Haha, I guess I should figure out where the signature thing is. lol. My name is Kim, and you're more than welcome to call me that, OR YaYa, whichever! lolol!!
That is just what happens. One eye get's blurry and I have to close it to see. I did what you said... or tried to rather. I couldn't do it very well. I get to a certain point and it's painful. If I try to keep going it turns into two fingers. lol. When the EMG doctor did the thing where he wanted me to look up at his finger, it was painful to hold my eyes up there. Maybe it's painful for everyone, but then my husband said my eyes, and head started, kind of jerking I guess. Not sure how to describe that.
Here's what's been done. I was at one neuro for 3 years (ish) after I went to my gp because I'd forgotten my son at school twice. It wasn't that I'd forgotten to go, it was that there wasn't any presence of that I even HAD to go. The school called and I was shocked. It scared me a lot, and the memory stuff was one of my first symptoms and the ONLY one that isn't explained by MG. So first neuro did tons of bloodwork, and I can't tell you what he did other than some of it the lab had to come to my home to get. I should probably get those records...... Anyhow, he did an EMG and a muscle biopsy. EMG showed positive somethings and that's why they did the biopsy. They were looking for Mitochondrial Myopathy at the time. Biopsy came back negative for Mito, and at that time the neuro was at a loss. It's obvious that something is wrong but he had done so many tests that he just didn't know where to go. So he sent me to UC Davis.
There the neuro ran a panel of blood, and I do believe the MG blood test was performed. I 'believe' it came back fine, but I can't remember specifically what she said. I have requested the records, and have an appt with her in a couple weeks.
She also had me go to a speech doctor for the gag reflex thing and my swallowing problems. (Which have been getting worse and worse rapidly. I now often have to catch my spit from going down the 'wrong pipe' and often have to cough to get it out.) and also had me do another emg. The emg doc is the one who said he thought I had MG and said something about decriments and wanting to do a fine needle emg (I think that's what it's called. lol)
I know they've done thyroid and b-12 at some point, but it's all such a blur now. Man I've got to find some way to keep track... only I'm not sure what I need to keep track of. lol. UGH..
I'm SO happy to have you guys. It's been a long lonely road where nobody get's it.
Quote:
Originally Posted by AnnieB3
Hi, YaYa. Do you have another name or do you want us to call you by that?
MG double vision is what is called "binocular" double vision. When you close one eye, the double vision goes away. Double vision can look like "blurry" vision. Take your pointer finger and put it about arms length out from your face. Slowly move it towards your face. "Normal" people can adjust to this change and will not see double anywhere in their vision. You may only see two fingers on the sides on some days and in front on others. It all depends upon which muscles are weak, causing your eyes to focus out of sync.
A neuro-ophthalmologist can help assess your DV and any fatigable ptosis.
A lack of gag reflex can be indicative of MG. We have 640 skeletal muscles and they can all get weak and not work as well.
You should probably ask your primary doctor, if you haven't already, to make sure you don't have any thyroid or other hormonal issues, vitamin D, vitamin B12, a metabolic panel, etc. Get your BP and a baseline ECG checked. You can go get breathing tests done by a pulmonologist to see if you have signs of chest muscle weakness (MIP and MEP are the tests that some docs don't run but need to in MG).
There are so many ways to approach figuring MG out, including photos of your face.
Crazy is a label that should be reserved for doctors too lazy to help someone who has been sick for FOUR YEARS!  You are not crazy.
Did they do both the Acetylcholine and MuSK antibody tests?
I hope you do get some answers soon. Sometimes you have to see more than one doctor in order to gather up more evidence. It's worth it. Tiring but worth it.
Annie |