[Unsure81]

Firstly I want to say a BIG thank you to everyone who replied to my last post - Fortunatos, Cait24 (Thank you for taking the time to give me your advice) Uncledave (I asked for medication but he said no) Slashman48 (Thank you - I hope you get answers soon too!) 4-eyes (I am thinking you might be right!) Pingpongman (thank you for your advice, it's good to know there are times when the most respected Dr is wrong!) Heat Intolerant (YOur post certainly cheered me up thank you!) Sandy56 (You have had quite a time of it! I hope things are picking up for you now)- you are all such a huge comfort and a fountain of knowledge not just on my posts but many others I read - so thank you all for your help and advice.

I returned to my neuro yesterday after trying to remain as active as possible all day, I wasn't quite as bad as I would have liked to have been but bad enough that my legs literally shook whenever I tried to lift them. After another examination - he asked me to walk and then did a resistance test once on each limb, no repetition - he said I have a "Functional problem between the nerves and the muscles where they are not working properly" He said my muscles were strong despite my legs shaking as I lifted them from the bed just once. He said that I cannot have Myasthenia because "You don't walk like one"???I admit my walk is weird right now - I tend to swing my hips and feel more comfortable with my bottom out and legs straight with a bit of a limp going on!! But when I try to walk normally my legs feel like they are going to give way and as soon as I stop concentrating on walking normally my body reverts to this strange walk when my legs start to tire - morning walking is definitely better than later in the day!!

Another point is that he also said my face is pulling not drooping which to a degree I do agree with - in the morning it is a drop on my top lip which doesn't move when I talk as it should and as I continue to go about my day talking, eating etc the muscles of my chin intermittently go into this spasm and pull - has anyone come across this at all??

He has completely refused to do any more testing saying he hopes a virus set it off and it will go away on its own? He hasn't addressed my shaking leg muscles, eye drop, the dramatic improvement on the photos I sent of the ice pack test, my chest pressure/breathing problems or my weaker neck and arms - I think he had just made his mind up.

On the plus side - it is a completely different diagnosis than the one he gave me 9 years ago for the same problem! Chronic Fatigue with Psychological Problems was not mentioned and he said he didn't feel this was stress related more likely a virus??

So.....I am at the point where I contemplate my next move - do I pursue this area or accept his diagnosis (Whatever it means!) The one side of me thinks he is respected and knows his job and has no doubt discounted is for valid reasons but on the other he has given me no answers, he admits that an AChR test is not conclusive and I know Myasthenia has not been ruled out here. I know how I feel and everything I have read about what I experience points me here although I accept if it is the answer it is maybe a milder form of Myasthenia?

Thanks again to you all - I would be so grateful for any advice.....again! x

[4-eyes]

Time to move along. It took me 3 neuros to find the right fit. The first one was convinced I had migraine without headache!!! Yes, a neurologist! She gave me a script for beta blockers...and I knew it was time to move along to the next.

The next one did lab test after lab test after lab test, and was OK, but he ended up losing my precious MRI and then accused me of taking it so....moved along again (as the relationship was blighted at that point), but only after a period of some months of being stubborn and doing nothing.

I don't recommend that plan!

Finally I got in with the place I still go (and it's been 13 years). Within 3 minutes of just talking with me, he stated, "I concur with your diagnosis of MG." He then did a few little tests for formality's sake and said they were suggestive for MG and that was all he needed.

You'd like to think you can trust what your neuros say all of the time, but they are people and have different ways of looking at problems. If it doesn't jive with what you are experiencing, it's much easier to find someone new than try and make the current one change his/her mind.

You do sound rather MGish to me, FWIW. Even if it's not MG, your symptoms warrant further exploration, and I don't think you're going to get that from your present neuro.

Good luck and keep us posted!

[schavarria]

Looking at me, you can't tell I have MG. I don't have ptosis, I walk normally, all my blood tests are normal, and I pass those stupid reflex and strength tests every time I see my neuro. But MG kicks my ***** to the sofa if I overdo it, which none of my doctors have seen in the 4 years since symptoms started and the 2 since my diagnosis. I started with generalized and only in the last year have bulbar and ocular symptoms started.

