Sande, I'd be afraid of a spinal tap, too. I was offered one a few weeks ago when it was looking like I had herpes zoster encephalitis, but I said NO! I was already on the drug for shingles which would treat the underlying cause of the encephalitis, too, so a test would've been redundant.

Sometimes doctors suggest those tests either to scare a patient they don't think is sick or because thinking is too hard. If you don't want the test, then don't have it. There are ways of diagnosing conditions that involve the least amount of invasive tests possible. Sometimes they're necessary, but is it necessary yet?

I repeated a bit of what I put in Elle's other post, but worth repeating I think.

Have you had other tests to rule out your exhaustion? Were your antibodies positive? Do you like your neurologist?

I still don't know how they can confuse MS and MG. Really. They are two different animals. With MG, you can feel as though a muscle are is "numb" because weak muscles are on the spectrum from to okay to paralysis. No, you won't have paralysis if you have MG! I said it to make a point. And that is why when patients say a muscle feels numb that a doctor might think of MS.

How long have you had symptoms and how long have you been taking Mestinon? If your MG was bad by the time you started drugs, you may take a while to recover. Take it very easy right now, okay? Mestinon does help, but you still have to use common sense and rest to help MG be okay.

Did your doctor go over all of the treatment options?

I hope the next appt. goes well, too!

Annie

I think doctors confuse things, because they have never been in our shoes. Language is important, and too often we have to explain things in a way which fits the doctors "understanding".

In Dutch, there is no good word for ache, which is what I would have described my muscle feeling as, and it was only when I started describing it as "pijn" (pain) that they started to take notice.

And the ophthalmologist, kept referring to blurry vision, when I kept insisting that it was sharp, but double. It just didn't fit with what he had been taught.

Keep going and as Annie says use common sense and rest.

[


Thanks Annie-- I have had every test you can think of for MG and Neuropothy My life went downhill with a second cardiac ablation in 2012. At that time dr. says my throid numbers needed to be checked. Went to ENt Dr. Bottom line throid killed with radiation. Then told I had Graves. 2 years pass and bingo I can't even walk down my street much less to Barnagat Bay(1mile). Had caterac surgery, producing a stroke to optic nerve in left eye. Then the droop showed up. Went to eye neuro , she sent me to this Neuro I am with now.
She has been on target, except she has a problem deciding between MG and Neuropathy .
After a final pri cking of my legs she said Neuropathy . I know this sound strange but I now understand a lot about both. I think I have MG.
I will touch base again after my Tuesday second opinion
Thanks for sharing



=AnnieB3;1070064]Sande, I'd be afraid of a spinal tap, too. I was offered one a few weeks ago when it was looking like I had herpes zoster encephalitis, but I said NO! I was already on the drug for shingles which would treat the underlying cause of the encephalitis, too, so a test would've been redundant.

Sometimes doctors suggest those tests either to scare a patient they don't think is sick or because thinking is too hard. If you don't want the test, then don't have it. There are ways of diagnosing conditions that involve the least amount of invasive tests possible. Sometimes they're necessary, but is it necessary yet?

I repeated a bit of what I put in Elle's other post, but worth repeating I think.

Have you had other tests to rule out your exhaustion? Were your antibodies positive? Do you like your neurologist?

I still don't know how they can confuse MS and MG. Really. They are two different animals. With MG, you can feel as though a muscle are is "numb" because weak muscles are on the spectrum from to okay to paralysis. No, you won't have paralysis if you have MG! I said it to make a point. And that is why when patients say a muscle feels numb that a doctor might think of MS.

How long have you had symptoms and how long have you been taking Mestinon? If your MG was bad by the time you started drugs, you may take a while to recover. Take it very easy right now, okay? Mestinon does help, but you still have to use common sense and rest to help MG be okay.

Did your doctor go over all of the treatment options?

I hope the next appt. goes well, too!

Annie[/QUOTE]

Sande, I went to neuro-optomologist at Wills Eye hospital in Philly who recognized the MG and put me on Mestinon. His name was Dr sergott - loved him. He referred me to a neuromuscular speciallist at Jeff who diagnosed me with MG by a single fiber EMG.

I live in Newtown, PA. If you need any info on these doctors let me know. I got in fairly quickly with Dr Sergott when I told them I think I have MG. I had to wait 3 months for the neuromuscular specialist at Jeff.

good luck
kathie

Thank you all for all the help. This is all so new and scary when you hear a doctor say "believe MS is possible and would explain it all" for the first time. A few months ago I had never heard of MG. About six months ago's I went to the doctor because I was having headaches daily and migraines about once a week. I felt terrible, like I was hundred years old. My doctor first thought was thyroid. My TSH was 2.9, apparently not high enough for treatment.

Another month, another set of test....lupus, lyme disease, arthritis, ANA test....all negative. Another month, more test, and repeat. This sounds like a common process.

My dr is going to refer me to neuro now. I live in Greenville, SC. The more I read about MG, I don't know what to think. On Friday I was only sitting at my desk and my legs got weaker and weaker, making it a complete struggle to walk to my car. Yet today I walked for several hours without any struggle at all. I don't understand. Sometime it seems the less active I am the worse it gets. That doesn't seem to fit what I have read about MG. My droopy eyelid comes and goes too. Some days it seems like it is almost gone and other days is really bad.

I don't understand it and I don't care if they name it or not. I just don't want to hurt, I want to look and feel normal again. I just want my energy back and facial expressions.

I guess it's more test, but I am going to start tracking symptoms. Maybe that will help solve this. And again thank you all for replying.

The waxing and waning of symptoms is very typical of MG. Symptoms worsen with heat, stress and activity.

let us now how you make out
kathie

Thank you kathie. I just don't know what to think, so I'm trying not to think about it too much. I know the Achr blood test was negative but my droopy eye & tired jaw after chewing half a bagel this morning seem like MG.

One symptom I hadn't seen much of on here is my feet turn blue sometime with just sitting normal. They'll be cold most of the time and tingling sometimes but I have always thought I had bad circulation. If I rub them a while they'll turn normal color again. Does anyone have this problem and could it beasy MG related?

Elle, Your feet turn blue?!!!

That is most definitely not an MG issue. You need to go see your doctor, and probably a cardiologist, ASAP!

Feet turning blue usually means a lack of oxygen getting to them.

Have you mentioned that to any doctor? Hardly matters, you need to figure out what is causing it right away. I'm not saying that to scare you.

If it happens while you are sitting, I have to wonder if it's happening while you're sleeping. What do your feet look like when you first wake up? If you hypoxemia (not enough oxygen) during the day, it could be worse at night.

Take care of yourself, okay?

Annie