[Nanc]

I know this subject has been posted about before, so I apologize for the repeat.

Many of you know that my RSD started in the right side of my face just over 23 years ago (and has spread a lot in the past 7 years). The past year or two I have been having issues with my right eye and it has gotten a lot worse lately. When I wake up in the morning it is hard to open it, actually it will not open until I am awake for a while. Some days is just droops and is goopy during the day. My vision is blurry and sometimes dubbled, but only in the right eye. Many times at the end of the day it is starting to droop. I put drops in and that does nothing for me.

I saw an ophthalmologist and he wants me to see a neruo ophthalmologist because he is not familiar with RSD, although, he suspects it is RSD. I tested negative on the blood test for myasthenia gravis antibodies.

I am also having some issues with swallowing and choking. Not all the time, but it is happening more frequently.

So, anybody have any ideas or suggestions about this??

Thanks!!
Nanc

[Vrae]

Oh Gosh Nanc, I have no idea and I am so sorry!! I do have issue from time to time with swallowing especially things like soup where it is a repetitive swallowing action. choking too (freaks me out when this happens). My speech gets involved sometimes (slurring- sometimes meds, sometimes CRPS). Seems more apparent the more tired I am or the more flaring I am. My eyes get blurry but nothing like what you have described. I wish I knew more. I get it in my tong often and kind of bad, lips, skin on my face, scalp, eye brows… seriously… everywhere. It’s just worse in certain places is all. I sure hope they are able to help you Nanc!

[zookester]

Oh Nanc,

I'm sorry this is happening to you. I really hope it is a transient symptom with your eyes, that sounds scary and awful!! So sorry.

Just blurry vision here and light sensitivity. Do you have any problems with your cervical spine that could be contributing to any of those symptoms? What about getting an MRI or head CT just to be sure this isn't stemming from there?

Did you ever find a new PM?

Take care and I do hope by now you and your husband are fully recovered from your colds.

Hoping the answers come quickly.

[Nanc]

Thanks Vrae and Tessa!

My husband pointed out that I also cough a lot when I am talking quite a bit, like on the phone or in a heavy conversation. This is all so frustrating...and scary! So I was given two name of drs to see for this. One of them is in the university hospital system here, so I found his email address and emailed him He said that he is no expert in RSD, but probably knows a bit more than a general ophthamologist. He does not usually treat pain syndromes and doesn't recall RSD causing double vision or drooopy eye, but if it effects the face "I suppose that's possible". Also said that he imagines the dr I saw wants him to rule out any other potential causes. The other dr is in a neurological practice that I went to before and left because the NP I was seeing turned into a real jerk.

Tessa - I have an appointment with a dr on May 2. I saw him 1-2 years ago for my right shoulder. I wanted to try someone in that practice that would focus more on PM, but since I saw him before I have to see him first. If he can't help me, he has to "release" me and refer me to one of his partners. Such a pain (pardon the pun)!! I was able to get in with the NP earlier, but that was a waste of time. She didn't know what to do with me because of all my allergies. The only suggestion she had was warm water pool therapy. But there is the transportation issue again. Hubby is off every other Friday so I try to schedule appts then. Pool therapy does not have Friday appts at all and the latest appt the other days is 3:00. He works an hour from home - leaves at 6:00 am, returns at 5:30 pm.

As far as my cervical spine goes, I found a report in my neuro records from Jan 2012, it has to be from a CT since I had the SCS's then. The impression states: "Multilevel degenerative disc disease with mild canal stenosis and mild to moderate left neuroforaminal narrowing from C3-C7." My facial issues are on the right side.

And thanks, we are pretty much over our colds. Just lingering, irritating mess that usually hangs on.

Thanks again both of you for responding...having a bit of a rough day today!
Nanc

[Russell]

Hey Nanc,
I'm sorry for your problems with this monster that we're all stuck with.
OMG it sounds like you're discribing me!
I go through the same crap but it's my left side that is affected.
My CRPS started in my left arm and hand then progressed rapidly to my entire left side and now full body. The only parts of me not bad is the right side of my face.
My central nervous system is really shot between CRPS and cerebral atrophy which I also have.
Symptoms very with folks but some of us also deal with the same stuff. At least I'm not alone in this struggle. Now I got this loud ringing going on!
I hope you find releif...

[Nanc]

Originally Posted by Russell

Hey Nanc,
I'm sorry for your problems with this monster that we're all stuck with.
OMG it sounds like you're discribing me!
I go through the same crap but it's my left side that is affected.
My CRPS started in my left arm and hand then progressed rapidly to my entire left side and now full body. The only parts of me not bad is the right side of my face.
My central nervous system is really shot between CRPS and cerebral atrophy which I also have.
Symptoms very with folks but some of us also deal with the same stuff. At least I'm not alone in this struggle. Now I got this loud ringing going on!
I hope you find releif...

Hey Russell! It is nice that others can relate, but that also sucks that so many are suffering like this! I mainly want to see if others have similar issues for when I see the new neuro ophthalmologist since they do not seem to realize what RSD/CRPS can really do!! So thanks for your reply

I too have that annoyingly loud ringing in my ears. That has been going on for a long time and drives me CRAZY!!!

[Steelworker]

http://www.myasthenia.org/LinkClick....uT52jMdiL6I%3D

http://en.wikipedia.org/wiki/Ocular_myasthenia

http://www.myasthenia.org/LinkClick....uT52jMdiL6I%3D

Many test negative on the blood test yet have myasthenia gravis. You might ask your doc if you could try Pyridostigmine Br (generic for Mestinon) at 60 mg, 2 tablets 4 times a day. If the first 2 tablets work, then you are on the right track (and can avoid the ocular nerve conduction test which is painful and might trigger an RSD spread) and you should also experience improvement with the swallowing/choking difficulties. Good luck.

[Nanc]

Originally Posted by Steelworker

http://www.myasthenia.org/LinkClick....uT52jMdiL6I%3D

http://en.wikipedia.org/wiki/Ocular_myasthenia

http://www.myasthenia.org/LinkClick....uT52jMdiL6I%3D

Many test negative on the blood test yet have myasthenia gravis. You might ask your doc if you could try Pyridostigmine Br (generic for Mestinon) at 60 mg, 2 tablets 4 times a day. If the first 2 tablets work, then you are on the right track (and can avoid the ocular nerve conduction test which is painful and might trigger an RSD spread) and you should also experience improvement with the swallowing/choking difficulties. Good luck.

Thank you so much for this information. This is some great info that I will take to the dr with me!!

[Steelworker]

Sorry. Gave duplicate link.

http://www.brighamandwomens.org/Depa...yasthenia.aspx

[Nanc]

Originally Posted by Steelworker

Sorry. Gave duplicate link.

http://www.brighamandwomens.org/Depa...yasthenia.aspx

I did notice that Thanks again for the great info!!