On my 3rd neuro (the first two dismissed me for psycho or CFS), my first EMG was fine, but in the middle of it I realized that it is with repetitiveness that my weakness comes on. So my neuro did a repetitive stimulation test right then which was abnormal. Which got me a referral to a MG neuro for a SFEMG, which was abnormal.

I'd start looking for someone new if I were you. Someone needs some schooling.

[uncledave]

Originally Posted by Unsure81

Firstly I want to say a BIG thank you to everyone who replied to my last post - Fortunatos, Cait24 (Thank you for taking the time to give me your advice) Uncledave (I asked for medication but he said no) Slashman48 (Thank you - I hope you get answers soon too!) 4-eyes (I am thinking you might be right!) Pingpongman (thank you for your advice, it's good to know there are times when the most respected Dr is wrong!) Heat Intolerant (YOur post certainly cheered me up thank you!) Sandy56 (You have had quite a time of it! I hope things are picking up for you now)- you are all such a huge comfort and a fountain of knowledge not just on my posts but many others I read - so thank you all for your help and advice.

I returned to my neuro yesterday after trying to remain as active as possible all day, I wasn't quite as bad as I would have liked to have been but bad enough that my legs literally shook whenever I tried to lift them. After another examination - he asked me to walk and then did a resistance test once on each limb, no repetition - he said I have a "Functional problem between the nerves and the muscles where they are not working properly" He said my muscles were strong despite my legs shaking as I lifted them from the bed just once. He said that I cannot have Myasthenia because "You don't walk like one"???I admit my walk is weird right now - I tend to swing my hips and feel more comfortable with my bottom out and legs straight with a bit of a limp going on!! But when I try to walk normally my legs feel like they are going to give way and as soon as I stop concentrating on walking normally my body reverts to this strange walk when my legs start to tire - morning walking is definitely better than later in the day!!

Another point is that he also said my face is pulling not drooping which to a degree I do agree with - in the morning it is a drop on my top lip which doesn't move when I talk as it should and as I continue to go about my day talking, eating etc the muscles of my chin intermittently go into this spasm and pull - has anyone come across this at all??

He has completely refused to do any more testing saying he hopes a virus set it off and it will go away on its own? He hasn't addressed my shaking leg muscles, eye drop, the dramatic improvement on the photos I sent of the ice pack test, my chest pressure/breathing problems or my weaker neck and arms - I think he had just made his mind up.

On the plus side - it is a completely different diagnosis than the one he gave me 9 years ago for the same problem! Chronic Fatigue with Psychological Problems was not mentioned and he said he didn't feel this was stress related more likely a virus??

So.....I am at the point where I contemplate my next move - do I pursue this area or accept his diagnosis (Whatever it means!) The one side of me thinks he is respected and knows his job and has no doubt discounted is for valid reasons but on the other he has given me no answers, he admits that an AChR test is not conclusive and I know Myasthenia has not been ruled out here. I know how I feel and everything I have read about what I experience points me here although I accept if it is the answer it is maybe a milder form of Myasthenia?

Thanks again to you all - I would be so grateful for any advice.....again! x

Absolutely it's time to find another neuro. No doubt about it.

[cait24]

I absolutely agree, it is time to find a new neuro. I would definitely recommend a neuromuscular specialist at a large teaching hospital or going to an MDA clinic. Insist on both ACHR and MUsk antibody testing and if they are negative ask for a single fiber eMG. If you are having a lot of eye symptoms, it may be quicker to have a neuro-optomologist diagnosis you. I went that route, and got on mestinon and received a fast track referral to a neuromuscular specialist knowledgeable in MG.

I am so sorry you are having such a bad experience.
kathie

[Stellatum]

I hope you can find a new neuro. When I first got MG, my most prevalent symptom was a really weird walk. That symptom's been gone for two years now, by the way. But the weird walk really threw off the neurologists. I was swaying wildly from side to side from the waist up.

The fourth neurologist I saw diagnosed me. I was referred to him by the third neurologist (to whom I was referred by the second!). The one who diagnosed me said, "I've see about 300 people with MG in my practice, and not one of them walks like you."

Many of the people here who had trouble getting a diagnosis finally got one from a neuro-ophthalmologist.

Abby