Frustrated and Drs seem stumped

[dianakimlove]

Hello
I had my MRI to see if I had an acoustic neuroma and it was normal.  I've had alot of bloodwork that was also normal.  The Dr is actually stumped I think.  I still have ear fullness, hearing loss, I can still hear my eyes move, my eyelid has started to droop and feel heavy and I have what feels like a slight delay in swallowing all on the left side.
I've been recently tested for myasthenia gravis which came back normal also.
I have no idea what it could be and my Dr isn't offering any advice or more testing!  Has anyone else experienced these symptoms?  I feel like a crazy person but my symptoms are very real and at times frightening. If anyone can offer any advice I would appreciate it.  Thanks in advance! :)

[dianakimlove]

Thanks and I have brought it to the attention of my Dr. He has recently pushed an appointment with an eye surgeon as he feels hearing your eyes move is alarming along with the slightly droopy lid. After that he is going to refer me to a neurologist which will take 8-12 months to get in!! I think if things got really bad i could run to emergency and see a specialist on the spot.  
Hopefully it just resolves itself like magic :) haha

[caregiver222]

In view of your confirmation of Herpes Zoster, the chances are this infection is the cause of all your problems. I am not qualified to suggest a specific treatment protocol, however the U.S. goverment database "Pubmed" has a number of treatments and protocols you might want to bring to the attention of your physician. Do a "Google" search for the Pubmed database. Good luck.

[dianakimlove]

Thanks for your response and as a matter of fact I do have chronic shingles (herpes zoster) and asked my Dr if that would have anything to do with it.  He said that he was was wondering that but then didn't suggest the anti-viral drug.  The hearing loss/fullness/ear ache I've had for about 2 years though where as the eye symptoms occurred over the past 3 months.  I was dealing with my family Dr but I do have an ENT specialist who isn't getting back to me.  I'm in Canada and everything in our healthcare system is sloooow.  This makes it more frustrating.  I had to do a private MRI and pay for it myself or I would have had to wait 8 months.

[caregiver222]

Every one of your symptoms have one thing in common: they are related to a cranial nerve palsy. There twelve cranial nerves. Six of them are involved in swallowing and speech. Others control the eyelids, and palsy of one of the nerves can cause earache or pain. They question is what is causing the palsy? A growth is one possibility, but so is a viral infection or herpes zoster. You might ask for a second opinion on the MRI. An MRI presentation is either tiled (one image at a time) or cinematic (the physician controls the speed of the presentation with a trackball). Often the workday is overwhelming and reviewing the cine version with more judicious use of the trackball can reveal something. Consult with your neurologist as to whether they would consider a steroidal challange. That is a short period on prednisone to see if the symptoms totally disappear. This would confirm inflamation as the cause, not identifying the cause of the inflamation. You might ask if a test period on an anti-viral drug might be considered. Herpes zoster is another possibility. Keep at it an there is a good chance a doctor will figure it out.

[dianakimlove]

Thank you for your quick reply and no it doesn't seem or feel normal.
I will read about Neuroblastoma and see what I find out.  It's like I have a combination of all these different symptoms that nobody's heard of.  Especially the eye stuff. :)

[allergenic]

Okay, this is not normal. I hate to say this, but this sounds like Neuroblastoma. Although neuroblastoma is generally a childhood cancer, it is possible to occur in teens and adults. But, keep in mind, neuroblastoma isn't very common. Talk to several doctors, and they will tell you what is recommended. Also, a lump can accompany these syptoms of the chest