpful to you but I wish you success in finding those that can help you. Please let us know what happens next and feel free to message me if you have anything you want to discuss. Marie

Hang in there bear! Two years was my ride to diagnosis. Now two years of roulette with treatment. I'm glad the nuero treated you as a human and not a monkey.